SPM Blog https://participatorymedicine.org/epatients Fri, 14 May 2021 19:14:02 +0000 en-US hourly 1 131087706 Health Information Technology Must Enhance Collaboration and Patient Care https://participatorymedicine.org/epatients/2021/05/health-information-technology-must-enhance-collaboration-and-patient-care.html https://participatorymedicine.org/epatients/2021/05/health-information-technology-must-enhance-collaboration-and-patient-care.html#respond Fri, 14 May 2021 10:00:48 +0000 https://participatorymedicine.org/epatients/?p=21860

The pressures of healthcare payment has forced physicians to move patients through the office as quickly as possible, and that is robbing us of high-value services that we can provide, particularly to educate and engage in shared decision making with our patients.  I explored this topic with a new friend and ally, Moyez Jiwa, a […]

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The pressures of healthcare payment has forced physicians to move patients through the office as quickly as possible, and that is robbing us of high-value services that we can provide, particularly to educate and engage in shared decision making with our patients. 

I explored this topic with a new friend and ally, Moyez Jiwa, a physician, educator and publisher based in Melbourne, Australia (which is one of my favorite cities, by the way. Moyez interviewed me on his Health Design Podcast recently, during which we talked about the rise of the electronic health record (EHR) and the barriers that EHRs can create to prevent true participatory medicine. 

Why are we using an electronic health record in the first place? First and foremost it should be to improve efficiency, safety, and quality of care that we deliver. When I helped develop an EHR at Beth Israel in Boston in the early 90s (a version of which is still in use today), these were the guiding principles. It was not created as a tool to optimize billing. Further, the EHR it should facilitate, rather than pose a barrier, to clinician-patient interaction. The sad reality is that technology is too often getting in the way and frustrating both clinicians and patients. Thoughtful interactions are giving way to hurried frenzies of mousing and clicking. And as a result, both the patient story and the physician’s thought processes are lost.

During my conversation with Moyez, I noted, “Our (medical) students should be learning one thing, which is to spend the time to get a careful history from your patients, because if you do that, they will do better. You will order fewer tests. You will refer to fewer specialists. Everything’s going to be better!” 

In our conversation I also described the origins of SPM (https://participatorymedicine.org/what-is-participatory-medicine/). We have viewed health information technology is an important enabler for participatory medicine so that patient can connect to information, their health care team, and other patients.

I asked Moyez the other day what he took away from our conversation. “It was very interesting that the design of EHRs has become so focused on billing- that has disrupted its potential as a clinical tool,” he said. “The involvement of accountants at the point of care is inappropriate.”

Moyez added, “It is also crucial when designing innovations that those leading the design include clinicians so that the tool doesn’t become a stumbling block in the consultation.”

I invite you to listen to the podcast, https://www.journalofhealthdesign.com/JHD/podcasts/view/428, and I welcome your feedback in the comments section here. 

Dr. Danny Sands is a co-founder and the chief advocacy officer of the Society for Participatory Medicine.

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Moving Forward to Make SPM Stronger https://participatorymedicine.org/epatients/2021/03/moving-forward-to-make-spm-stronger.html https://participatorymedicine.org/epatients/2021/03/moving-forward-to-make-spm-stronger.html#comments Tue, 16 Mar 2021 11:00:30 +0000 https://participatorymedicine.org/epatients/?p=21850

As you know over the past year we at SPM have been involved in rethinking our organization. How can we make it stronger? More sustainable? More impactful? And more meaningful to our members and corporate partners? As part of this we are restructuring the organization and how it works.  For example, we are hiring an […]

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As you know over the past year we at SPM have been involved in rethinking our organization. How can we make it stronger? More sustainable? More impactful? And more meaningful to our members and corporate partners? As part of this we are restructuring the organization and how it works. 

For example, we are hiring an executive director, reinvigorating our already strong marketing efforts, and transitioning roles and leadership of the board. And more changes will be coming.

As part of this we have created a new role that I am excited to assume. In my prior role as chairman (for oh so many years!) I had both operational responsibility and responsibility as an ambassador and advocate for participatory medicine and the Society. As Mary Hennings has taken the helm as interim board chair it frees me to focus on the other parts of the job, which made me think about what a “chief advocacy officer” would look like for SPM. I reflected on our needs and the roles I can play (most of which formalize my prior efforts).

First and foremost, I will continue to be involved as a board member of this great organization. That involves serving on committees, leading initiatives, and engaging in group activities of the board.

Next are my outward-facing roles. I will serve an ambassador to the Society, serving as a liaison for outside individuals, organizations, and companies, and will be a public face (not the public face) of the SPM in online and in-person forums, including conferences (when we get back to those). As an extension of this I will continue to help to lead our fundraising activities throughout the year. 

Finally I will have shared responsibility for communications, thorough working with the marketing committee and by generating thought leadership and other content that helps promote the Society and the practice of participatory medicine.

I am enthusiastic about this new role, which permits me to focus on essential activities without having to divide my attention between these and leading the board. And focus is what we need to build a better SPM.

But I can’t do any of this alone; I need your help and ideas. I look forward to hearing from you.


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Shake up the System: Sign & Share the Participatory Medicine Manifesto! https://participatorymedicine.org/epatients/2021/03/shake-up-the-system-sign-and-share-the-participatory-medicine-manifesto.html https://participatorymedicine.org/epatients/2021/03/shake-up-the-system-sign-and-share-the-participatory-medicine-manifesto.html#respond Mon, 08 Mar 2021 14:00:16 +0000 https://participatorymedicine.org/epatients/?p=21825

Time for change! The theme of our 2019 conference was #Time4Change. This post kicks off a major 2021 campaign for our Society: the Participatory Medicine Manifesto. At that event we took action: in a design-thinking exercise, attendees crowdsourced the ideas that have become this manifesto. In the 18 months since, we’ve refined the ideas, drafted […]

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Time for change!

The theme of our 2019 conference was #Time4Change. This post kicks off a major 2021 campaign for our Society: the Participatory Medicine Manifesto.

At that event we took action: in a design-thinking exercise, attendees crowdsourced the ideas that have become this manifesto. In the 18 months since, we’ve refined the ideas, drafted the text, and tested it repeatedly with numerous audiences, within our society and beyond. At last it’s finished, and has been produced as a gorgeous two-page full color PDF.

Please watch this two minute video from some of us, read about the manifesto, and sign the Pledge page:

Imagine healthcare as a true partnership

“Participatory” really does mean partnership. As this excerpt from the manifesto shows, in each of five areas, we put forth matching promises between professionals and their patients:

It’s the fulfillment of themes we’ve been writing about for more than a decade, when we echoed the NPSF’s patient compact in a post. That compact voiced the ideas in a context of paternal caring; today we say it’s #Time4Change – full partnership.

What’s next

Promulgating this is a principal campaign for SPM in 2021. We’ll be having a series of online forums about different aspects of it, culminating in an event late this year which focuses on making the manifesto’s promise a reality for individuals and organizations.

You can help: Sign on, and share with your networks. The manifesto’s page SignTheManifesto.org has everything you need: social media images, the two page PDF of the manifesto, and the heart of the matter – why we’re doing it:

There are three parts to the Manifesto.

  1. The manifesto itself, what we believe in one paragraph
  2. The highest level areas that we agree to focus on.
  3. Most importantly, are the “I Will” statements that we created based on everyone’s input. These are the key, they are what makes this more than a piece of paper. These are the things that we hope everyone agrees to take on. For example, As a Patient, I will be prepared to share my story and experiences completely, accurately, and honestly.

Take action! Time for change.

Please: the world needs healthcare to be more participatory. Read the manifesto. Think about these five exquisitely important concepts, and how they look in partnership. Sign – and share. Get your friends involved, too. That’s the only way real change ever happens: when a lot of us take action.

Thank you!



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Trust is Complicated: Person-First Safe Living in a Pandemic Part 3 https://participatorymedicine.org/epatients/2021/03/trust-is-complicated-person-first-safe-living-in-a-pandemic-part-3.html https://participatorymedicine.org/epatients/2021/03/trust-is-complicated-person-first-safe-living-in-a-pandemic-part-3.html#comments Mon, 01 Mar 2021 14:07:34 +0000 https://participatorymedicine.org/epatients/?p=21819

Trust in COVID19 times depends on context: circumstances, historical identity, tolerance for risk, comfort with uncertainty, attitude about individual rights and social responsibility, critical thinking & more. Introducing a trust label.  Podcast episode here Proem (Preface) As we spending much of our time trying to absorb and filter some of the dirty water spewing from […]

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Trust in COVID19 times depends on context: circumstances, historical identity, tolerance for risk, comfort with uncertainty, attitude about individual rights and social responsibility, critical thinking & more. Introducing a trust label.  Podcast episode here

Proem (Preface)

As we spending much of our time trying to absorb and filter some of the dirty water spewing from the cacophony of COVID-19 stuff, we keep asking, who wrote this?  Who said that? When? Is it still true?  So what? But what about xxx?  It’s exhausting. Who to trust? What to trust? After draining, maddening calls with family and friends who clearly trust something different than us, we feel the cloudy mechanisms of trust, conscious or unconscious. Some people trust Dr. Fauci, others Mr. Trump.  Some follow the CDC, others QAnon. What does trust even mean? What is trustworthiness?

In this piece, we will examine trust.  We don’t have the chutzpah, the energy, or the resources to give Seals of Approval for trust. At best we can promote a bit of self-awareness about trust. Picture a family sitting around the breakfast table with a young person waving their tablet and exclaiming, ‘look what I found about mask-wearing!’ Imagine an adult responding, ‘Who wrote that? When was it written? Who paid for it? Did it cite any references? Does it make sense to you?’ We advocate for self-awareness of our own trust faith, filters, and responses.

Our overriding lesson learned: Trust Is Complicated.


Let’s approach trust using our person-first theme -starting with regular people and meeting them where they are.  Person-first includes knowing your audience and end-users and understanding their questions, their circumstances, their preferences, and conditions. People will find information where they usually find information – talking heads, websites and searches, cronies, professionals.  They may or may not question what they read, hear, watch. Many will share what they learn and become someone with an apparent 15-minute advantage (knowing just a bit more).

The context of trust

For some trust reveals itself most when they lose it – think about losing trust in a family member, friend, politician, celebrity, or movement or when someone important to you loses trust in you – devastating, a punch in the gut. The inertia is trust until it isn’t. For others, the inertia is mistrust. Trust must be built in a headwind. Show me your trustworthiness.  So, trust ferments in a context, a relationship. Let’s try to understand the personal ingredients that flavor the creation of trust. In Covid19-world, personal trust ingredients include understanding an individual’s circumstances, experience, and historical identity, their tolerance for risk, their comfort with uncertainty, their attitude toward individual rights and social responsibilities, and their capacity and willingness to think critically. We’ll examine each ingredient next.

Circumstances, experience, historical identity

Ponder 911. Many people trust that when they call 911, someone will come quickly to help them, whatever the help they need. But if you live in a community where 911 doesn’t come or the help isn’t helpful or is downright lethal, you won’t rust 911. 911 has a long racist history. Many people raise The Tuskegee Syphilis Study as an influence on trusting the medical system. Different circumstances, different experiences, a different history. Trust is complicated.

Risk Tolerance

Here’s a Covid-19 Risk Tolerance Scale published by the APNA, the Association for Premier Nanny Agencies, ranging from Very Strict to Very Open. Some people, very strict, want to stay in their bubble with people living in the same house and avoid all outside contact.  Some, Fairly Strict, may leave home for work and socialize with a mask, physically distant. Still others, Very Open, socialize without masks or physical distance. Self-awareness of your risk tolerance helps to understand the trust of others. Understanding others’ risk tolerance helps to understand of their trust. Trust is complicated.

Comfort with uncertainty

We continue to meet our audience and end-users where they are when we understand their comfort with uncertainty. Most people (professional and non-professional) feel more comfortable with certainty than uncertainty.  Certainty is a continuum. Certain: The earth is round. I will be safer if I look both ways before I cross a busy street. A bit less certain: I will still have a job tomorrow. Ibuprofen will reduce my fever. Much less certain: I will win the Lotto. I will never contract COVID-19. In our Covid-19 world, certainty seems harder to pin down. Things appear to change every day. We’re repairing the airplane while we’re flying it. Part of comfort with uncertainty is that some people think in black and white (it’s correct or not) and some think in shades of grey (it depends). Perhaps people who think in grey are more comfortable with uncertainty?  Knowing where people live on the continuum of comfort with uncertainty helps us understand their trust context. Trust is complicated.

Individual rights and social responsibility

Another continuum relevant to profoundly understanding the context of trust can be represented by individual rights and social responsibility. Those who prize individuals’ liberties to pursue life without others’ interference have a different trust context than those that prize duties or obligations for community cooperation, respect, and participation. It’s my right not to wear a mask versus wear a mask to protect each other.  How much will the person that values individual rights over all else trust strict evidence-informed mask-wearing and physical distancing? How will a person that values cooperation and community over all else trust a voice on the other end of the continuum? Trust is complicated.

Critical thinking

Critical thinking, at its root, is curiously, persistently questioning everything. Does this make sense? So what? How does it apply to this situation?  Who benefits? Critical thinking, like music, is a skill using many muscles that need practice and exercise. As a patient-caregiver activist, I’m a person who appears to question everything. Yet I’m happy to leave most decisions about my multiple sclerosis to those I trust (my wife, my primary care doc, and neurologist).  But without trust, I question everything. My wife, on the other hand, seems to question everything. It’s less about trust and more about comfort. Here’s two models to help with critical thinking: Who, What, Where, When, How and I.N.Q.U.I.R.Y

Trust is complicated.

Trustworthy versus factual

Once we meet people where they are and understand their risk tolerance, comfort with uncertainty, attitude toward individual rights and social responsibility, and willingness and capacity to think critically, then we bump up against the dilemma of trustworthy and factual. They’re different. A simple definition of factual is verifiable – data that is verifiable – getting the same results repeatedly. Yet COVID-19 facts – really almost all facts – seldom stand alone. Interpretation and commentary are constant companions to facts. What do facts mean to me, to my community? That’s where trust comes in. Interpretation and commentary. Trust is complicated.

Trust label

Likely, you still ask, this context stuff is all well and good, makes sense, but who and what should I trust as I make decisions for safe living in a pandemic? Point me in the right direction. Remember that we started with We don’t have the chutzpah, the energy, or the resources to give Seals of Approval for trust.  Instead, we became drawn to the nutrition label model. Most people don’t use nutrition labels, but those that do use the nutrition label to make food selection decisions. Most people who use nutrition labels trust them. Why? For those people concerned about their diet, the nutrition offers some factual information about the food package contents. It makes no claim to healthiness or taste. A person needs to want to know about the contents and interpret the calories, sugar, fat, fiber for themselves. See the label here for macaroni and cheese. You can see serving size, calories, nutrients and fiber, and percent of the daily value. Perhaps, a trust label could offer some facts about answering resources that the end-user can interpret for themselves.

In this table you can see some of the questions we sought to answer with a trust label and some fields that could be easily attached to the answering resource. Perhaps you’re thinking that a trust label seems underwhelming, too simple. Well, the creation of the nutrition label was a big ask. The nutrition label history runs from a White House Conference on Food, Nutrition, and Health in 1969 to the passing of the Nutrition Labeling and Education Act in 1990, 21 years. The evolution of values and standards continued through the 1990s, 30 years. Trust is complicated.

Now what?  Next steps.

So, we have taken some baby steps: standing up a library, a repository, a website with person-facing resources containing a trust label so people can more easily seek and share answers to their questions about safe living in a pandemic. Join us. Help us enter answering resources using this Google Form. We built a website safeliving.tech to house our materials. Talk to us here info@safeliving.tech. Our next step will be summarizing our work for regular people, clinicians, and knowledge management professionals and hosting some virtual spaces to chat about this work. Trust is complicated. Safe living is complicated.

Resources about trust in safe living info

CDC initiative Adapting Clinical Guidelines for the Digital Age

EBSCO to use their Stacks Content Management System

Patient-Centered Clinical Decision Support-Learning Network.

CDS Trust framework: 9 trust attributes = trust is complicated.

Want to enroll somehow? Know of a place for us to cross-post our print, video, or audio stories? Communicate with us here info@safeliving.tech, #safelivingpandemic on Twitter, or https://www.safeliving.tech/

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We’re Looking for an Executive Director to Join the Society https://participatorymedicine.org/epatients/2021/01/were-looking-for-an-executive-director-to-join-the-society.html https://participatorymedicine.org/epatients/2021/01/were-looking-for-an-executive-director-to-join-the-society.html#respond Wed, 27 Jan 2021 00:07:25 +0000 https://participatorymedicine.org/epatients/?p=21815

Have you heard? The Society for Participatory Medicine (SPM) is hiring an Executive Director. You can read more about the position here and how to apply. Please pass the job description along to your professional network as well as anyone you may know who may be interested in helping lead the organization into our next […]

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Have you heard?

The Society for Participatory Medicine (SPM) is hiring an Executive Director. You can read more about the position here and how to apply.

Please pass the job description along to your professional network as well as anyone you may know who may be interested in helping lead the organization into our next decade of growth.

SPM is undergoing significant change, having recently refreshed our mission and vision statements. It has since developed a new strategy that has begun to be implemented. The Society is seeking an Executive Director who can refine this strategy and execute to lead our organization through the next stage of growth.

The successful candidate will be responsible for overseeing all aspects of our organization, ensuring that we are operating efficiently and effectively to meet business goals.

Read more about the position here and how to apply. Resumes should be submitted no later than February 12, 2021.




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Power of People. Pause and Trust. Lynne Becker https://participatorymedicine.org/epatients/2021/01/power-of-people-pause-and-trust-lynne-becker.html https://participatorymedicine.org/epatients/2021/01/power-of-people-pause-and-trust-lynne-becker.html#respond Tue, 12 Jan 2021 13:26:21 +0000 https://participatorymedicine.org/epatients/?p=21812

Designing clinical trials for and with people with Traumatic Brain Injury. Lynne Becker looking forward over time, not backward. Building a business. Proem You know the old story of the researcher looking for their lost keys under the streetlight when they lost them in the dark alley. ‘Why aren’t you bringing the light into the […]

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Designing clinical trials for and with people with Traumatic Brain Injury. Lynne Becker looking forward over time, not backward. Building a business.


You know the old story of the researcher looking for their lost keys under the streetlight when they lost them in the dark alley. ‘Why aren’t you bringing the light into the alley?’  ‘Because the light’s already here in the street.’ OK. Not necessarily a fair story.  The researcher might not know that they’ve lost their keys.

People with lived experience certainly know that keys are lost, and sometimes they can ask the questions to help find them. They ask questions to use the answers to make decisions with their clinician partners about their health and treatment. I often shake my head in wonder when I listen to scientists and funders who stubbornly lack awareness of the value of patient-caregiver partnership in all phases of research and clinical trials.

Introducing Lynne Becker

Health Hats: Lynne Becker, a clinical trials research expert, knows the value inside out as a research scientist and a mother of a daughter with Traumatic Brain Injury (TBI). I asked Lynne to introduce herself.

Lynne Becker: Hi, I am Lynne Becker, the CEO, and founder of Power of Patients. I come from the clinical trial world over the last 25 years as a biostatistician and epidemiologist. I managed and designed all sorts of clinical trials. I decided to launch this company specifically to help people with brain injuries and reshape the course of clinical trials in this space.

Understanding Traumatic Brain Injuries

Health Hats: OK. So, reshape because reshape implies that you were less than delighted with how it was before, and you wanted it to take a different direction?

Lynne Becker: Yes, that’s a smart way to say it. My goal is to characterize the TBI population because it is very uncharacterized, and because of that, it’s misunderstood. A simple example is that no two brain injuries mirror one another and not even in the same person. Typically, what happens in clinical trials is you first take the time to slice and dice and understand the population and what is happening to them before you start designing trials. That did not seem to be the case when I pulled all sorts of research papers in clinical trials of brain injuries. We’re creating clinical trials based upon devices coming up or repurposing drugs currently being used in one area, and thought may have some indication in the brain injury space. But it’s a very heterogenetic population. Therefore, we must start at the basics and understand the symptoms, what the makeup is, something other than your very traditional demographics of age and gender, and things like that. Then ultimately reshape from the patient’s perspective, how the clinical trials will be designed to address their symptoms and triggers, and things like that.

Health Hats: OK. To me, things that appear to be individually unique are often more the same than some people think. Or maybe it’s differently individually. What I’m trying to say is, ‘do you find that even though when you know one TBI traumatic brain injury person, you know one brain injury person? But you can categorize somehow based on function or cognition or whatever. What are those kinds of things that you have found that you can group people?

Lynne Becker: Some high-level groupings currently do exist, to what you’re saying. You have cognitive impairments; you have physical impairments; you have balance issues, sight issues, and emotional issues. So, those high-level things exist currently. Let’s talk about two specific kinds of injuries – a closed head injury versus an open head injury. Someone that doesn’t have an open gaping wound and somebody who does. You can often visually see that open gaping wound, even after their hair grows over and things like that. There are clear differences between that person’s emotional problems versus the person with a closed head injury. The closed head injury people may or may not – this is part of the problem – get better or it may worsen with certain other triggers. And these are like the hidden symptomology or the hidden triggers that suddenly, it’s like an onion, a new thing just blew up. And what was it that caused it to blow up? People with acute conditions typically have a very open head wound or even in a neck injury that’s very clear to be seen. You’re able to give them good acute care in the very beginning, but once they get past that acute stage, they seem to be mirroring what a mild case or somebody with a closed head injury is now experiencing, too. Those are some of the challenges. Even though we say, ‘OK, you have emotional issues’ or’ OK, you have cognitive issues.’ You still cannot drill down to the real essence without understanding triggers that cause them to get worse or what gets them better. That’s what we also want to know. Can’t get them better. Some people don’t know; myself included, that my daughter had a vision impairment. So, it wasn’t until I did a lot of digging and research that I could figure out that this doesn’t make sense; she should go and get this checked. At least take it off your list and make sure that you’ve addressed it. So, your brain is amazing because it’s going to figure out a way around it. If you think of a sprained ankle, you’re going to limp for a little while. If you have a brain injury, you’re going to be sleeping for maybe a long while. You just don’t know. Your brain is going to shut your body down. But with a sprained ankle, your body is going to figure out how I can walk without rehabbing it? You can use that simple analogy, even with your brain. If you don’t get the right rehab therapy, your brain will figure out a way to compensate or work around this deficit.

What change are you trying to make?

Health Hats: OK. So, what are you, what change are you trying to affect with Power of Patients?

Lynne Becker: I am trying to change how clinical trials are designed. Typically, if you have a clinical trial designed, they stay at this very high-level grouping, just like we discussed. But they don’t dig down into the true etiologies of these symptoms. And when does it flare-up in a certain person? You, if you have a TBI, you might walk outside, and if a bus goes flying by or a siren, it might send you into a panic attack. Somebody else can handle that. But we just don’t know. Or maybe they go to a mall, and they flip out like they have to go home immediately. That’s the minuscule issues that must be well understood and they’re not. Right now, research, clinical trials, and our knowledge remains at this high level instead of drilling down to the nuances amongst individuals. Suppose we’re able to find enough people in these nuanced categories. In that case, we’ll have enough people for clinical trials so that we can design them specific to the idiosyncrasies they present with.

Answers to what questions?

Health Hats: So, it sounds to me that there are two parts to this. What are the questions that research is answering? And how is the trial designed so that it can answer the questions with some specificity to that they’re useful answers?

Lynne Becker: Yeah, I think that’s a good way of looking at it, for sure. Definitely on the second half simply because what are the questions that they need to answer specific?

Health Hats: OK. I find in my experience that they are usually researchers or clinicians. It’s not often the person with whatever or the people who are part of their caring network. Those kinds of questions can sometimes be wildly disparate.

Lynne Becker: Yes. I think you just said it perfectly. What they think is happening – they being the clinicians and the researchers, and I’m speaking from experience because I come as a researcher and a clinician, what I thought was or wasn’t happening to my daughter was completely off base. She looked so normal. I could not figure out for the life of me why either behaviors were happening, or she was just not able to function. What was going on? So that’s the incorrect supposition. We think we know until you live the life of the actual person or the caregiver. That’s what you need to hear.

Health Hats: I looked at your TBI dashboard. Did you design that because even if you are asking relevant questions to patients and caregivers, the data that’s available in electronic health records and claims data, which is often the source of much information that’s being used in clinical trials, is insufficient. And that patient and caregiver recorded data may be more relevant. Tell us a little bit about your dashboard.

Electronic records, ICD codes, and Zebroids

Lynne Becker: First, your observation about the EMR, the electronic medical records system, is correct. It comes from this ‘what they think is going on’ perspective. I had to give a little backstory to your listeners. The EMR record systems are populated because of ICD codes that exist after years and years of rigorous research in a specific indication, and the codes are there one of the problems, and there are several, but one of the issues with the ICD code system to be able to identify patients for clinical trials in TBIs, is that there aren’t enough ICD codes to put them in the bucket, right? So, they end up going over into a completely different category because that’s the only category they can find to match their ailment when the real issue is TBI. So maybe you have cognitive problems, but the cognitive problem is a result of the TBI. So, ICD codes are building, but they’re not anywhere near where they should be.

We should talk about ICD codes for a minute. International Statistical Classification of Diseases and Related Health Problems (ICD), a medical classification list by the World Health Organization (WHO). It contains codes for diseases, signs and symptoms, abnormal findings, complaints, social circumstances, and external causes of injury or diseases. ICD codes are the child of billing and clinical information, sort of a zebroid. Every clinical encounter needs an ICD code – now in version 10 –to bill. As the ICD system evolved over the years, more and more codes have been added. There are over 70,000 ICD10 procedure codes and over 69,000 ICD10 diagnosis codes, compared to about 3,800 procedure codes and roughly 14,000 diagnosis codes found in the previous ICD-9. There are no ICD codes for hungry because you can’t afford food, or down and out, or just plain scared. ICD codes represent a point in time, a snapshot, not a life. Assigning codes is a billion-dollar industry. Let’s jump back in.

One of the things that also happens is you might go to your doctor every two months or every three months, right? Once a year, that is a snapshot in time, right? That is not the real-time course of events of what that person is going through. So, my dashboard tracks real-time data for the person so that they can actually see, ‘OK, I had a spike in my anxiety.’ We ask them specific questions to help them figure out what caused the spike, think of MadLibs, so they can fill it all out, and then they get this report, and they can bring the report is a timeline, a trend analysis if you will, to their doctor. So, this is what’s happening.

Birthing precision, personal care

Health Hats: Whatever chronic thing – chronic pain, multiple sclerosis, like I have, or TBI, or whatever – this journaling and finding patterns and then the N of one experimenting is such a challenge.

Lynne Becker: But it’s true personalized care. And it empowers the patient, and that’s huge is the patient no longer has recall bias. They can do this on the fly. And they can say, no, doctor, this is what happened.

Health Hats: So powerful. But the challenge is that this real-time journaling, whatever you want to call it, and having it in a searchable and manageable and analyzable – if that’s a word – form is helpful. But I find the challenge with that is that the analysis of it is also a team process. For the most part, clinicians, depending on their specialty, will see certain patterns. The caregiver may see others. Analysis requires a combination of all those perspectives. You’ve been talking about asking the important questions, designing, selecting data, redesigning research, and analysis. This must be something that I’m sure you’ve built over the years. This is not something that you birthed whole.

Lynne Becker: I worked fast.

Health Hats: I’m sure. Having your experience makes that possible. But I imagine that – correct me if I’m wrong cause I really don’t know you and I’m making all sorts of suppositions, feel free to blow up my suppositions – but that you started out because somebody or some people in your family had this challenge and you wanted things to be different. And you had the knowledge and experience and energy to move forward. But moving forward, I don’t know, but all of those things and a buck and a quarter will buy a Pepsi as far as I’m concerned. It takes coalitions and infrastructure, and there’s just a whole sort of like a business part of moving this forward. So, can you tell us a little bit about that evolution?

Murphy’s law merry-go-round

Lynne Becker: Sure, of course. Listen, if it were as easy as you just described it, goodness gracious, that would be a miracle in and of itself. It has been birthed over, let’s say, five years when my daughter was injured in 2015 with a severe traumatic brain injury. A few days after her injury – her optic nerve was torn when she got hit and things like that – Murphy’s law of everything that was going to go wrong in the healthcare environment and her school, it all went wrong. She was away at school. A few days after her injury, she stroked on top of it. What’s even more insulting is that the school and the hospital were part of the CDC Heads Up program. It gets crazier. The electronic medical record system went down. They took her to urgent care, not to the children’s hospital. It was one thing after another. So, that’s a whole other two or three podcasts. But because I believe in clinical trial research – that’s what I do- I believe in what we do, but I also believe in making sure people are treated fairly and wholly as well. We were in Charleston, South Carolina, where we used to live, and I was taking her to what I thought was the best of the best doctors that I knew down there. They all kept saying just a concussion. She just needs a rest. I would look at her eye and I would point it out to them, and I’d say, but her eye is messed up. You can just see it. It’s right there. You don’t have to do some special exam. It’s not working and just rests. We think her vision will come back. I’m like, you think so? I’m going to put a little salt on my wound here. Eleven inches of historic rainfall hit our home when she was having this very acute case happen. Then subsequently, we had three hurricanes hit our house as well. So, I’m dealing with a child who can’t be moved. She couldn’t see. She had panic attacks and never woke up. Like this child was Rip van Winkle. I kept listening to them, and I drank the Kool-Aid as I tell everybody. But it was getting frustrating because I kept hearing that same broken record. She just needs to sleep. OK, how long, it’s been two months now, and she’s passing out? She’s sitting up in bed, and she’s passing out. How do you explain that? And they’re like, she has to start exercising. So, we take her to a teeny, little exercise class, and in less than two minutes, she’s on the floor because she passed out. What the heck is going on here? So now I start asking these questions, and I start asking them vigorously. I start pulling research, and I’m finding nothing, nothing of any current relevance, maybe in the seventies. OK, maybe I’m not looking correctly. I kept saying, perhaps it’s me? Fast-forward and she’s starting to stay awake a little bit longer and things like that. But nothing from where she was. She had to be removed from school, and I homeschooled her, and I’m thinking, how do I teach somebody like this? Her academic status went from 98 percentile to 37. This is mentally challenged. How do I teach her? She couldn’t stay awake, and she would be having little panic attacks, which became really exasperated—even trying to memorize the pledge of allegiance, something simple like that, that we all know. So, then she can’t walk, and she couldn’t remember how to crawl. She couldn’t remember how to run. We are now a year and a half into it. I’m now going to another neurologist who might help me. It wasn’t until one doctor said to me, you’re just here because of the movie. Now, at this point, I’m bringing binders. The movie he’s referencing is Concussion. I said, ’I’m here because my daughter is – I don’t know what she is, and I need help.’ I couldn’t even explain it. She couldn’t explain it. He didn’t even look at her charts, and I thought, how dare you? I’m quickly losing my faith in the profession I work in.

Eureka, a light at the end of the tunnel.

So, I write a letter. I was given two names to a couple of doctors, one in New York and one in Philadelphia. And I write a letter to them because they had presented at a concussion conference. I didn’t hear back for a little while. In the meantime, I had started hiring radiologists thinking something’s missed here. What is going on? Can we maybe reread their films, and five, six radiologists is what it took. When I finally got to the sixth one, the doctor said, ‘I don’t know, who’s telling you this as normal, but your daughter has severe spots all over her brain.’ Your heart stops because the whole time you’re being told she’s fine, it’s just a concussion. Take a chill pill, mom. In your gut, there’s something wrong. And at this point, I’m carrying binders because I started tracking her so I could explain stuff. They were disinterested to be honest with you. Then the two doctors contacted me that I wrote emails to. The first in New York put it out there, just like, boom. What you’re telling me is not a concussion is a traumatic brain injury. Then oh my God, number two, what do you mean? He then goes on to explain how she really can be managed better. This is not the treatment that she should be getting. I said, ‘can I come to see you?’ I need you to see a neurologist first. This was a neuroendocrinologist. And then I got up to CHOP (Children’s Hospital of Philadelphia) to the other neurologists that I wrote the email to. She immediately said, come up, we can help. And it was the first time witnessing a two-and-a-half-hour intake. It was the first time that I felt, as did my daughter, that, Oh my God, there’s hope. Now you can get the right therapies. So that’s a year and a half in before anything happened. Then it was a matter of finding all the kinds of doctors at our home to take care of her. This was the basis of how I started building the dashboard because I had to keep communicating what was going on to all these therapists and doctors, and rehab specialists.

Health Hats: And you got to get those binders down to a page?

Lynne Becker: Exactly. Totally. But they all loved it. I will say this. They all wanted these copies, so that was good.

From mom in trouble to the business of advocacy

Health Hats: OK. I guess what I’m interested in this minute it that you made an organization, an advocacy organization. You went from being the mom of somebody who was struggling to deal with whatever she was dealing with to thinking about the larger community of people with TBI. You got this cool logo like that’s a business thing to do. So how have you built that, that outwardly facing business of power of patients?

Lynne Becker: Yeah, thank you. That’s a great question. I give the impression that I am just an advocacy group on my website, to empower and educate people and their caregivers, but it’s much more.

Health Hats: Yes. You don’t fool me.

Lynne Becker: Initially, when I did that, I didn’t have my dashboard live. I also had not been able yet to figure out how I now take this very valuable dashboard and monetize it. Because, and how do I do it so that I can keep it alive and support myself? I did think I was the only one going through this craziness. When we kept going from doctor to doctor until I realized there are tens of millions of people, I’m not an anomaly. And then that was the,

Health Hats: Isn’t that a great moment?

Lynne Becker:  Yeah. Yeah. That was the other tipping point for me because I’m like, this is crap. There’s no research going on, and it’s your brain. It’s what runs your whole body? Nobody was in the TBI advocacy space, and that’s how I ended up getting my page one SEO (Search Engine Optimization) rankings. I did all the research behind the scenes. That’s how I can be found. Otherwise, nobody’s going to know who I am. Once I did that, I started creating all the blogs. So, working off my clinical trial research experience where I would do patient recruitment and education, I started taking that. I started putting it out there socially through Facebook blogs by reaching out to different brain injury groups and talking to people who would listen. We started at zero. I have self-funded the whole thing at this point, but we started at zero in July and then we started with Facebook and Twitter, and Instagram. Again, I was no digital media expert, but now with our followers, we do everything privately on our dashboard, but we let people like and follow us. We have a little over a thousand across the platforms. And this is only since like July 5th, 2020, when we started. Yes. I just started the company last year.

Health Hats: Oh my God. You could have fooled me. Wow. It looks more mature than that. I know that’s not the right way to say.

Partnering with the Veterans Administration

Lynne Becker: Thank you, I appreciate that. I took the first six, seven, eight months building it, testing it, building the dashboard. I’ve done this for my career. I knew how to do that. I worked off my experience as a caregiver, and then worked off my experience when I managed the TBI portal for the US government and the soldiers. That was how I started to reshape what I was doing.

Health Hats: Wait, back up, what’s with the soldiers? I missed that.

Lynne Becker: When my daughter was injured, I got fired from my university job because I had to be her full-time caregiver. They would not allow me to work remotely. I had to eventually figure out how to support us and find a job. I ended up going to work for the Department of Defense in a subcontract position. I was one of the team that built these massive data warehouses for the Defense Health Agency. I ultimately was recruited to redesign the VA system. I was then brought over to manage the traumatic brain injury portal for the special OPS teams for the government.

Health Hats: Wow. What an opportunity.

Lynne Becker: Yes. I saw the mappings of the soldiers, and I thought this is my daughter. Who is mapping this? I need to find this person. That was my motivation. It was very selfish. I wanted this doctor to treat my daughter, and fortunately, I got there, and I started working with the whole project, and I even found therapies for my daughter that work well, and we’re not being told to me to use for her—one of it being QEEG, which is biofeedback.

Health Hats: Now wait, say that again because I didn’t get it.

Lynne Becker: QEEG is a biofeedback therapy.

Recognizing success – pause and trust

Health Hats: I’m going to ask you a different question. Now, when you’re doing this Power of Patients thing, how do you recognize success? What’s going to happen that you feel like you hit a home run?

Lynne Becker: Man. That’s a great question. Can I answer it in two parts? My mission is to empower patients with TBI and their caregivers. Success is when I get an email like today from a patient who attended our webinar, loved our demonstration of the dashboard. She’s from St. Jude’s Hospital and she herself is a survivor. She can now set up an appointment with the vision therapy doctor because she knew she had vision problems. But her neurologist kept saying, no, you’re fine. She took the virtual webinars. So that’s a success.

Health Hats: OK. This is the success of one person who took a one-step on a solid path. OK. Go ahead.

Lynne Becker: Other successes are around patient empowerment. I had another patient say I stopped running to the ER because I could figure out a pattern of my migraines.

Health Hats: Precious. I so get it. Absolutely.

Lynne Becker: Yes. And then now a mom caregiver, a veteran herself, her youngest daughter in a coma for a year introduced me to the Elizabeth Dole Foundation because caregivers are what they call hidden heroes. And they are creating an initiative where caregivers and providers in the VA talk to each other. That’s the success. They have seen my dashboard

Health Hats: That’s a monster success, a system success, right?

Lynne Becker: So, that’s the two parts. My successes are all for the patients, motivating me to keep pushing it with that army behind me. I want us to become this force as we move up the health care chain.

Health Hats: OK. So, people are dealing with different flavor challenges, but it sounds somewhat similar. Something happened to them; something happened to a family member; something happened to a loved one. They made it through the acute phase with great difficulty, and now they have the energy to give back. That sounds like what you’re doing. What do you think if you were going to give people those people two lessons that you’ve learned that you wish you had known six months ago? What might some of those be?

Lynne Becker: The first lesson: as a caregiver, lots of times you want to quit. Don’t quit, pause. Pause and regroup for yourself because honestly, you are the lifeline for that person who needs you, but you yourself must take care of yourself.

Health Hats: Self-care, man, isn’t that monster. I’m with you a hundred percent. I think now in this COVID world with all these healthcare workers, whether they’re licensed or not licensed professional or not professional, they have to take care of themselves because we need them. Yes.

Lynne Becker: Pause.

Health Hats: I like that. Pause. That’s a good one. Pause.

Lynne Becker: You can’t leave. You can’t quit, but you do need a break. That’s especially important. The second lesson is to trust yourself. I knew they were so siloed in their approach and they weren’t looking at the big picture. Again, to the beginning of our conversation – what’s the difference in an EMR? The EMR is three months, six months, nine months, right? This is a timeline. Yes. Trust yourself. Something isn’t right. Pause and trust.

Health Hats: I like that. I like that a lot. What should I have asked you that I haven’t?

Lynne Becker: What should you have asked me? I don’t know. You did a pretty darn good job. Go to the website, send me a message. We have some conversations going on with the Michael J. Fox Foundation. They’re looking to go into the strong correlation between traumatic brain injury and people with TBI developing Parkinson’s, same with Alzheimer’s. Interestingly, we have a ton of stroke people who are now finding our website and starting to use it. Don’t be afraid to ask me to build out a platform-specific to an indication because that’s what I do easily. I want it to be robust enough to use for multiple sclerosis. To apply to everything. I don’t have anything else to share. Just go to the website, spread the word.

Health Hats: Thanks. Yeah. All right. This is great. Oh, good. Thank you so much. Listen, I appreciate it so much.


Research often feels like taking snapshots in a rear-view mirror when people’s lives are more like movies on a windshield – continually move forward. The methodologies of research prefer the single moment, back-looking approach. When I participated in Merit Review for PCORI (Patient-Centered Outcomes Research Institute), I felt frustrated that rehabilitation studies seldom gained approval. Merit Review is the review and scoring of comparative effectiveness research funding requests. Since individuals get better (rehab) differently, the comparison of approach A versus approach B can be challenging to design. Rehab is itself a persistent experiment of learning about and reinforcing new abilities. That experimentation includes learning what works and when it doesn’t, trying something else. Lynne Becker’s dashboard and trigger approach give me hope. I need to explore that dashboard and learn more about it.

Talking with Lynne reminds me that clinicians and researchers sometimes label people as ‘patients and caregivers,’ forgetting that we come to the interim roles of patient and caregiver as fully formed experts in whatever we’re expert at. Expert statisticians, expert carpenters, expert bus drivers, expert homemakers. Imagine if we had screening tools to quickly learn about patient and caregivers’ expertise and then used algorithms to designed care plans to maximize that expertise.

Lastly, I hope we, as a nation, can soon shift our focus from the circus of Washington and national politics to the struggles of everyday survival in this frightening, hungry pandemic.  We have so much work to do for each other.  Be safe and relatively sane. Onward.


Power of Patients

International Statistical Classification of Diseases and Related Health Problems (ICD), a medical classification list by the World Health Organization (WHO)


CDC Heads Up program

Concussion, the Movie

Elizabeth Dole Foundation

Michael J. Fox Foundation

PUBMED QEEG link: Routine and quantitative EEG in mild traumatic brain injury – PubMed (nih.gov)
Company I used for Natalie: [she regained 38% of her brain function !]
A Natural, Drug-Free Approach | BrainCore Neurofeedback (braincoretherapy.com)

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Marketing & Communications Rockstars Wanted! https://participatorymedicine.org/epatients/2021/01/marketing-communications-rockstars-wanted.html https://participatorymedicine.org/epatients/2021/01/marketing-communications-rockstars-wanted.html#respond Sun, 10 Jan 2021 14:09:40 +0000 https://participatorymedicine.org/epatients/?p=21809

The Society for Participatory Medicine (SPM) is looking for some rock stars to join our Marketing committee and to help change the world. If you would like to volunteer or know someone who may be interested, please take a look. We are a fun, high energy team committed to launching a campaign to spread the […]

The post Marketing & Communications Rockstars Wanted! first appeared on SPM Blog.]]>

The Society for Participatory Medicine (SPM) is looking for some rock stars to join our Marketing committee and to help change the world. If you would like to volunteer or know someone who may be interested, please take a look. We are a fun, high energy team committed to launching a campaign to spread the word on the Participatory Manifesto, but we need help!

Please pass this along to anyone you think may be interested.


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Person-First Safe Living in a Pandemic: Part 2: Finding Guidance https://participatorymedicine.org/epatients/2020/12/person-first-safe-living-in-a-pandemic-part-2-finding-guidance.html https://participatorymedicine.org/epatients/2020/12/person-first-safe-living-in-a-pandemic-part-2-finding-guidance.html#respond Mon, 21 Dec 2020 13:18:21 +0000 https://participatorymedicine.org/epatients/?p=21805

How do regular people find evidence-informed guidance to help make decisions about safe living in a pandemic? Questions answered when needed in a useful manner? Part 2 in this Person-First approach. Join our journey. Proem A few weeks ago, on this podcast, I introduced you to a project I’ve been working on about Person-First Safe Living […]

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How do regular people find evidence-informed guidance to help make decisions about safe living in a pandemic? Questions answered when needed in a useful manner? Part 2 in this Person-First approach. Join our journey.


A few weeks ago, on this podcast, I introduced you to a project I’ve been working on about Person-First Safe Living in a Pandemic. I share it with you for several reasons. First, I focus my days on learning how people make health choices and decisions in real-time. To further that, I commit to improving the alignment of questions people ask and the available research. What better context to explore than this pandemic? Just as the issues and tensions of health equity and systemic racism exist all the time, the problem of finding trusted evidence-informed guidance heightens during this pandemic. Second, I’m fascinated by the challenge of communicating what works for people and what doesn’t, specifically, communication leading to action. Actions mean changes in behavior and practice.  I endlessly perseverate about end-users, audience, medium, message, and methods. Third, preparing the written material and the podcast episode helps us, this small and mighty band of volunteers, reflect on what we’re doing and why we’re doing it. This exercise of writing and recording gives us material to share in various venues and media. On the one hand, the details of how the sausage is made can be unappealing and dry; on the other hand, I’m so excited about it, I must share it with you. OK, here goes, Part 2.

Finding Information about Safe Living in a Pandemic

In Part 1: What Could Go Wrong? of our four-part series, we introduced Carlos, an ICU nurse treating COVID-19 patients. He struggles to manage COVID-19 and life outside of the hospital with his sister and mother. We began to examine the question: How can regular people, like Carlos, find up-to-date, trustworthy answers to questions they have about living safely in a pandemic – finding answers when they have questions in a manner useful to them?  We shifted from patient-centered thinking to a person-first point-of-view. Person-first, meaning we start with understanding people and hearing their questions and concerns, and then looking for the answers. We recognized that our work’s end-users are community resources who we define as relative experts with at least a 15-minute advantage of knowledge and expertise both with and without credentials. Our audience is experts in the knowledge management (computerized decision support and library science) fields.

We asked how the research and knowledge management industry can help regular people and communities find evidence-informed guidance to live safely?  In Part 1, we introduced ourselves as a mighty band of volunteers and described the early steps of our journey. We said that we knew we would hit a home run when interested – no, excited – people come on board, work with us, and carry the project to a sustainable conclusion. We have had new people and organizations join us in the few months we’ve been working.

In this Part 2, we ask: How can Carlos and his community resources find evidence-informed guidance to help answer the questions he and his family ask – again, in a manner useful to them, at the time they need it? So, what questions might they have? Who might they ask? How can they find what they need?

Questions people ask

As we became acquainted with people like Carlos, we listened to the questions they asked about COVID-19. They asked about treatment, testing, work and school, transportation, money – safe living – in a pandemic. Everyone sought to find answers in the context of their conditions, environment, and circumstances.  They sought options to manage their lives and health, not just diagnoses, and treatment. Overloaded would understate our feelings after listening to the massive scope of questions about COVID-19 we heard people asking – paralyzed may be more accurate. So, we elected to focus on testing – no reason beyond a possible common thread and the participation in our group of Michael Waters, a testing expert with the FDA. We took advantage of his expertise. We listened informally for a week – to family, friends, colleagues, social media, popular media, wherever we went – for questions people asked about COVID-19 testing. We seldom needed to bring up the subject. It was a routine topic everywhere, validating our unscientific choice of focus. In that week, we cataloged 75 different questions about testing that we distilled down to eleven.

  1. Who needs a COVID-19 test?
  2. How long after I test positive do I have to be quarantined?
  3. How much will a COVID-19 test cost me?
  4. If a test shows that I have antibodies to COVID-19, am I safe?
  5. When will I be able to get a test that I can do at home?
  6. How often should I get a test?
  7. How good are tests?
  8. Who, besides me, will get my test results? What will they do with it?
  9. What is my employer doing about testing? What if they don’t have a plan?
  10. Am I being enrolled in an experiment?
  11. If I get an antibody test and have antibodies, do I still need to wear a mask?


Finding answers

Next, each person on our team chose one question from the list and spent a week looking for answers in academic literature, popular and social media, and from lay experts, community resources. We felt sobered and disappointed at the gap between people’s questions and available, reliable information to answer those questions. Useful evidence-informed guidance was exceedingly difficult to find. Internet search results ranged from a firehose of information to incomprehensible resources. We heard overwhelming distrust in information in every flavor imaginable. Some sources trusted Dr. Fauci, some President Trump; some trusted the CDC, others didn’t – all over the map.

We would all benefit from a means to quickly focus, laser-like, on the information we need (searching) when we need it, in a manner we can use.  Perhaps experts in computable decision science and library science could help with findability. What followed was an exercise in classification, metadata, and tagging.

Classification systems and search engines: PubMed, Medline Plus, and Google

Traditionally, academics and scientists use NLM (National Library of Medicine) resources, including PubMed, and other classification systems to help organize and search for academic literature. Some regular people – not clinicians, academics, librarians, CDS (clinical decision support) professionals – are comfortable searching using these more traditional, often less user-friendly means. Others use a search engine to type a question or a few words into an internet browser or ask someone (a crony, neighbor, respected person, community resource, etc.). Either way, the range of responses starts with nothing (in rare cases) and ends with way too much, almost all of which is non-specific and may not align well with the original question.

Carlos might search for COVID-19 Testing for ICU Nurses in PubMed, Medline Plus, or Google. Each search would return quite different results, often changing daily or more frequently.


  1. COVID-19: A perspective on Africa’s capacity and response
  2. Use of personal protective equipment against coronavirus disease 2019 by healthcare professionals in Wuhan, China: a cross-sectional study
  3. Effect of Hydrocortisone on Mortality and Organ Support in Patients with Severe COVID-19: The REMAP-CAP COVID-19 Corticosteroid Domain Randomized Clinical Trial

Medline Plus

  1. A Guide to Surgical Specialists
  2. For Parents: Multisystem Inflammatory Syndrome in Children (MIS-C) associated with COVID-19
  3. What Is a Ventilator?


  1. Guidance for Healthcare Workers about COVID-19 (SARS-CoV-2) Testing
  2. Clinical Care Guidance for Healthcare Professionals about Coronavirus (COVID-19)
  3. A Texas ICU nurse is hospitalized with COVID-19 after testing negative


We also found marked variation in results among different browsers, Firefox, Chrome, Bing, DuckDuckGo. Of course, if we changed a word in the search, the results were different, some useful, most not. The reality, of course, being that usefulness is critical but often hard to achieve.

Custom searching for usefulness – For me, about me, by me

Anyone searching for something in a library, bookstore, website, bureau, or closet hopes they find order rather than chaos – the right stuff, at the right time, in a manner that makes sense—socks in the sock drawer, fiction with fiction. When we think about this as accessibility, we refer to a language I understand, a complexity that matches my experience, media I am comfortable with, time it takes to consume, and the intended audience. We also need a summary to help make a quick decision or judgment, so we do not have to waste our precious time. We might want to search for or filter for specific subtopics like K-12, college, travel, etc. These are general categories. Tagging is further search refinement. In the end, we want to search for information about a question we have that relates to us and our situation and find meaningful results. This categorization and filtering help successful finding. Next, let’s talk about metadata (data about data) and tagging.

Metadata, data about data, can help us organize

How can we use decision support tools and library science to help organize and help us find the right stuff at the right time in the right manner?

As no-budget volunteers, we could not afford to reinvent the wheel. We considered existing and new metadata that might be easily automated. Existing metadata because decision scientists may have already set standards. We considered using crowdsourced approaches (e.g., Wikipedia) to generating relevant metadata, finding a cadre of people who recommend evidence-informed sources of information, and assign metadata to their recommended resources. We looked to common clinical decision support (CDS) standards since this is where our work started and then worked on adding what is missing. Here are some metadata elements we’re testing now:

  Data Element Data type Response examples
Accessibility Minutes to consume number 3 minutes to watch, 10 minutes to read
Languages check box, short answer English, Spanish, other (fill in)
Readability text Grade 6, Grade 12
Media type check box Text only, multimedia (audio, video, graphic)
Location (Country, State, Zip) check box, short answer Not specified, US, State
  Category check box, short answer health, children, older adults, employment, restrictions, testing, vaccines, school
  Short summary short answer (240 characters)
Tags  Fill in, frequently used  Infants, preschool, >75, essential workers, masks, quarantine, home testing, one dose tests, college


So, there is good news and bad news in what we’ve done here. We’ve found intersections with other disciplines; we’ve seen organizations and individuals attempting to solve similar problems. We’ve identified some good examples of what we need to do next. However, the work isn’t easy or straightforward.


Tags, custom sub-categories can help people find what they are looking for when browsing or searching, think a navigation tool, a GPS. Some platforms use hashtags; some use free form tags; some have internal tags. Find an example at Prescription to Learn that uses exciting examples of navigation tools. Check it out.  Some tags may be more useful than others. Successful tagging depends on how people think and search; therefore, it includes much redundancy. It’s hard to imagine the full automation of tagging; after all, we are our own best curators of the information we need. So, who is responsible for tagging or has the time and resources to curate all the information out there? We think perhaps useful tagging could and should be crowdsourced—all good thoughts for further exploration.

Taking action – partnerships

Recently we agreed to partner with EBSCO to use their Stacks Content Management System as a library of person-first COVID-19 resources. This content management system provides us with a sandbox, a site, to test our findability methods and to grow our partnerships. It also allows us to test out our ideas about crowdsourcing the tagging process. We accepted this generous offer because a member of our team, Kayla Nelson, stepped up to learn the platform and begin entering resources.

The art and science of tag creation feel daunting, a tension between standards (a set pool of tags) and person-responsive (people think differently). We found a class of students in healthcare communication who will help us begin to crowdsource tagging.

What’s next? (More questions, some answers.)

Our mighty band of volunteers continues to find people and organizations dying to grow this discovery process, find funding, build, or join coalitions and move it along. In the third post, we will continue to share our unfunded discovery journey, moving on to Trust and Recommendations. We seek to promote a dialog within the research community and between researchers and laypeople and their communities. Here we are planting a seed.

Please communicate with us on info@safeliving.tech, use #safelivingpandemic on Twitter, or check out our website still in development https://www.safeliving.tech/


You are part of our experiment as a reader and listener. What do you think? What audience are you? Does this episode resonate? Does it motivate you to do anything? With which audiences should we share this? Too technical, not technical enough? Interesting? Boring? Share your thoughts and advice.  We need it. Thanks. Onward.


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Leadership Transition, Part 2: Meet Mary Hennings https://participatorymedicine.org/epatients/2020/12/leadership-transition-part-2-meet-mary-hennings.html https://participatorymedicine.org/epatients/2020/12/leadership-transition-part-2-meet-mary-hennings.html#respond Mon, 21 Dec 2020 02:54:04 +0000 https://participatorymedicine.org/epatients/?p=21802

Hi Fellow SPM Members, As a follow up to the note from Danny Sands on Monday, I would like to provide you with an update on some of the exciting strategy work a group of board members and others undertook this summer and fall. Much has changed in the world at large and in healthcare, specifically […]

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Hi Fellow SPM Members,

As a follow up to the note from Danny Sands on Monday, I would like to provide you with an update on some of the exciting strategy work a group of board members and others undertook this summer and fall.

Much has changed in the world at large and in healthcare, specifically this year. The pandemic abruptly altered how medicine is practiced and experienced, how many think about the healthcare system and of course, the lives of patients, healthcare professionals and caregivers. The practice of participatory medicine has never been more important. The opportunity for SPM to play an even bigger role in spreading that practice is tremendous. I am heartened by the strategy work done to reignite the energy and direction of SPM at a time when it could not be more important.

There will be more to come, but some of the developments to date resulting from the strategy work in addition to the organizational changes Danny referenced are as follows.

Formation of three strategic work groups, each focused on distinct areas

  1. Nexus Group: Building a sense of SPM community and raising visibility of SPM by creating a nexus of support and organization for activities and initiatives proposed by organizations and members. (Team members: Helene Clayton-Jeter, Jan Oldenburg, Sarah Krug, Lynne Becker, Danny Sands, Joe Ternullo)
  2. Galvanize Group: Galvanizing our members and others around the practice of participatory medicine, at first creating awareness of the Participatory Medicine Manifesto through pledges solicited in an awareness and spread-the-word campaign. (Team Members: Eric Bersch, Judy Danielson, Kevin Freiert, Matthew Holt, Amber Soucy)
  3. Energize and Retain Group: Retaining members and energizing the board by regularly and transparently sharing strategies and plans with members, revamping the governance and management structure and solidifying the image of SPM. (Team Members:  Brian Mack, Geri Baumblatt, John Grohol, Lynda Mitchell, Debbie Cobb, Peter Elias, Mary Hennings)

Hiring an Executive Director

Thanks to the continued generosity and support of the Mitchell Foundation, SPM is able to bring an Executive Director onboard to help grow SPM’s impact, thought leadership, and its value to members. A search is about to begin, overseen by a search committee that we are forming. Expect to hear more as we reach out to members for referrals and leads and to provide updates. A position description will soon be posted on the website.

Formalizing SPM committees and committee structure, including:

  • Membership, led by Brian Mack and Mary Hennings
  • Marketing, led by Judy Danielson
  • Nexus [Content and Programs] led by Joe Ternullo

As a part of our strategy work, we are reviewing SPM’s governance structure, to be sure we have the structure we need to increase SPM’s impact.  We will add committees as needed to get the important work of this volunteer organization done.  Organizations like SPM often have a Governance Committee, and that is an example of a committee we could add.  We will be doing outreach to solicit volunteers from the SPM community with the skill sets and energy to serve on the committee.  Please keep an eye out for that outreach.

To conclude I would like to acknowledge Danny’s transition to the role of Chief Advocacy Officer and Chairman Emeritus. As we look to position SPM as a thought leader in Participatory Medicine and put a leadership face to the world, Danny is the perfect choice. [He will be great!] His tireless work in co-founding and advocating for SPM, his distinction and reputation in healthcare and his background in medicine and medical technology will well serve SPM as we grow in numbers and influence. As the interim chair, I look forward to working with Danny in his new, exciting role.

I wish all of you a safe, healthy, and happy holiday season and thank you for your dedication to SPM and its commitment to transform the culture of healthcare.

Mary Hennings
Interim Chair

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Leadership Transition, Part 1 https://participatorymedicine.org/epatients/2020/12/leadership-transition-1.html https://participatorymedicine.org/epatients/2020/12/leadership-transition-1.html#respond Fri, 18 Dec 2020 00:33:36 +0000 https://participatorymedicine.org/epatients/?p=21792

Leadership transitions are an essential part of the maturity of any organization. I have been board chair of Society for Participatory Medicine (SPM) for many years and now it is time to pass the torch to Mary Hennings so that I may become our first chief advocacy officer. Allow me to explain. As many of […]

The post Leadership Transition, Part 1 first appeared on SPM Blog.]]>

Leadership transitions are an essential part of the maturity of any organization. I have been board chair of Society for Participatory Medicine (SPM) for many years and now it is time to pass the torch to Mary Hennings so that I may become our first chief advocacy officer. Allow me to explain.

Incoming board chair Mary Hennings

As many of you know, this year the board has undertaken a process of self-assessment and renewal to prepare us for future stability and growth. To help with this, we engaged Lisa Thompson from Sturbridge Growth Partners, who is now finalizing her deliverables. At various points, Lisa involved many members, both on and off of the board.

The project comprised an ambitious listening and information-gathering exercise to understand our challenges and opportunities, a revision of our strategic plan, a review of governance and related structural issues in collaboration with our governance committee, a staffing structure and plan that will culminate in our hiring an executive director, a financial model and forecast, and an implementation plan. More information will be forthcoming on all of this.

Twelve industry leaders founded the Society in 2009, and John Grohol and I are the only founders who remain on the board. At the founding, I was elected to be founding co-chair (along with e-Patient Dave). I have continued to serve as either president or chair ever since.

While some continuity of leadership is helpful in an association, a healthy churn of leadership is essential. I felt a pang of joy in 2011 when I passed the presidency to Sarah Krüg, who was our first non-founder president. Despite my willingness to pass the role of chair to someone else over the past nine years, we had no takers (nor did we have a process for succession), although I did serve part of that time with Dave and then with Joe Ternullo as vice-chair.

As Lisa reviewed the organization’s governance, it became clear that I did not have the bandwidth to split my time between the operational role of board chair and the externally facing role of increasing exposure for the Society, forging relationships, and advancing our mission. The board agreed that my time would be better spent in a new role of chief advocacy officer, but making this change would leave the position of chair vacant.

Over the past several years we have developed a tremendous bench of leaders. One such leader is Mary Hennings, who has been leading SPM as president-elect and then president for just over a year. Mary has done stellar work for the Society and, as we will likely be phasing out the duplicative president’s role, she has been willing to assume the mantle of acting board chair. At a recent board meeting the board unanimously approved this transition.

Having worked closely with Mary for a couple of years, I am supremely confident in her capabilities and potential as board chair. Moreover I am excited to be able to serve the SPM as its Chief advocacy officer (abetted by the stellar marketing team, ably led by Judy Danielson).

It has been a great privilege serving as your board chair. But I’m thrilled about this transition, which marks a new chapter for the Society. While you will be hearing more about the coming changes in Part 2, I wanted to communicate this news as soon as possible.

As always, feel free to contact me anytime with any questions or concerns.

Danny Sands

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OpenNotes site upgrades its literature search, to help authors and educators find relevant papers https://participatorymedicine.org/epatients/2020/12/opennotes-site-upgrades-its-literature-search-to-help-authors-and-educators-find-relevant-papers.html https://participatorymedicine.org/epatients/2020/12/opennotes-site-upgrades-its-literature-search-to-help-authors-and-educators-find-relevant-papers.html#comments Thu, 10 Dec 2020 19:36:31 +0000 https://participatorymedicine.org/epatients/?p=21779

As regular readers know, our Society for Participatory Medicine has always been a strong advocate for the OpenNotes movement as a key enabler of patient power.  As co-founder Dr. Danny Sands often says in his speeches, “How can patients participate if they can’t see what I see?” Not surprisingly, this site has often blogged about […]

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As regular readers know, our Society for Participatory Medicine has always been a strong advocate for the OpenNotes movement as a key enabler of patient power.  As co-founder Dr. Danny Sands often says in his speeches, “How can patients participate if they can’t see what I see?” Not surprisingly, this site has often blogged about OpenNotes, starting with the initial research study from 2010-2012 that proved the world doesn’t end when patients see their notes. To the contrary, good things happen: OpenNotes: The results are in. GREAT news for patient engagement.

A lot more research has been piling up since that first paper ten years ago, broadening the academic knowledge base, further establishing what OpenNotes co-founder Tom Delbanco refers to as “a new medicine: it has benefits, side effects, indications and contraindications.”

Last week OpenNotes launched a valuable new tool on their website: a way to search and sort nearly 10 years of research on open visit notes. Checkboxes make it possible to filter results by subject, type of publication, and author last name. Search results appear as an annotated bibliography:

Montage of search results for category “patient experience” (click the image to see this search live)

More submissions are invited: “We’re excited about the search tool and want to be as inclusive as possible by adding more papers,” said Liz Salmi, the Senior Strategist of Research Dissemination for OpenNotes (@TheLizArmy). “The search tool may always be a work in progress because we manually add each publication—we read every paper before including it, to ensure its scientific validity, its relevance, and proper tagging. We encourage anyone publishing the topic of open visit notes to send us a link or PDF of their paper so we can consider it for inclusion.”

Salmi said the group has plans to expand on the research tool by including publications not authored by individuals associated with OpenNotes, and adding more search filters to select publications that are open access or no longer behind a paywall. 

Below are some additional thoughts. Play with the OpenNotes Research tool here: https://www.opennotes.org/research/

Events and more

A key part of changing any field is not just doing the research but disseminating it – spreading the word. OpenNotes takes this seriously – in addition to the literature search, they offer events aimed for different topics and audiences. Current samples:

There are also sub-sites with information designed for both sides of the participatory relationship:

OpenNotes for Patients

OpenNotes for Health Professionals

My wishlist for the search feature

As Liz said, this is just a start. My suggestions for enhancements:

  • I’d love to see it link to the article’s page on PubMed or Google Scholar so I can see what other papers have cited it.
  • The search results page displays the articles, but I’d love to have it also display a count (“3 articles found”)
  • I’d love it if the search box also searched the metadata, not just the article text.  (I searched for Salmi’s name and got no hits; I had to select her in the author list.)

Have more ideas? Add them in a comment.


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Engage! Community Organizing, Coalitions & Infrastructure https://participatorymedicine.org/epatients/2020/11/engage-community-organizing-coalitions-infrastructure.html https://participatorymedicine.org/epatients/2020/11/engage-community-organizing-coalitions-infrastructure.html#respond Mon, 30 Nov 2020 13:31:04 +0000 https://participatorymedicine.org/epatients/?p=21776

Healthcare activists need communities to affect change. Considering public-private partnership with NCQA’s Digital Measurement Community with Ben Hamlin. Proem Activists seek to inform and nudge change for the better – political, social, cultural, healthcare, service change. I’m a patient-caregiver activist learning and sharing what works to make safe health choices and decisions, now in these […]

The post Engage! Community Organizing, Coalitions & Infrastructure first appeared on SPM Blog.]]>

Healthcare activists need communities to affect change. Considering public-private partnership with NCQA’s Digital Measurement Community with Ben Hamlin.


Activists seek to inform and nudge change for the better – political, social, cultural, healthcare, service change. I’m a patient-caregiver activist learning and sharing what works to make safe health choices and decisions, now in these times of a pandemic. Activism involves groups of people, communities – few to no changes arise from a single person. Successful, sustainable community activism depends on building coalitions and infrastructure.

A couple of weeks ago, I introduced a new community movement: Person-First Safe Living in a Pandemic. We need to build coalitions and infrastructure. Actually, we need partnerships (coalitions) to build infrastructure because we have no funding source. Movements need infrastructure, whether they have a funding source or not. So, we seek partners who can offer infrastructure. What is infrastructure? For Person-First Safe Living, infrastructure includes a central point of contact, like a website; channels of real-time and asynchronous communication – real-time, like Zoom; asynchronous like Facebook, Twitter, email; and a repository of resources – a searchable library like Google Docs, Wikipedia, Confluence, SharePoint.

Coalitions and infrastructure aren’t free, even if you don’t have money to spend. They require time and energy – people – while hopefully wasting as little time and energy as practical. Time and energy are their own kind of expensive. As you might imagine, coalitions bring people and organizations together, aligned for a common purpose, perhaps many common purposes.  I will share our coalition and infrastructure building journey from time to time in these Health Hats podcasts.

Again, sustainable grassroots change projects, whether cultural, health, service, products, or research implementation, are all community action opportunities. Today, I’m considering the challenge of creating and maintaining a communication platform for our movement.  We need places to meet. We use Zoom – low maintenance, inexpensive – several participants have accounts – no added cost. We’re standing up a website on an existing web host server with room to spare. Next, we need a place for people to congregate virtually and speak to each other.  We could use the WordPress website with a forum plugin. A plugin is added programming bolted on to a website that’s ready to register and host people. The upside is that it’s cheap and we could manage it. The downside is that we would have to manage it. We received an offer to use a hosted forum platform, the Digital Quality Forum, created by NCQA (the National Committee for Quality Assurance). Let me give you some background about NCQA. NCQA began in the early 1990s to measure and accredit health plans. Accredited is a seal of approval. I led a project with a behavioral health managed care plan for NCQA accreditation. NCQA developed a system called HEDIS, which measures health plan performance. Little did I think that I would be circling back to NCQA as a patient-caregiver activist. Who knew?

Introducing Ben Hamlin

So, let me introduce Ben Hamlin, the Senior Research Informaticist in the Department of Performance Measurement at NCQA, specializing in clinical quality, context-specific decision support, and the use of predictive analytics for quality improvement. Ben currently co-leads NCQA’s Digital Measure Roadmap initiative, which is committed to improving the generation of knowledge tools derived from the process of quality measurement. I’ll let him tell you about that work.

Health Hats: Good morning, Ben Hamlin. Good to see you.  I just have to say that I’m looking at Ben Hamlin in the Millennium Falcon cockpit. It’s impressive. Ben, how do you introduce yourself? What do you want people to know about you?

Ben Hamlin: I like to be known as a disruptor. My career has always been focused on the end-user of this information. I’m at NCQA working in quality for many years now. I’ve managed to maintain that perspective through that period. I’m a bit of a troublemaker, pushing boundaries.  My real focus has been on the quality of healthcare in the US. It’s been an underlying aspect of my career ever since I got into health policy over two decades ago.

The disrupter

Health Hats: What have you disrupted recently?

Ben Hamlin: During the last several years, I’ve pushed to change how people think about quality measurement. We have had a technological revolution globally. Healthcare tends to be a little behind the curve in terms of taking advantage of all the opportunities this technology allows us to make our lives better. I try to open people’s eyes that the quality measurement establishment has demonstrated successfully that quality is important. All the rules for Obamacare, healthcare reform involved quality value-based care with quality as a major aspect of care delivery. So, we’ve been successful in making quality a primary concern, but we haven’t kept up technologically with the things we could do better in quality. Now that we’ve got it in front of everybody, it is an extraordinarily complicated thing. There are many moving parts. There are many people involved. It’s hard to remove the human factor from quality, and we shouldn’t necessarily do that. We need to put the humans where they can take advantage of this without removing them entirely because we’re treating humans obviously in healthcare. We want to make sure that we never lose that perspective. That’s what I’m talking about. The end-user of this technology of this quality information – that’s knowledge that we generate from doing quality measurement – those end users are a number of people, but the people most forgotten are patients.  We’re providing patients with information, telling them how to get better healthcare and how they might improve their quality of life.

Health Hats: Okay. I’m not sure I hear the disruptor part.

Ben Hamlin: People don’t like change. The quality measurement establishment is well-established. Much of the rules of how we do it are built into federal legislation, which takes a lot to change. I’m pushing for some fairly radical change. The quality measurement environment has been built upon the retrospective report card model that presents you with dashboards and report cards at the end of the process. But that doesn’t help you provide better care to patients in a forward-thinking manner,

Looking in the rear-view mirror

Health Hats: Looking in a rear-view mirror?

Ben Hamlin: It’s a rear-view mirror. ‘Oh, I should have done better. Maybe I’ll try harder next time around. The clinicians and patients are too busy in day-to-day care to think on top of what they’re already doing. That knowledge is helpful, but unless you’re motivated and have many resources available, it’s not going to help you think forward. So, trying to shift the entire quality measurement environment to be a helpful tool to people who are busy and avoids information overload. We can winnow through volumes of data using this technology and the quality measure specifications that guide that data to where it’s most useful; when it’s most useful; and needs to be updated. They’re not very efficient right now. They’re still very clunky and medieval. I’m looking to a Renaissance, an age of enlightenment. I call it immune quality measurement. We’re still using medieval specifications but trying to deploy them, just by automating them, which is kind of steampunk if that gives you an analogy.

Health Hats: Quality measurement and all these data often feel like it’s not the right data. It’s claims data, electronic medical record data. It misses the boat. That’s a challenging thing to disrupt.

Ben Hamlin: Yep.  I’m not saying that we should lose that data. We should use it. It is a valuable source of information; both of those two sources are. But they’re not the only sources of information, right? We are generating ourselves volumes of data every day through all of our interactions, wearables, home health monitoring devices, and even things like patient assessments that you can do on your iPad at-home tracking – your weight, physical activity, and diet…

Health Hats: Your symptoms.

Ben Hamlin: You can track your symptoms. You can also track all these things using these tools that clinicians use when they see you in the office. They’ll ask you questions and record these things instead of generating a view of you. We can do that on our own and help with our self-management by providing how we’re feeling today and what we might want to do differently, or how we want to set goals for what we want to do. That’s not in that administrative data; it’s not even in claims data. There’s not a lot of it in the EHR data either. Setting care plans with patients is not typically documented such that it could be reused for some other reason. In the notes of a patient visit and a provider and a patient can sit down and review those notes and say, we discussed this last time.  How are you today, and what do you want? Has anything changed since last time? But that’s a very human interaction that the technology can’t help you with. Whereas if you brought in those apps that help check your goals or check your progress against goals daily, that might keep you more engaged. That might keep you more interactive instead of every month or every three months, every six months, whenever you’re seeing your provider.

Health Hats: The other part that fits in with the forward-thinking is that each of us is an experiment of one. We’re trying stuff to help us feel better, to function better, to have more satisfaction in our lives.  We don’t use data to help us understand these populations in these circumstances; this worked, this didn’t work. We’ve done the research, and it seemed that A was more likely than B to be effective. But we don’t keep going and say, did it really?

Ben Hamlin: Yeah. One of the disruptive things in quality measurement is that in the current paradigm, we distill all these people into individual variables, individual processes, individual conditions, right? None of which are at the patient level or with a patient focus. They’re all intermingled. On the quality measurement side, we look at your diabetes separately from your rheumatoid arthritis, separately from your asthma, separately, from your whatever. We have a very narrow focus. If you don’t meet that very narrow definition, you’re excluded from that measurement piece. So, we’re removing patients because they don’t meet a very narrow definition. In a forward-thinking quality measurement paradigm, you don’t exclude patients; you redirect them to a more appropriate path that’s more relevant. This idea of thinking about the individual and the individual’s needs versus what generally a population might do overall, like the 80/20 rule: if it’s good for 80% of the population, it’s probably best for the rest. You can assume that it won’t kill anybody, but it’s probably it’ll give those other 20%. But the reality is we’re excluding many more patients from our quality algorithms than we include in many tests because they have a co-morbid right. And in the sort of retrospective individual process measurement, a comorbidity confuses that linear algorithm.

So, what do NCQA, quality measurement, and data management have to do with Person-First Safe Living? What bridge links them? I live in each of these worlds, as Health Hats, plus I’m a dot connector. A growing number of people in the research, measurement, and provider communities grapple with the logic, ethics, and opportunities present in patient-centeredness. They experience dissatisfaction with the outcomes and spread of their professional work. Proven science doesn’t spread or spreads very slowly. Organizations work to improve their measure results (study to the test, game the system), rather than improve the delivery of care the measures are meant to influence. Management of big data doesn’t consistently lead to healthier populations. So, some professionals look outside their professional bubbles wanting to enhance and benefit from patient engagement.  Ben is one of those professionals. Some of the people, like me, working on this Person-First Safe Living project come from Ben’s quality measurement and data measurement world. We speak their language. We intrigue them. They need our perspective, our translation skills, and our networks. Do we need them as much as they need us? Let’s see. Let’s continue the conversation with Ben.  

Data management tools to understand people

Health Hats: You and I talked in the group of people looking at safe living in a pandemic where we’re thinking about starting with the patient, the person, rather than thinking about being patient-centric after the fact. We realized that there are characteristics, groupings in COVID that have value. Do you have a preexisting condition? Do you live or work in a dense setting? Are you in a high-risk occupation? Do you live in a geographic hot spot? These are not diagnosis-specific but are natural groupings of people in this crazy circumstance of a pandemic. We don’t have the tools to break down our analysis by things that makes sense for people.

Ben Hamlin: We do. We just don’t use them.

Health Hats: Say more.

Ben Hamlin: I think all of those variables you’ve discussed are all data about a patient and their personal scenario. In that model where I talked about as we divert patients down a more relevant path for the quality of care, those variables are extremely important in defining what that path for you is. All those variables are important. We have great ways now of understanding which ones are most appropriate. Our ability to crunch volumes of data and create these scenarios that match each person’s circumstance best is current technology. There are wonderful predictive algorithms; we call electronic (or digital) phenotyping. (Link to article in the show notes) We create you based on your data, like how we became our data. And there’s wonderful science around that.  It takes a machine to figure out, to use all that data to put you down that right path. But we’re not doing that; your living situation, your ability to access care, your profession, like all those things you just mentioned, are all important variables in that electronic phenotype of you and what you need. We have the technology to develop a quality measure that our quality prospective quality pathway for you, individually. Because we’ve got all the science and we’ve got the technology and the ability of the standards that will allow us to do that. But doing that and deploying that into a national quality measurement program is that there’s still a huge chasm there between those two things because we’re just not, that’s what I’m talking about when I’m saying we’re not leveraging, we’re not using it. No, we’re not using those tools. We have the wonderful tools. They’re cool. For geeks like myself, they’re fascinating. This is why I get up and come to work every day. But it’s frustrating that the old paradigm still is what everyone’s building their value-based programs off of.  They’re saying its patient-centered. There’s no such thing as a patient-centered retrospective quality program. It just doesn’t exist. It’s just not possible.

NCQA collaboration

I asked Ben to tell us more about the direction NCQA is taking to improve healthcare that might be relevant for we activists. You’ll hear CMS soon – Center for Medicare and Medicaid Services and Institute of Medicine. IOM is now NAM, the National Academy of Medicine.

Ben Hamlin: In my role now, I’m trying to shift people towards doing this (improving healthcare) digitally and doing this better. The prior model has been that the accreditors come out with their standards and their measures.

Health Hats: Hold on ‘accreditors.’ What are you accrediting, and what does that mean accreditation?

Ben Hamlin: NCQA accredits healthcare payers, like Blue Cross, Kaiser, membership organizations which provide healthcare, who pay for people’s healthcare. That accreditation is based on a complex set of standards for how they provide services and manage their members. Performance is part of that. These organizations must ensure that their members receive high-quality care. They report almost a hundred performance measures to NCQA every year on their members, which helps us ensure that they are providing high-quality care. Over the last few years, I’ve been trying to evolve into using an organization like NCQA, which has this national program for health care accreditation and healthcare performance measurement.  I think personally and others would agree NCQA is the right vehicle to do so. Measurement information is used by CMS, for example, and used by many payers in their different programs, is used by some States for their programs and Medicaid and other things. It’s a great vehicle to try and make change, but it is like trying to steer the Titanic away from the iceberg with a paddle. The big program has its downsides, too. We have been trying to do a much less top-down approach to how we think about quality with a much more stakeholder consensus-based approach. Suppose we are going to deploy these radical new quality measures. How do we ensure that when we deploy them, they really are going to be those meaningful things that we promised they’re going to make care better at the patient level? They’re more relevant, meaningful to the individual clinicians who are treating these patients? We’ve developed a new collaboration model that involves the payers who are our primary customers and clinicians and patients and the vendors of information, the data aggregators, the States, the policymakers, and you name it. It’s a whole new world. Collaboration is difficult, but if you do it well and you follow the existing models, it can be done, and it can be successful. Before I came to NCQA, I was at the Institute of Medicine. It was two decades ago, but it’s this idea of bringing a group of stakeholders to the team to pure problem solve very specific issues on a grand scale. That is, if you’re trying to do issue by issue with a group of experts, it’s a little easier, but when you’re trying to bring in a really large variety of perspectives such as patients and policymakers together at a table as I’m sure you well know, having been in that space for some time. That’s where it gets a lot more nuanced. So, we’d be trying to become the facilitator of those conversations to help our experience in consensus-based development of quality measures to help people get to this brand new paradigm of how we suppose quality will become. It’s a new role for us. It’s taken a lot of work to help people understand what we’re trying to do because they’re used to us telling them exactly what to do and how to do it. When you start introducing new things, they get upset with us because they’re like, ‘Oh, but you were telling us how to do it before. Why are you telling us to do it differently now?’ It’s taken a lot of massaging, and I’ve learned how to communicate radical new ideas to the bigger world out there. It has been a learning experience for me, as well.

A collaborative space

Health Hats: You introduced me to a collaborative space that you’re hoping to have different stakeholders, including patients and caregivers, chew on together, asynchronously work on different changes you’re talking about. Why should patient-caregiver activists, such as me, be interested in working with NCQA, whose primary customer is health plans and can seem remote to us? What’s the pitch there?

Ben Hamlin: As I mentioned before, the consensus model is to get a bunch of people around the table. In the past, I have found that they tend to be within a certain silo, right? There’s many different silos in the quality space, and the patients and caregivers are certainly one of them. The thing we’re trying to do differently is two things. You’re referring to our digital community, leveraging technology for the quality space. We’re also trying to leverage these wonderful technologies to help the collaboration piece be much more effective and help break down some of those barriers between those different siloed entities. And being more inclusive and offering a safe space or a collaboration space with a lot of the technologies available to those collaborations. We think the first step is to help break down some of those barriers.  Each silo has its own unique knowledge, and unique perspectives and each is equally important in this entire process. They frequently don’t understand each other they may be saying the same thing, but they’re saying it from their version or their perspective. And I don’t want to say we’re acting as an interpreter. Still, we’re trying to find ways to create a common message and ways to communicate better, creating asynchronous, if you want to call it, collaboration space or creating collaboration space. Using things like discussion forums and frequent podcasts like this and another sort of latest and greatest information sharing helps drive those conversations and work and have a facilitator for each workgroup. It’s almost like having your focus group for each idea or issue, but they’re all happening together. By participating in all these different conversations, we’re also trying to identify things that might be of interest to other groups that they might not have otherwise found out about if they weren’t collaborating in a space that’s not really monitored, but is facilitated by a bunch of different people, all from with one unique idea. We’re seeding information back and forth. Our early versions of this were small. We developed learning collaboratives, bringing together different stakeholders on a small scale. We’re trying to up the scale now, and where we’re trying to use technology to help us do that so that it doesn’t become a management nightmare.

Patient voices – mutual benefits

Health Hats: I still get back to the ‘what’s in it for me.’ I think there are so many. I agree that connection is important and connection with people who are chewing on similar things and coming from different perspectives is important. There are many forums to do that with varying, effectiveness and tenure, and reputation., For this, NCQA is new on the block. NCQA is not new, as you said, 30 plus years, but again, why?

Ben Hamlin: We’re not just doing this to be a convener. I know we’re getting a lot of benefit out of this too. Like you said, the payers are our primary customers. But our actual primary customer are those end-users, those patients we don’t have access to because we work with payers or we work with the standards developers. So, for us to have access to their perspectives and give them a voice in this very specific environment of quality measure development we’re hoping to use this digital collaboration hub to be able to identify what’s most important to patients and caregivers. For example, we know we have individual research projects that are working on patient-caregiver issues, social determinants, and all these wonderful things that are happening with NCQA in a different division. But, facilitating a learning collaborative that gives an equal voice, if you will, to payers, to policy people, to the vendors, and to the patients and the clinicians, all as a group.

We want to develop a new quality measure around X; here’s our idea; here’s what the clinical evidence says; here’s our ideas based on our experience. But we need to know whether that even makes sense to you. Is this a validity issue? With your experience as a patient, would this give you enough knowledge? Having access as a researcher to that kind of information is extraordinarily valuable. Focus groups are not used nearly enough in measure development as a way to get the patient perspective. I love doing them. But I rarely get an opportunity. So this is my way of doing an end-run around that to get a digital collaboration community space, where I can have a focus group, and I can ask those questions directly to patients, directly to providers, and use that as we develop this new paradigm. Like I said, when I say equal voice and equal weight to these voices, that’s where I think NCQA has the benefit because we don’t have a vested interest in the payer’s perspective. Like we don’t develop things just for them. We develop things to improve the quality of healthcare. Our mission is to do that, including those other people that I don’t normally have access to.

What’s the pitch?

Health Hats:  You’ve been talking about why it’s valuable to you and NCQA. If there were a vacuum in such forums, that would suck patient-caregiver activists towards that. That would be one thing, but there isn’t a vacuum. There are many forums with varying ranges of effectiveness. It seems that you’re going to have to be way more proactive in terms of being enticing. I’m just thinking about my colleagues and compatriots in this space. If I talk to them about this and encouraging them to participate, what’s the motivation?

Ben Hamlin: Yeah, I should be clear. We’re not trying to replace any of the existing conversations or workgroups. We’re trying to support those any way we can, too. We’ve also had some conversations about can NCQA provide a space in this platform for those groups? For example, if you need more resources, we’re going to try and help you continue those conversations.  Again, knowing what those conversations are even happening is really valuable to us. We can then again understand and invite folks who are having those conversations to either present to other groups in the collaboration space or just do like a podcast like this. We will then post that in our resources section, we then advertise throughout the entire community members to help people be aware of the conversation happening. And so we’re hoping that we’ll be able to ramp up support those other works.  We don’t want to recreate the wheel. We’re not competing for this space. We’re just trying to offer a public utility that will help reduce some of the aggravation of trying to make things happen in this space. I think that’s really what our idea is and our goals are; this is not a competitive model for us. We’re a nonprofit company. We’re not trying to appease our shareholders by getting all the information in one place because I know it’s also not going to happen. It shouldn’t replace the standards development community. We shouldn’t develop the patient care work groups or patient centered clinical decision support workers. I’ve got that already happening. But I think there’s a lot of connections that could be made. And by just again, creating a uniform platform that people can use has resources available for people to use to help facilitate those conversations. But also, to help advertise their work even to other people in the larger community, I think it is a huge value add. So that’s why we’re, that’s what we’re hoping to do.

Health Hats: Okay. That makes sense. I like that. I hooked on what you said was creating a utility. That makes sense. It is not easy to find an effective and friendly infrastructure to host these conversations. Yeah. It varies from fair to not so good.

Ben Hamlin: I agree.

Learning what works

Health Hats:  What should I have asked you that I haven’t?

Ben Hamlin: Again, I think that the idea behind this is that we haven’t found the perfect solution for this either. We’ve looked at other collaboration work, and we’re trying out new technologies and applications that may help facilitate this work. We’ll see what works. We’ll see what doesn’t, and we’re going to work with our different workgroups.  This is a new way of doing business. This is a new way of us trying to support the healthcare community and the quality communities. Things take time to come to fruition and to get value out of it. But I’m hopeful that people optimistically see the value in this kind of activity. I hope people have been really on board with changing the quality measurement environment from a measurement environment to a quality-focused, end-user supportive kind of thing. We talk about CDS or clinical decision support as a quality paradigm. We talk about evidence generation on the fly, in terms of the COVID knowledge accelerator projects and things like that. People must understand, we’re not trying to undermine what you’re already doing. We’re just trying to make things better for you. We’re trying to find efficiencies and make your jobs easier so that we can all get together and improve quality. And healthcare, as a rule, tends to lag in this space. I understand why, but as someone who has close acquaintances and family members who have healthcare issues and serious health issues, it’s important that we just kind of keep this rolling as a together mindset and think about the social aspects of what we’re trying to do. I probably shouldn’t be saying this, but I will anyway, because I can’t help myself. But the majority of the digitalization and the quality environment, whether it’s the CMS CQM program or even digital HEDIS, have been driven by the vendor community. Even in the EHR vendor space, the quality aspects, the people doing that kind of programming, do not have the vision of social responsibility, perhaps that an organization like NCQA does. So, we have this overarching social responsibility to improve the quality of healthcare. Most of the private companies that are doing a lot of data aggregation see value in that data because the data is valuable, but not in the context of creating a public utility of that data because they have to speak to their shareholders. In this changing quality environment, we have to think about the patient at the center again, but what is the best path towards a socially responsible quality program that will help everybody. We’ll help the organizations that are trying to do that, keep the lights on. We have to work; we have to pay our mortgages. So, we had to figure out a model where the organizations doing great work in this space can continue to do. And that’s going to require a lot of federal support. It’s going to require a lot of private support, public payer partnerships to do this. We all must bring the best to the table. We all must support each other, but this is highly complex, and there’s not; there’s a huge amount of money in healthcare, but it’s a lot of it is wasted. I think we can divert some of that to more effective solutions. And I think that’s really what we must try and keep fighting for. So that’s my message.

Health Hats: There you go. Thank you.

Ben Hamlin: Thank you. Sure. It’s been wonderful. Thank you for giving me the platform to speak like this. I love my bully pulpit if you will.

Health Hats: Thank you so much, Ben. Take care of yourself.


Fascinating. I’m intrigued by change from top-down to the grassroots, patient-centered approach that NCQA is exploring. Yes, giant ships change course slowly. Setting up a small department within a large organization does not mean guaranteed sustainable change. But they’re considering and experimenting. As my partner in crime, Laura Marcial, observed:

From Ben, I hear the need to get in front of or ahead of quality by focusing on the right metrics, not just reporting them (including bad or wrong data) more efficiently. I hear people/patients need to be in control of healthcare quality in all of its complexity. I hear that we need to leverage technology to simplify this process while ensuring that this connection between humans and quality is made. The quintessential example here is that outcomes should be a measure, not of life or death, but of reaching some desired goals, preventing comorbidity, or preserving/enhancing the quality of life. To me, this overlaps a lot with both the clinical decision support and trust work we’ve been doing in terms of shifting the balance back to focusing on the patient by making that piece well understood, defined, and integrated. I also think they share some elements on using technology to support this effort, these connections. In information science, we like to talk about the role technology plays in disruption. It is perceived as reducing human-human interaction when it is probably actually increasing it dramatically.

 This minute I sense that they need us more than we need them. Looking at their Digital Measurement Forum, I see nothing patient-facing and nothing person-first. There’s a vacuum. On the other hand, I know and trust Ben.  My personal experience with NCQA has been positive. They are a not-for-profit, mission-driven organization. I want to learn more about digital phenotyping. That aligns with our non-scientific persona approach to finding answers to people’s questions about safe living during COVID-19.  I’m about building coalitions, and we need help with our infrastructure. I approach activism as I approach pain management.  It’s a never-ending experiment. You try stuff. Nothing ventured, nothing gained. If it doesn’t work, try something else. I’m inclined to bring up Ben’s offer of collaboration with my Person-First Safe Living team and see if someone wants to manage the collaboration. Again, collaboration is work. My dance card is pretty full. How’s your dance card? Have the energy to join us. Let us know at info@safeliving.tech.

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Fostering Solidarity on the Front Lines Through Stories https://participatorymedicine.org/epatients/2020/11/fostering-solidarity-on-the-front-lines-through-stories.html https://participatorymedicine.org/epatients/2020/11/fostering-solidarity-on-the-front-lines-through-stories.html#respond Fri, 27 Nov 2020 16:03:20 +0000 https://participatorymedicine.org/epatients/?p=21766

Stories are powerful because they foster human connections, transparency, and innovation, ultimately leading to better experiences for those giving and receiving care. Healthcare workers’ perspectives are critical to creating a shared vision of health care that better prepares us for the future and is more responsive to our collective needs and values. This article authored […]

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Stories are powerful because they foster human connections, transparency, and innovation, ultimately leading to better experiences for those giving and receiving care. Healthcare workers’ perspectives are critical to creating a shared vision of health care that better prepares us for the future and is more responsive to our collective needs and values.

This article authored by the American Institutes for Research Patient-Centered Measurement Team*

We thank you, the doctors, nurses, physician assistants, respiratory therapists, pharmacists, other allied health care professionals, environmental services, support staff, and many other frontline health care workers for the infinite courage and compassion that you are showing—morning, day, and night—in caring for those affected by COVID-19. It is hard to imagine—let alone understand—the emotions and impacts on your daily lives that you and your loved ones are experiencing during this pandemic. You have our utmost gratitude and respect!

We are a team of patients, caregivers, researchers, and advocates for patient- and family-centered care (PFCC). Through our partnership with each other—and with patients and caregivers, measure developers, and health care providers—we have learned a lot about the power of inviting, sharing, and listening to diverse, lived experiences. As our country and countries across the world begin to heal and rebuild from the COVID-19 pandemic, we believe that these lived experiences, or stories, will help us heal, build solidarity, and move forward together. Your perspectives—as well as those of people who have experienced COVID-19 and their families—are critical to create a shared vision of health care that better prepares us for the future and is more responsive to our collective needs and values.

Through our work and lived experiences, we have seen the power of partnerships among health professionals, patients, and families in redesigning care, research, and measurement. Stories bring new meaning to our work and are essential to creating equal partnerships that result in innovative solutions. In return, equal partnerships help create a culture of mutual respect that invites diverse experiences and perspectives without judgment. We have learned that stories are powerful because they

  • foster human connections and build trust by evoking empathy and compassion for others;
  • provide insight into diverse perspectives and experiences, setting the stage for innovation and creativity;
  • promote transparency by helping to understand what matters most to people and why;
  • shift the power dynamic away from “us versus them” by identifying common ground and goals and renewing commitments to what matters most; and
  • ultimately, lead to more meaningful experiences for those giving and receiving care.

Regardless of our backgrounds and experiences, stories connect us as human beings and remind us of why we got into health care, which is to help people live healthier lives that allow them to do the things that enrich their lives. In today’s digital world, it has become easier than ever to share stories. Whether it be a blog post, journal or editorial article, podcast, letter to your representatives, or a social media post – there are a plethora of ways to share your story with a range of diverse audiences. In fact, presently the Society of Participatory Medicine (SPM) and the Health Story Collaborative (HSC) have partnered to share some of these stories through their blog. They are welcoming poems, essays, visual art, music, audio clips, or any other medium you choose to share stories about coping, navigating, and just being during these challenging times.

Regardless of the platform you choose, we stand ready to listen and learn from you—and, more importantly, we are ready to partner with you—when you are ready to share your stories. It may not be easy to share your stories. In fact, it may be uncomfortable for both those sharing and hearing the stories. But know that you are a valued partner and should have an equal voice with patients, caregivers, and others in reimagining the health care system. Until then, thank you and please stay safe!

*About the Authors: In June 2018, the American Institutes for Research (AIR), with support from the Robert Wood Johnson Foundation (RWJF), funded four small-scale pilot projects that demonstrate how to implement the five principles of patient-centered measurement in real-world settings. Members of the AIR team who contributed to this blog include Hala Durrah, MTA, patient- and family-centered care advocate, speaker, and consultant; Karen Frazier, PhD, senior researcher; Stephen Hoy, chief operating officer, PFCCpartners; Mary Lavelle, MS, PMP, senior researcher; Dilani Logan, MSc, research associate; Ellen Schultz, MS, senior researcher; and Lee Thompson, MS, senior researcher.


You might be interested in…

From the American Institutes for Research

From Other Organizations


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Person-First Safe Living in a Pandemic #1 https://participatorymedicine.org/epatients/2020/11/person-first-safe-living-in-a-pandemic-1.html https://participatorymedicine.org/epatients/2020/11/person-first-safe-living-in-a-pandemic-1.html#respond Mon, 16 Nov 2020 14:27:43 +0000 https://participatorymedicine.org/epatients/?p=21763

How can laypeople find up-to-date, trustworthy answers to questions they have about living safely in an emergency, when they have them, in a useful manner? Part 1: a person-first approach for researchers & content creators to help people and their communities find trusted guidance to answer their questions about living safely in a Covid-19 world. […]

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How can laypeople find up-to-date, trustworthy answers to questions they have about living safely in an emergency, when they have them, in a useful manner? Part 1: a person-first approach for researchers & content creators to help people and their communities find trusted guidance to answer their questions about living safely in a Covid-19 world.

What could go wrong?

All of us, from laypeople to professionals – you, me, and our communities – were totally unprepared for this novel virus with global and household impacts. Now, every single day we try to drink from a firehose of new information with the clean information mixed in with the suspect.

Even researchers who deal in information as their profession find it difficult to manage the deluge of information – to keep it clean, clear, current, and relevant.  We all find ourselves overwhelmed, confused, anxious, and mistrustful. AND we all drink from different hoses, some more trustworthy than others. Question: How can those researching, writing, and sharing information about Covid-19 help people and their communities find guidance informed by research that answers their questions on living safely?

Let’s consider one scenario about one household: Carlos, 52, an ICU nurse, buses to work where he cares for COVID-19 patients. His sister manages her chronic arthritis pain as best she can while caring for their mother, 80, who can’t be left alone – she’s suffering from early dementia. His sister takes their mother to the local Senior Center’s respite program. They worry about what would happen if Carlos brings the virus home from work. They worry about the risk of infection to his sister and mother as they travel back and forth to the Senior Center. They wonder When do we need a COVID-19 test? Which test? How often do we need to get tested? Who pays for the tests? What do we do if one of us is positive?

The research industry tends to invest in answering questions arising from acute and emergent medical situations – drugs, therapeutics, procedures, devices, and behaviors. Lay people and communities tend to have questions about function, employment, caregiving, school, transportation, cost, and navigating the healthcare system. So, different priorities and often very different firehoses of information.

Who are we writing this?

We are a small band of volunteers who met through a CDC initiative called Adapting Clinical Guidelines for the Digital Age. We are clinicians, patient-caregiver activists, scientists, and data geeks – and of course, we are also parents, children, partners, neighbors, colleagues, patients, and caregivers. During any crisis and especially an epidemic, people first identify as family and community members. Next, people identify by their skills, occupations, experience, and credentials: clinicians, scientists, employees, bosses, etc. So, that’s who we are chewing on this awesome dilemma. We met to consider the impact of COVID-19 on laypeople and their communities, our communities. We were commiserating: Our families, friends, and neighbors were seeking us out to answer questions they had about living safely during this pandemic. What did we know? How would we advise them? What should they do? They sought us out because we were relative experts, meaning we may have had about a 15-minute advantage on them, but really no more. This small band of volunteers partnered with similar experts who focused on COVID-19 in acute care and medical office settings. Those partners rightfully prioritized saving lives and managing medical care. We knew, however, that most health decisions, in fact, most COVID-19 decisions would be managed entirely outside of medical settings. We gravitated toward that gap.

Our approach to filling the gap. (Finding our audience.)

As otherwise over-committed sailors in wildly under-explored waters, we needed as clear a vision of our destination as we could muster. We knew that our existing appreciation of the concepts around patient-centered care was insufficient, so we needed a more nuanced definition. Next, who, specifically, were our end users? End users are the people who eventually use the tools we begin to develop. Who was our audience? The audience is people who would partner and collaborate with us and may have already developed valuable tools and methods. We don’t want to recreate the wheel. What would be our ask? The ask is the actions we hope this series motivates you to do right now. What would a map look like? What work products should we, could we create?

Patient-centricity, person-centered, person first

Everywhere we go we hear patient-centered this and person-centered that. What does it even mean? In short order buzzwords wear thin (think patient engagement, silos, gig economy). Don’t get us wrong, we wholeheartedly support efforts like the Patient-Centered Outcomes Research Institute (PCORI) and the Patient-Centered Clinical Decision Support-Learning Network. We endorse the IOM (Institute of Medicine) definition for patient-centered: “Providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions.” Immediately, we became overwhelmed by the breadth and complexity of COVID-19 and the diversity of individuals and communities affected. Everyone’s preferences, needs, and values is daunting. To manage, we needed to understand significant characteristics of that diversity in relation to COVID-19 Safe Living. So, for purposes of this work, let’s start with understanding people and hearing their questions and concerns and then move into the IOM definition.

We are person first.

Who are we doing this for? (End users.)

Appreciating the tremendous diversity of laypeople, we determined that everyone was too big a target and that it is presumptuous to think we could have a profound understanding of all communities. Perhaps people who help people in their communities could be our end users – patient and caregiver advocates, leaders in peer communities, lay experts (think 15-minute advantage). Let’s call them community resources.

Partnerships, resources, collaborators. (Our audience.)

Since this small, mighty band of volunteers started out by meeting in the computerized clinical decision support (CDS) space, we wanted to enlist our colleagues to expand their view of CDS and work with us. So, our audience became the CDS and research industry and stakeholders including patients, caregivers, clinicians, and communities. As an example, Datavant and many other organizations assembled the COVID-19 Research Database in an effort to make real-world data available to researchers to better understand and mitigate the pandemic. Anyone can submit ideas for questions they think researchers should investigate. To incorporate the layperson’s perspective, we worked with Datavant to provide a list of research questions that we crowd-sourced from friends, family, and colleagues, including

  1. Who needs a Covid-19 test?
  2. How long after I test positive do I have to be quarantined?
  3. How much will a Covid test cost me?
  4. If a test shows that I have antibodies to Covid-19, am I safe?

What does a home run look like? (The ask.)

Why do this work? Why explore something we know we can’t finish? This mighty band of volunteers has neither the bandwidth nor the resources to sustain this journey. Our goal is to open a door, interest – no, excite – people to come on board, work with us, and carry it on to a sustainable conclusion. We don’t know what the end might look like. So, once again, we want laypeople to be able to find evidence-informed guidance they can trust about challenges in their community, like COVID-19. A home run would be finding someone, some people, dying to grow this discovery process, find funding, build or join coalitions, develop, disseminate, and implement tools and methods – move it along.


In the next section, we introduce the first stop in our journey: identifying personas. In subsequent posts and episodes, we discuss other stops.

Personas. (Person first)

To start with people while respecting diversity, we realized that we needed to create personas, characteristics common across many different groups of people. We landed, unscientifically, on density of living and working, presence of symptoms of COVID and high-risk existing conditions, job risk, and geography as persona characteristics and developed seven different personas including Carlos.

What’s next? (More questions, some answers.)

In summary, to hit a home run, our mighty band of volunteers hopes to find someone, some people, dying to grow this discovery process, find funding, build or join coalitions and move this project along. In subsequent posts we will continue to share our unfunded journey of discovery. We will consider the questions people have about safe living, the gaps in evidence-informed guidance, the challenges of finding what’s needed, when it’s needed, in a useful and trust-worthy manner. Part 2 covers Questions, Gaps, Findability and we move on to Trust and Recommendations in Part 3. In Part 4 we will likely interview current and potential partners working on aspects of this challenge. We seek to promote a dialog within the research community and between researchers and laypeople and their communities. Here we are planting a seed for person-first.

Want to enroll somehow?  Know of a place for us to cross-post our print, video, or audio stories? Communicate with us here info@safeliving.tech, #safelivingpandemic on Twitter, or https://www.safeliving.tech/

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Everyone-Included Research https://participatorymedicine.org/epatients/2020/11/everyone-included-research.html https://participatorymedicine.org/epatients/2020/11/everyone-included-research.html#respond Mon, 09 Nov 2020 13:32:15 +0000 https://participatorymedicine.org/epatients/?p=21759

Person-included research, co-production, tragedy, grief, health equity, and relationships in life and research. Chat with Amy Price of Stanford and BMJ Proem Research follows life. Life comes before research. My diagnosis of Multiple Sclerosis preceded my need for research. Let’s talk about comparative effectiveness research (CER). CER is simply research that tells us that treatment […]

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Person-included research, co-production, tragedy, grief, health equity, and relationships in life and research. Chat with Amy Price of Stanford and BMJ


Research follows life. Life comes before research. My diagnosis of Multiple Sclerosis preceded my need for research. Let’s talk about comparative effectiveness research (CER). CER is simply research that tells us that treatment A is more likely to be helpful than treatment B for a particular group of people in a particular set of circumstances. Before researchers conduct clinical effectiveness research, people have had symptoms, tried to manage those symptoms independently, got diagnosed, and then tried different therapies prescribed by their doctor. Some doctors tried treatment A, some treatment B, and even some treatment C. Researchers, clinicians or patients wanted to know if A was better than B and found funding to do comparative effectiveness research. Even if years of research occur and get published before I get diagnosed, my life happens before research becomes relevant; relevant in the context of my life, my circumstances, my conditions, my genetics. This perspective is the cornerstone of my advocacy for person-centered research.

Introducing Amy Price

I’m delighted to introduce my guest, Amy Price, a senior research scientist at Stanford University in California with the AIM Lab the Anesthesia, Informatics, and Media Lab.; Amy is also a research editor with the British Medical Journal (BMJ) in the UK. The BMJ is a patients-included medical journal. Everything Amy does involves putting laypeople with researchers and finding out how end-users, clinicians, researchers, and systems can work together and benefit each other – an everyone-included model. I first heard Amy’s name when the BMJ recruited me as a patient reviewer. I invited Amy as a guest because I knew that she was on the forward edge of including patients in research. She uses her positions and experience to advocate for patients and caregivers and mentor other researchers worldwide. One of the challenges of including people with lived experience in research is that they come with all their emotions, grief, and life. Amy’s husband died recently of COVID-19 acquired after admission to a hospital and then rehab facility with a severe break in his femur. I’m grateful that Amy feels comfortable sharing that tragedy with us in the context of patient-included research.

Health Hats: Amy. Thanks for joining me today. I think Brian Alper introduced us.

Amy Price: Yes, Dr. Brian Alper is a fabulous, wonderful man who created a point of care system as a medical student because he had trouble recognizing and remembering medical terms. When he found out that other people had the same problem, that blossomed into a whole beautiful point of care system, I used that point of care system because I took an evidence-based healthcare masters at the University of Oxford. I was one of the few people that was not an MD. Dr. Google only goes so far. I found that the point of care system was a wonderful way to get me up to scratch on technology, terminology, and the current treatment options.

Clinical point of care (POC) is when clinicians deliver healthcare products and services to patients at the time of care. The electronic medical record is a point of care system. Dr. Alper created DynaMed, a clinical decision support tool that combines the most current clinical evidence with guidance from leading experts inzcc a user-friendly, personalized experience. With DynaMed, clinicians can find answers to questions at the point-of-care with unprecedented speed. I invited Brian to join me in a mastermind support group. He recommended that I include Amy. Also, you are going to hear the term PI and co-PI. PI is Primary Investigator, the leader, or leaders of a research project.

Patient-caregiver participation in research. Why care?

Health Hats: Tell me about what patient-caregiver participation in research means and why anybody should care?

Amy Price: The biggest challenge in research can be because you design something for someone, but you don’t know that person’s needs. They are the only ones that can tell you those needs. You can’t just measure those needs objectively and think that you got it. For example, I could measure you for a full set of clothes. Those clothes could fit you perfectly. But they might not be the clothes that you want to wear. The texture might not be what matches your skin. You might not like the color. So then, if there are things in those clothes, even though they fit perfectly from a quantitative perspective of measuring, then you won’t use them. If that was a drug and you’re supposed to take this drug intervention three times a day, and the first time you have some feelings about it, some side effects, and you think, ‘let’s halve the dosage.’ Soon, that drug that was supposed to remain in your bloodstream to make a difference, can’t make a difference anymore. You can’t tolerate the drug. This happened frequently with people in mental health. The first mental health drugs did stop people from having hallucinations.

Health Hats: Like Thorazine, Mellaril, and stuff like that?

Amy Price: Yes, especially first-generation drugs. People thought they were a great success because it meant that they could reduce the number of institutionalized people for the first time in history. But people that were having those problems with mental illness felt that they had more freedom in the institution because those drugs caused them to slur their speech, gain massive amounts of weight, unable to maintain an intimate relationship, had dry mouth and eyes. They said, ‘yeah, I’d rather be crazy because that didn’t bother me. That bothered other people. I don’t want to hurt anyone, but at the same time, I can’t live my whole life like this.’ They could have studied that at the beginning, and they could have developed drugs that solved those problems, which they have now for the most part. But in those days, those drugs shortened the life of people for many years. So, that was a fail. We see many times where interventions, pharmaceutical drugs, and medical devices, the problems are seen very early in people. Still, because the study has an agenda, the study goes on, and those particular things aren’t recorded. That’s how we get more recalls. That’s how we get challenges and implementation problems because if the intervention doesn’t match the person’s lifestyle or what they feel comfortable using, it will be cast aside. Then it’s the same as not using it at all.

The right person for the right job

Health Hats: Okay. So that explains why people should care about it, but that affects them on the outcome end? How about people becoming involved in research? The challenge of recruiting participants – sometimes called subjects – is one thing. But if you’re talking about recruiting people to participate, to inform about life in general, where the fit isn’t the necessarily the thing, but the color and the texture and all that. Who is it that gets involved in that kind of participation?

Amy Price: In the studies that I do and that we see at the BMJ more and more, all kinds of people get involved in research for different reasons. The thing is to provide opportunities where people want to get involved. If I say to you, ‘I have a job scrubbing toilets, it’s a wonderful research position.’ Would you like that job? You think. ‘no, not today. Get me out of here.’ So, it’s up to me as a researcher to share tasks that you would find pleasing just as it is with any part of a business or our family or the life you’re building. You’re building a useful relationship, a relationship where there’s give and take between what you can do, what you can’t do. So if I’m a patient and I’m helping with a research project, I may want to know something about statistics to be more informed about the study, but I do not have to be the team statistician. I think that we err because people either think that they’re just there to share their experience or believe that they’re the sun, moon, and stars for the team.

Neither is true. In a good team, every piece does its work. The challenge is if you look at a car, for instance, a car has parts that do different things. If I try to make my engine be a tire, that’s not going to work. It’s the wrong shape. So, we have to sort out what shape we take in our research studies and what shape we take when involving people, researchers, and lay researchers, our patients. They are a part of the team, and they’re a part of that relationship. It’s not one size fits all. You don’t just pick up a patient and put them in research and say, ‘I’ve got a patient that’s good enough.’ No, it’s a specific patient that fits those research needs. At one point, you might want someone very new in their experience because that’s what you need to answer your research question, and that’s who you think could be more helpful. And then another time you may want very experienced people. It’s the same in any other kind of relationship, the give and take.

Health Hats: I like that because I’m thinking about a conversation I had with somebody from the University of Michigan Performance Improvement Department. Their philosophy was, ‘anybody who wants to be involved, the answer is yes.’ The challenge was developing these multi-tiered systems where the bulk of people were survey responders – we do a survey, and they’d respond. But then some people were more testers, trying out different solutions, different potential solutions. Then there were people good at communicating and sharing stuff on social media. Then some people were good leaders, and they could be a Co-PI. I loved that they were going, ‘how do we get to yes for everybody?’ and then design it so that we have many different tiers. But the challenge was building and funding infrastructure. You don’t just do that by waving your magic wand. It takes work, and it takes an intake system, a support system, technology to do that assessment and offer those varying opportunities.

Co-production. Sweet.

Amy Price: Okay, that’s true. Consider this: you don’t have to build all at once. I suggest when people start with co-production public and patient involvement,

Health Hats: What does co-production mean?

Amy Price: Co-production means that you work right alongside the researcher. It’s a form of public and patient involvement. I prefer having people working with me through the study. Some people follow the model you were speaking about – not doing what they’re good at. Often, I give patients one task to do. I know if they’re faithful to the task just the same as I would with anyone I had on board, employing them or as a part of the research team. And then, as trust builds, I would give them more, but I would make room for that in the study. So, it’s okay to start small. I think it’s preferable because you can see what you’ve got and grow together when you start small. It’s like a family. If you have one child or two children in a family, you can meet those children’s needs. You can see them as individuals; they can grow with you. But if suddenly you are blessed with quintuplets, then that’s a different problem; it’s a whole different world. If I was blessed with quintuplets in my family, then I would say, ‘okay, this is what we’ve got in front of me. This is what I’m going to work. I’m going to love those kids, and I’m going to give them the best childhood that I can, imperfect as I am. I’ll try to be their mom,’ and their dad would come along for the same journey. But I wouldn’t wake up one morning and say, ‘The next birth I have is going to be quintuplets. Let’s celebrate that.’ No, I would prefer one at a time. Sometimes we make those adjustments, but it’s okay to start small, and it’s okay to start with what you need. If it’s your research project, you know what the needs are, so to seek out people who might have those particular qualities rather than change your research project to meet the needs of whoever volunteers.

Community-based research

Health Hats: Is your research mostly clinical research, meaning, either medical hospital, medical, clinic or is it also community-based research?

Amy Price: That’s a great question. I do everything, clinical and community. I do everything and find that they work well together because one of the barriers to research is that sometimes clinical and social care or communities don’t talk. That’s a great gap. You can always find when you’re moving through those areas, anytime that you can join them together, it’s a plus for everyone.

Health Hats: Now, in this pandemic, you can see where that gap is biting us in the ass. When I looked at a lot of these collaborations that are going on, these fast track research projects, they’re very heavy in the save-the-life arena, as it should be. On the other hand, so much of managing this pandemic for lay people happens at home or in the community. There’s not that much happening in the community right now. I think it’s partially because we’re not good at it. You can ramp up familiar stuff, but it’s hard to ramp up stuff that you’re not familiar with.

Amy Price: I’d have to agree with that. With the pandemic, you have the fear aspect, and people don’t like to make new friends when they’re fearful.

Health Hats: That’s for sure.

Learning from tragedy

Amy Price: My husband died of COVID. A healthcare worker infected him. The most difficult thing was not seeing him. He went into the hospital with a broken femur. And we watched him die over FaceTime, and that was horrendous and unnecessary. There were many ways that it could have been arranged for visits to take place. We had to make end-of-life choices on behalf of another person that you see through a phone screen. It’s an unbelievable experience. I see that repeated worldwide, yet I don’t see people getting together and saying, ‘how can we as patients, as clinicians, as systems do this better?

How can we make this work?’ Everyone laying their cards on the table We’re the system; we’re afraid that we’ll get sued. It will cost us more money. The clinicians, if we increase risks and we don’t have PPE. But I, in my case, the World Health Organization gave me the PPE. I had people to don and doff. I had the training. I had people interceding for me when they would not let me in the hospital. I considered breaking in because it’s my husband. It was not right. But at that particular time, the ward was so closed that it was face recognition badges that were changed by the day. Sometimes even the smaller things, like when you pick up someone’s belongings, they had us wait. It happened twice because it was a rehab facility and then a hospital. Both times we had to wait three and a half to four hours in the Florida sun for someone to give us the belongings. We were isolated from other people who were also waiting for the same thing. The belongings are given to you as biological waste. The very last thing that you have of your loved one is a garbage bag full of stuff. I think we can do better. I think it could be better packaged. I think people could have some counseling before they go. There could be some mentorship; some making people welcome even at a distance. You could even have mini ceremonies going on for people, and you could know it’s going to take four hours to get this together. Thank you for checking in. If you check back just like you do at Walgreens or Walmart to get a prescription. If you check back, we will be ready for you in 3.2 hours. Is there something else you can do for that time or even send them a letter ahead saying, this is a process. This is how long it will take. And the kindness in returning those goods to the patients is critical.

Health Hats: I have been an ICU nurse and an ER nurse, and a quality improvement professional. What goes through my mind is that the gap between what people need as their loved one is going through this and the gap between what people need or the questions they have and what we’re working on. Where our attention is, where the professional’s attention is, there’s such a gap.

Amy Price: That’s the problem.

Health Hats: It seems like with COVID, all the challenges that we have, whether it’s clinically, relationships, research, it’s just all the same challenges on steroids. They’re magnified; they’re exploding. It’s like a magnifying glass to look at the wart or the elephant or whatever. Yes, it’s a challenge. Now I’m on calls with patient family advisors’ networks. People get together and talk about what they’re dealing within a particular organization where they sit on the patient family council. Much of the conversation is about family presence for people with sick people, and the range is from crying rage to sobbing frustration. Almost nobody is talking about we tried this, and this worked, this didn’t work, it’s like they’re not even to the point of trying stuff.

Amy Price: Yes, exactly. When we try it, there’s such an overwhelming sense of grief we don’t share. For example, in this particular place where my husband passed, in that hospital, there was one iPad for the whole floor for the entire ICU.

Health Hats: Oh, my God.

Amy Price: One iPad. One wonderful, amazing nurse ICU nurse – yay, nurses – decided why don’t we just put his phone on his IV pole, then all we have to do is turn it on. And they left it on the IV poles. We would call the desk and say, ‘please turn on the phone.’ Then we had the opportunity to speak with my husband or sing to him or pray or read him something when he couldn’t speak anymore or just watch him, just to be there, to be a human presence there, because we couldn’t actually be there and it was like more precious than anything. Then another time they said because of different strokes, he might feel fearful, or he might not be able to recognize the people with him. So, I asked, could they pretend they were me, just catch him nicely. They were so kind, and they did that. I remember one of the neurologists shared with me how she hoped he could get well and the barriers in the way of getting well. Then she just cried. It was real. I instantly loved her. I instantly connected because it was human. That was in contrast to another provider selling hospice like it was a used car. My feeling at the time was my husband knows the people in the ICU, even if he’s not fully conscious. He knows the people touching him and caring for him. He needs to be in an atmosphere where he feels familiar. But then, of course, the ICU is quite full, and we have to make room. I became very selfish. I said, ‘the only person I have to make room for and care for is my husband. We’ve been together for 49 years. And that’s where my focus is. He will not be moved.’

Health Hats: How do you think this recent experience you’ve had with your husband and COVID changed how you think? If you take three steps away from yourself and look and see how it’s affected your work now, as a researcher. Do you feel like your glasses are tinted differently or they’re a different prescription? How do you think the work you’re already doing your work will be different? You’re already a very patient-caregiver focus in your work. But this can’t not affect you massively.

Amy Price: Oh, that’s a different question to answer. I think that grief has several stages that people go through. I don’t believe until you go through the other end that you realize its impact on your daily life. I probably have less tolerance for unkindness and hierarchy. The compassion for patients and people on the other end of treatment and the clinicians who treat them are often horrendously overworked and underappreciated. I don’t know that that has changed. Unfortunately, I have a disrespect for or a growing disrespect for systems and politics and how people’s agendas shape evidence and not by actual research evidence. And I have a greater passion that we as human beings, no matter whether we’re researchers, whether we’re clinicians, whoever we are if we have to make decisions on things, have the right to have evidence knowledge available to us. And it doesn’t matter how people feel about explaining that to us. It’s not their prerogative to have feelings about that. I think that the right to information should be a human right because it allows us to make informed shared decision and a decision can’t be shared unless it’s informed. It’s only manipulation if it’s not a shared decision, or the decision is to not decide at all. In terms of decision-making, it’s important to respect the individual as to how much of the decision they feel comfortable in making, rather than have some preconceived idea of how much of a decision they should or shouldn’t make, how much information do they want and to do everything in our power to provide that. I’ve had some misgivings in research and not done well about working day and night and boundaries. I’m not that good at, but I have to get better. Those are the major changes that I can see right now, but I think it can also be like a growing child. We have our children. We don’t see how much they’ve grown until their pants are getting too short or they’re growing out of things. Often other people can see changes in us, but we don’t necessarily see those changes.

Build trust, find cracks, walk through the door

Health Hats: That’s fair. So, I’m going to turn it around a little bit before we wrap it up. I’m now on the Board of Governors for PCORI (the Patient-Centered Outcomes Institute), and it’s an awesome responsibility and opportunity. So, as a researcher, a patient, a layperson, considering research, where should I focus my attention with PCORI to affect strategy for this patient-centered comparative effectiveness research?

Amy Price: That’s a very interesting and important question. And I don’t know if you’ll like the answer to this, but I find that it’s who you are that makes those differences in strategy and in changing policy. And when an open door comes up, you’ll see that there’s a gap, and sometimes you can walk through that door and make a difference, and that’s the time to do it. And then there are other times where you could speak up, but no one’s hearing. So, at that point, you’re creating a presence; you’re building trust. That’s okay as well. So, in anything like that, watch for your moments because there are certain places where you will be able, where you’re destined to make a difference where no one else on that PCORI Board can. You have unique capacities, and you were chosen, to do this. If you asked me, as a researcher and someone who’s involved in co-production, what would I like to see, I can give you my shopping list.

Health Hats: Hold that thought, because I want to hear at least a couple of things on your shopping list. But I want to tell you that I do what you’re saying. Like you, I’m a seasoned person and I’ve been a change agent all my life, and I think what you’re saying about trust and opportunity and stepping through the door when there’s a crack to step through, rather than trying to identify this is what I need to accomplish, blaze forward with that. I think that’s very smart. Okay, give me two or three things that are on your shopping list.

A shopping list

Amy Price: On my shopping list: First, co-production and patient involvement. Fund it with enough money to make a difference. Fund it with enough money to train researchers, and clinicians together on the project that they’re working on, fund it so that there’s a future for lay researchers on that project to move forward into another project, maybe with the same team. Instead of just a research project, you are building lives; you’re building a future, you’re building a system and widening the scope. There’s very little in PCORI that is user-generated in terms of the original ideas. So in the original ideas, why couldn’t just as a test, some of those ideas, the big ideas, the ones that are going to be funded big because you can apply for a $10,000 seed grant, and it’s wonderful. It’s wonderful that they’re available. It’s wonderful that PCORI does things like that because it does give people a start. So, I’m not making that small in any way. Congratulations, let’s do more of that. But then why not take a big chance on a big grant where somewhere a difference could be made and completely something that was comparative effectiveness that a group of end-users decided. Then maybe they brought in the researcher and the researchers as consultants. And the clinicians are the consultant. I think it would be amazing to see to see something like that. I don’t know if PCORI is ready for that. But I believe that one day they will be because there’s good people like you also now, there are good people at PCORI. People fail to see that they compare it with other systems, like the NIHR and the Australian systems that have been in place for so many years with some kind of level of public and patient involvement. In the US, we had nothing. PCORI came and they have done landmark things, and they have outdistanced with less money many of those other kinds of seasoned organizations. So, I really respect and admire the work of PCORI.

(The NIHR is the National Institute for Health Research, UK’s largest funder of health and care research and provides the people, facilities, and technology that enable research to thrive)

Health Hats: Those are good ones, really good ones. Thank you. Do you have a third one?

Amy Price: Oh my gosh. I get three wishes? Yes. I would love to see organizations that would step forward – because one of the things about grant funding agencies is that they’re very responsible for the funding they give out. They must get outcomes back because otherwise, it’s not coming to them again. So, they can’t just say ‘here patients’ to people who have no experience and don’t know what a statistician is. ‘Here, just take this huge project and run with it,’ right? Because they’re responsible. The funding agency is responsible to the taxpayers and to other funders. They’re responsible for the outcomes, so they have to have outcomes. Let’s not forget that. But what if certain organizations stepped up and said like I know for sure that at the AIM level at Stanford, we would do this, where you would step up and say, ‘I will take a major project. I will be a mentor for a co-investigator as a patient on the major projects, and we will be with them all the way; we will work together.’ That would be my third wish. I would love to see that.

Equity in research, in life, respectful relationships

Health Hats: When I thought about going for the PCORI Board and was accepted, it was like, okay, so what is it that I’m here to accomplish? If I had to say one thing, it’s about health equity. And I think the things that you’ve talked about are key to that, key to that happening. So, I appreciate this.

Amy Price: Yeah, I hear so much conversation with buzzwords. Buzzwords like level the playing field, health equity, make everyone on the same hierarchy for a season. To me, if you’re using hierarchy and power in the same sentence, that’s a fail. It’s more like a relationship. When I look back to my long marriage, that relationship’s success wasn’t that we strove to make each other equal. The success of that the relationship was the relationship that we built and the relationship itself created the respect, the respect and the equality and the partnership and the trust and all those things are the things that are necessary for people to work outside of hierarchy. Because then the rules, so to speak, aren’t broken because they’re inborn, and you would not break those rules because you don’t want to hurt the relationship, but if they’re hierarchy driven, that’s a rule. How solid is that rule? How far can I push against that rule? And all the time that we’re doing this, trying to find out what rules are real and what rules we can break and ask for forgiveness for later. That’s is wasting time, and it’s time that’s taken away from building together in relationship. Does that make sense? To me, real equality is in respecting each other and even more than even the kind of respect that covers one another’s backs. So, I have good days, and I have bad days. In my good days, maybe I’m a star. On my bad days, so not much. I probably don’t deserve a relationship in terms of having that because I deserved it. So, my part is to try to minimize those days. But when I can, as a friend, as a partner, as someone that’s working with me, will you cover me? Will you love me for who I am? Not in, not somebody you want me to be. Because if you love people as they are or work with them as they are a partner with them, as they are, whatever words that you want to use, then as you do that, their strengths will come out, and they will become everything that you wanted them to be. That will unleash power and possibilities and capabilities and loyalties in them that they never even knew they had themselves. And you didn’t know. And sometimes we can see the potential in other people they can’t see in themselves. And as a friend, I can build that potential and help you see; you can do this. A really important part of health equity is respect, the relationship, and the permission to be different. I don’t have to be like you; I don’t have to think like you. I only have to respect you. I have to care for you. I have to listen to you. And if I listen to you and listen to hear not just to respond, but really, but listen to you, then that will change me that’s going to change me. Cause I’m going to see things in me that need to change based on what you said. And if you’ve truly listened to me, the same things, the same thing’s going to happen for you. And that builds a force, and it builds a team, that I think nothing can break. But it’s not easy. It’s hard work. It’s hard work to co-produce things. It’s hard, it’s easy to do it’s off, but then you’ve got another person they think differently and, and then you want to be kind, and you want to be co-producing, and then you realize that actually, you’re not co-producing at all. You’re just expecting everyone to do it your way. And you’re looking for people that will collaborate or cooperate on your system. And you don’t even know how they think about that idea. And I can’t tell you the number of times when I found myself like that. And I thought, I’ve got what I want, but do they have what they need or what they want? and so that’s all for me, that’s part of the, that’s part of the journey. That’s part of the co-production journey as part of a partnership’s journey, and we gain more. So, you can see things that I’d like to do things where I might be really weak. You could sit there and say, yeah, that Amy, like she’s a real loser. I can’t believe what I had to say. You have to explain that to her. She’s so thick. Or you could explain it. You could just explain it to me. And you do the strong part. One of the beautiful things in the area of grief, one of the beautiful things that came from that is sometimes in the early stages of grief, you’re not really doing your job. And the workload for everyone else doesn’t lessen. And yet I found that people just quietly picked up tasks or made another way to do things in some areas. Like to create space and freedom, and that’s also a part of partnerships to get anyone to work with me. almost anyone, most people, a lot of people when I’m at the top, got lots of things going for me. Everyone will come for the ride, but when the ride gets bumpy, who’s left? The people that I want to work with, the people that I want to partner with for a lifetime, are the people that will stay for the ride, whether it’s bumpy or smooth. I’m also fully prepared to stay for the ride with them, whether it’s bumpy or smooth. It’s a two-way street. In marriage, people talk about living 50/50. Everybody has to be 50/50. My husband and I decided that’s wrong because each person has to give a hundred percent. And when you both get a hundred, you get an amazing synergy. But as soon as you start measuring how much I’ve been on it now, you’ve defeated. You’ve defeated the purpose. You’ve fallen into the hierarchy path.

Health Hats: Wow, this has been a lot. Thank you. This is great. Thank you very much.

Amy Price: Oh, thank you so much. It’s been such an honor. This has been like talking to a friend.

Health Hats: Yeah. Good. Good. Guess what? We’re on our way. We will talk again. That’s one of the nice things about doing this is. I’m a nurse, and one of the things that I’ve always loved about nursing is that I’ve had the opportunity to have brief intimate moments with people. It’s such an honor and so gratifying and enriching. I’ve missed that once I got into administration and consulting and got away from the direct care. Oddly enough, I find that this interviewing can be like that.

Amy Price: I actually found this interview healing.

Health Hats: Oh, great.

Amy Price: I find it healing and calming in a way. It made me reawaken something on the inside, which is beautiful. I’m so grateful for what you’re doing in this space. You do make a difference for people. Every place that your feet have landed, the nursing, the administration, the policy, the strategy, you’ve just done whatever you need to do, make a difference.

Health Hats: I try. I try.

Amy Price: Yes. And I think that many times do you know that there are people in my life that changed my life with a word, and I didn’t realize it until years later. That word never left me or that impression or something that I saw. I think that it’s the same. I believe that you’re changing destinies with those direct personal moments. Thank you. Thank you.


Wow, a rich and enervating conversation. Person-included research, co-production, tragedy, grief, health equity, relationships in life and research. After I completed this interview, I thought research and tragedy – what’s the through line, the story here? For me, like Amy, I have a 45-year marriage that’s the epitome, the model for co-production with respect, partnership, growth, and wonder. It’s a high bar for everyone-included research. I also think that passion, enthusiasm, and activism in relationships, research, and advocacy have the inevitable consequence of disappointment, grief, and exhaustion. One doesn’t come without the other. Mutual respect and support go along way to keep the fires burning.

Thanks for this chat, Amy. And thanks to all of you pushing and pulling for everyone-included research. We have so much work to do. Onward!

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Checking the Compass of Participatory Medicine https://participatorymedicine.org/epatients/2020/07/checking-the-compass-of-participatory-medicine.html https://participatorymedicine.org/epatients/2020/07/checking-the-compass-of-participatory-medicine.html#comments Fri, 10 Jul 2020 16:12:01 +0000 https://participatorymedicine.org/epatients/?p=21742

To paraphrase Abraham Lincoln, “A compass will point you to true north, but it doesn’t show you the swamps. If you get bogged down, what’s the use of knowing the direction?” When on a journey, it’s a good policy to periodically take inventory of the landscape in order to avoid obstacles and pitfalls that might impede progress. […]

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To paraphrase Abraham Lincoln, “A compass will point you to true north, but it doesn’t show you the swamps. If you get bogged down, what’s the use of knowing the direction?” When on a journey, it’s a good policy to periodically take inventory of the landscape in order to avoid obstacles and pitfalls that might impede progress.

The Society for Participatory Medicine is in the midst of just such an exercise — acknowledging the progress that has been made to date, while double-checking our direction and keeping an eye out for stumbling blocks as we work toward a collective vision for the future. Our guide in this process is Lisa Thompson of Sturbridge Growth Partners, a consulting firm that specializes in assisting non-profit associations.

The SPM community is encouraged to join us for our next SPM Town Hall, scheduled for Wednesday, July 15th from 7:00 PM – 8:00 PM (EST). We’ll get to meet Lisa and hear a little about the collaborative work she is doing with the Society. The majority of our time will be dedicated to conversation with you, our members. We want to hear your opinions on where we’ve been as well as your aspirations for where we should be headed! Login information for the Zoom call can be found on the SPM Calendar.

For questions regarding SPM Town Hall meetings, please contact Brian Mack, Board Member-at-Large via SPM Connect.

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The Health Story Collaborative & the Power of Healing Narratives https://participatorymedicine.org/epatients/2020/06/the-health-story-collaborative-the-power-of-healing-narratives.html https://participatorymedicine.org/epatients/2020/06/the-health-story-collaborative-the-power-of-healing-narratives.html#comments Wed, 10 Jun 2020 10:38:49 +0000 https://participatorymedicine.org/epatients/?p=21721

Join a live virtual Healing Story Session on June 22! “Pain, suffering, and ambivalence can co-exist with peace, joy, and self-love. Healing can take many forms. Sharing our stories helps others to find their way, and reminds us all  that we are not alone.”  — Annie Brewster, MD, Health Story Collaborative   We are honored […]

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Join a live virtual Healing Story Session on June 22!

“Pain, suffering, and ambivalence can co-exist with peace, joy, and self-love. Healing can take many forms. Sharing our stories helps others to find their way, and reminds us all  that we are not alone.” 
— Annie Brewster, MD, Health Story Collaborative


We are honored to invite you to What Patients Can Teach Us About Living with Uncertainty: A Healing Story Session, a free online educational event co-hosted by Health Story CollaborativeInspire, and the Society for Participatory Medicine


The Healing Story Session will feature Elizabeth Jameson, an artist, writer and patient activist, and Keisha Greaves, a fashion designer, blogger, keynote speaker and patient activist. These two nationally known women, who live with chronic disease, have a lot to teach us about living with the unknown, something we can ALL benefit from now in these times.

As Dr. Brewster, herself a multiple sclerosis patient, noted, “Healing narratives are relevant to all of us. These stories transcend illness as  a celebration of hope, human resiliency and dignity.”

Please register today, as space is limited–it takes just a minute. 

All the Best and Stay Safe,
You Friends at the Society for Participatory Medicine

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Haiku as a path to resilience in the COVID-19 era: #HaikuChallenge20 https://participatorymedicine.org/epatients/2020/06/haiku-as-a-path-to-resilience-in-the-covid-19-era-haikuchallenge20.html https://participatorymedicine.org/epatients/2020/06/haiku-as-a-path-to-resilience-in-the-covid-19-era-haikuchallenge20.html#respond Sat, 06 Jun 2020 16:17:04 +0000 https://participatorymedicine.org/epatients/?p=21708

Raising our resilience in times of great stress - through haiku - can boost our ability to navigate pain & suffering. From a nurse who's experienced great loss

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Guest post by SPM member Pam Ressler RN, MS of Stress Resources LLC. See bio at end.

I have just finished co-teaching a month-long elective on the topic of pain to a group of rising 4th year medical students. In collaboratively planning the curriculum with my colleagues, we included the necessary “test-worthy” facts about pain management, but given the current climate of fear and uncertainty of the global pandemic, we also left space for exploring the broader experience of fear, pain and suffering.

All humans will experience pain in their lives, some of us more than others, but pain is a universal experience of being mortal. Navigating these uncertain days of COVID-19, pain and suffering are more prevalent than ever. Our exposure to pain, suffering, and fear is enormous — whether we are a healthcare provider, a person living with chronic health conditions, or a family member.

Even more challenging is the uncertain nature of the COVID-19 pandemic, its unpredictability with an unknown endpoint. We are receiving mixed messages from the media and public health officials;  being asked to isolate ourselves from others while at the same time being told that loneliness and isolation pose significant health risks, especially to individuals with chronic illness. For those in of us working in healthcare, fear of contracting COVID-19 is heightened by lack of adequate personal protective equipment, unrelenting work schedules, and compassion fatigue.

This has left us with the question: How do we care for others in pain when we are also hurting and suffering? While I don’t have great answers to that question, I can speak from my own experience.

As a nurse I was taught to be observant to signs of pain and distress in patients, to be vigilant in providing appropriate pain relief. I was not taught to be vigilant or observant to my own fear, pain and suffering. COVID-19 has presented an opportunity to recognize the intense toll this pandemic is taking on each of us. Our ability to be resilient, to be able to bend and adapt to adversity, is being tested in ways many of us have never experienced.

Raising our resilience in times of great stress can boost our ability to navigate pain and suffering with less reactivity and greater wellbeing. Finding tangible ways to shift or pause during our stressful days, to notice a bit of beauty, a pleasurable experience, or even simply our ability to take a breath, is powerful and healing. Allowing pain and suffering to coexist with pleasure or joy may seem ridiculous to many — a baseless impossibility.  However, often those with chronic illness or those who have experienced loss and grief eventually come to this place of equanimity.

I was brought to this place with the death of my teenage son from cancer nearly two decades ago. Allowing myself to notice beauty while being surrounded by fear, anger, grief, pain and suffering seemed implausible.  But I also desperately wanted to escape from the vortex of despair. So I pulled out a forgotten notebook in a desk drawer and started to write a few words. I began slowly, going outside, trying to notice at least one thing each day that was beautiful, interesting, pleasant, surprising or ironic, then simply writing a few words of what I observed. This became my touchstone of equanimity.

Over the years I began to craft those few words of observation into haiku.

Why haiku? Because haiku invite observation and elicit thoughts and emotions that are grounded in the present. Haiku are micro poems that can be said in one breath yet profoundly express many aspects of the human experience. Haiku are healing for me, structured simply into three lines of 5 syllables, 7 syllables, 5 syllables a framework that is consistent when I am faced with so many other inconsistencies in my life. Haiku are meant to be shared — allowing the reader to understand them and feel them in their own way. There is never a wrong way to understand a haiku. Haiku writing helps me to connect with what is going right in the world when so much is also going wrong.

Since COVID-19, I have stepped up my haiku writing. I write and share a daily haiku on my blog and on Twitter using the hashtag #HaikuChallenge20. Since mid-March when I began posting my daily “pandemic poetry” folks from around the globe have shared their own micro-poems. In our isolation we are connecting around what we are observing.

If my medical students had asked me for advice in how to keep working in healthcare when one is continually witnessing so much pain and suffering, I would humbly offer this advice:

  • Acknowledge your own pain and suffering as you care for others — this is not a sign of weakness but a recognition of compassion and empathy.
  • Find ways to pause and check in with yourself throughout your day
  • Learn to meditate, pick up a musical instrument, write a haiku
  • Remain curious
  • Seek out beauty, joy, or gratitude each day — and tell about it
  • Keep your heart soft and your eyes open — its OK to be vulnerable

As we continue to navigate through these unsettled times, may we find a sense of resilience within the chaos, the ability to find equanimity in uncertainty, and the desire to write a haiku.

Pamela Katz Ressler, RN, MS, HNB-BC is the founder of Stress Resources in Concord, MA and an adjunct clinical assistant professor of Community Medicine and Public Health at Tufts University School of Medicine in Boston, MA.  She has served as the only nurse on the Executive Board for MedicineX at Stanford University and is an appointed member of the Consumer Health Council of the Massachusetts Health Quality Partners. Pam’s consulting work focuses on sustainable strategies of resilience for organizations and individuals. She was selected as a 2019 Mayday Fellow for Pain and Society and is currently serving on the Global Alliance of Pain Patient Advocates Presidential Task Force of the IASP (International Association for the Study of Pain). Pam is a member of the Society for Participatory Medicine. You can find her podcast Raising Resilience on Apple Podcasts and on her website StressResources.com

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Courage and resilience help face the uncertainty of coronavirus https://participatorymedicine.org/epatients/2020/05/courage-and-resilience-help-face-the-uncertainty-of-coronavirus.html https://participatorymedicine.org/epatients/2020/05/courage-and-resilience-help-face-the-uncertainty-of-coronavirus.html#respond Fri, 29 May 2020 16:27:29 +0000 https://participatorymedicine.org/epatients/?p=21698

Guest post by empowered patient Howard Chang. See bio at end. I’m a highly engaged patient advocate who has faced many challenges. To my unhappy surprise, the coronavirus pandemic and lockdown has revealed once again how much I still struggle with the need to be in control. Like everyone, I don’t like our situation, but […]

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Guest post by empowered patient Howard Chang. See bio at end.

I’m a highly engaged patient advocate who has faced many challenges. To my unhappy surprise, the coronavirus pandemic and lockdown has revealed once again how much I still struggle with the need to be in control. Like everyone, I don’t like our situation, but because of my life experience I am prepared to be tough. I’ve learned two traits that are essential to e-patients facing challenges at the frontier of knowledge: courage and resilience.

As a child, and now an adult, I’ve always struggled for control. And so, as long as I can remember I’ve wanted to control my environment and future. I attribute this trait to a chaotic upbringing. Outside of my home I experienced bullying for being Chinese American and having the severe, chronic skin diseases psoriasis and eczema. Inside the home I felt unsafe for reasons I won’t go into detail here.

The chaos from my immediate environment seeped into my heart in a way that led me to feel insecure and anxious. The coronavirus pandemic and lockdown has revealed once again how much I still struggle with the need to be in control…

Longing for order in chaos 

A confirmed psoriasis diagnosis at age eight changed my life forever. I missed school three days each week to go to the clinic for phototherapy treatments. Nobody explained why I needed to wear special goggles in the light booth, or how the smelly tar ointment I slept in overnight helped my skin.

I wish someone had warned me how much the unpredictability of chronic disease would burden me for decades to come. Or how it would become symbolic of a lifelong struggle to find order in the mess of life.

As I entered my teenage years, I began to make more decisions for myself. I naturally sought to limit uncertain outcomes and surprises. Of course, I couldn’t control everything, so I focused on a few areas.  I became a straight-A student, preparing tirelessly so I could do the best on the exam. I avoided awkward social situations.

In college I took classes designed to my academic strengths. I sidestepped courses that required oral presentations or long papers, opting for problem sets. That way I could minimize the ambiguity of subjective grading.

Even though at times my psoriasis spread out of control all over my body, I diligently did what my doctor prescribed. At least that much I could control.

Addressing the lack of control 

In 2011 I finally asked a therapist why I felt so angry and anxious about what I could not control. He helped me see the ineffective ways I coped with the insecurity and fears. Some negative habits I could attribute to poor coping skills such as becoming upset with others who did not do what I wanted. But my strong drive to control outcomes and avoid risky situations appeared to directly correlate with my internal struggles.

A great example of my need for control came up in a therapy session. I planned to join my mentor on a trip to the UK to explore starting a project there. I had so many questions. Would my skin hold up on an international trip? Would I adapt to a new culture? Would I meet my mentor’s expectations?

I wanted to know how to best approach the anxiety inducing situation. My therapist told me I needed courage and resilience.

Discovering courage and resilience

As I look back on an incredible and productive trip to England a decade ago, I’m struck by my therapist’s insight. Since I couldn’t control my environment, I needed to change how I faced that uncertain and fearful situation. He challenged me to summon inner strength to calm my fears so I would not falter at the first sign of trouble.

Since then I’ve thought a lot about what it means to be resilient. I don’t always initially respond well to uncertainty and unpredictability. But I’ve trained myself to look more at how well I bounce back from those difficult moments. In other words, it’s not the getting knocked down I worry about, but how quickly I get back up.

Living with chronic illness has provided ample opportunities to flex the courage and resilience muscles. Recently, I sustained a burn on my skin from phototherapy overexposure that flared my psoriasis. With the coronavirus spreading in the community, I questioned if I should go to the clinic. My dermatologist instead gave me directions on how to treat the burn at home over the online patient portal.

I spent the next four weeks managing the skin burn while figuring out how to conduct daily life in a pandemic. That situation made me dig deep once again to find the courage and resilience my therapist talked about.

Uncertainties about health, future plans, and career will always be with me. Adding on fears of getting sick with COVID-19 and what happens next in our society makes doing so that much more urgent. It’s a daily struggle, and I am genuinely fatigued like so many others with lockdown measures and now what happens as we open the economy back up.

I remind myself in moments like these that I’m no longer that child afraid in the phototherapy booth. I am no longer that college student living under the illusion that I can control my academics and career path. Rather, I look to find order from within amidst the chaos I know I will never be able to control. And as I do, I cherish the value of carrying courage about the unknown, which is fortified by being resilient when unwanted things happen. Together they help me achieve what’s important to me. And that is the difference between being an empowered patient or powerless.

About the author

Howard Chang is an active psoriasis advocate and blogger who shares his journey living with chronic illness on his website PsoHoward and his Everyday Health featured column The Itch to Beat Psoriasis. WEGO Health named him a a 2018 Top 10 Lifetime Achievement Patient Leader in recognition of his patient advocacy efforts. He also volunteers for the National Psoriasis Foundation and works as an ordained minister in the greater Sacramento, CA area. Twitter: @hchang316


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SPM & Health Story Collaborative Join Forces: Please Share Your Stories During the Pandemic https://participatorymedicine.org/epatients/2020/05/spm-health-story-collaborative-join-forces-please-share-your-stories-during-the-pandemic.html https://participatorymedicine.org/epatients/2020/05/spm-health-story-collaborative-join-forces-please-share-your-stories-during-the-pandemic.html#comments Tue, 19 May 2020 20:56:40 +0000 https://participatorymedicine.org/epatients/?p=21693

The Society for Participatory Medicine (SPM) and the Health Story Collaborative (HSC) are partnering during this time to bring the power of storytelling to health care and explore what it means to practice participatory medicine in times of COVID-19. Please read the below and share your stories. In coming weeks watch for other collaborative activities […]

The post SPM & Health Story Collaborative Join Forces: Please Share Your Stories During the Pandemic first appeared on SPM Blog.]]>

The Society for Participatory Medicine (SPM) and the Health Story Collaborative (HSC) are partnering during this time to bring the power of storytelling to health care and explore what it means to practice participatory medicine in times of COVID-19. Please read the below and share your stories.

In coming weeks watch for other collaborative activities including two moving and powerful patient stories co-hosted by SPM, HSC and Inspire, and an interview with Danny Sands, SPM co-founder and Annie Brewster, Health Story Collaborative founder with stories from the front lines.

From Health Story Collaborative

We would like to hear from you and share your stories!

Health Story Collaborative is a non-profit organization whose mission is to harness the healing power of stories.  Our belief, supported by research, is that storytelling is healing for both story sharers and listeners. As we collectively navigate all the challenges we are facing during this pandemic — isolation, risk, sickness, anxiety, fear–our mission of healing through stories feels even more imperative.  Through sharing stories, Health Story Collaborative aims to foster connection and reflection.  You may view our collection of stories by clicking here.

Please consider sharing your story about coping during these challenging times, navigating illness or facing a health challenge, or of being a care provider during these uncertain times. We believe that a story can be told in many ways. We welcome poems, essays, visual art, music, audio clips, or any other creative medium you choose.  Please visit our website for more information regarding our guidelines for story sharing.  Depending on the volume of stories received we cannot guarantee that all stories will be published, but selected submissions will be featured on our Blog.   Regardless of its publishing status, we believe there is value in the process of creating a narrative.

Please share your story with us by emailing us at info@healthstorycollaborative.org.  We look forward to hearing from you!



The Health Story Collaborative Team


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