Here’s my simple definition of peer-to-peer healthcare:
Patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people. Technology helps to surface and organize that knowledge to make it useful for as many people as possible.
An idea whose time has come? Let’s think that through, beginning with an excerpt of Kevin Kelly’s post, The Natural History of a New Idea:
The notion that ideas have lifecycles has many antecedents. Various people get credit with first articulating it. Here is my version:
The Natural History of a New Idea:
1) Outright wacko.
“This is worthless nonsense.”
2) Odd but unproven.
“This is an interesting, but perverse, point of view.”
3) True but trivial.
“This may be correct, but it is quite unimportant.”
“What’s new? This is what we’ve said all along.”
Apply to your favorite example.
I’ve seen this abbreviated to: “Crazy. Crazy. Crazy. Obvious.” But I think it’s more useful to pay attention to the gradations. Where along this scale is your idea?
Pew Internet’s research has documented people’s interest in sharing what they know (the first part of peer-to-peer healthcare). I’d say we hover between “odd but unproven” and “true but trivial,” with the exception of some health digerati who have literally said “duh.”
Other researchers take patients’ and caregivers’ knowledge to the next level to make it useful. Four recent examples:
1) Ian Eslick, a PhD candidate at the MIT Media Lab, posted his plans to harness patient-generated information to improve care. Specifically, he will “enable patient communities to convert anecdotes into structured self-experiments that apply to their daily lives.” Read the PDF: Personalized health experiments to optimize well-being and enable scientific discovery.
2) Kristina Doing-Harris and Qing Zeng-Treitler, researchers at the University of Utah, crawled PatientsLikeMe (with the company’s permission) to identify new health terms used by consumers as they discussed their conditions. Read the article: Computer-Assisted Update of a Consumer Health Vocabulary Through Mining of Social Network Data (JMIR).
3) Elissa R. Weitzman, Ben Adida, Skyler Kelemen, and Ken Mandl of Children’s Hospital in Boston created a privacy-preserving social networking software application for members of the TuDiabetes community to report and chart hemoglobin A1c values. Read the article: Sharing Data for Public Health Research by Members of an International Online Diabetes Social Network (PLoS ONE).
4) Paul Wicks, Timothy E. Vaughan, Michael P. Massagli, and Jamie Heywood of PatientsLikeMe blew up the idea that double-blind randomized trials are the only valid path to clinical insights. Their study: Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm (Nature Biotechnology).
I often think in metaphors and similes, so forgive the following summary: Eslick harvests clinical insights from naturally-occurring social networks, whereas Weitzman et al. created a farm and invited an existing community to work on it. Wicks et al. not only created a farm, but a community to work on it (as well as inviting other “farmers” along, like Doing-Harris and Zeng-Treitler).
Then there is the question of scale: micro vs. macro vs. massive. To stretch the metaphor, Eslick is like a mushroom hunter, Weitzman et al. & TuDiabetes operate a co-operative farm, and Wicks et al. & PatientsLikeMe are an agribusiness.
All of this research is moving peer-to-peer healthcare along the new idea scale.
In fact, I’m having fun watching people’s reactions (and mine) when I describe these new studies: from indifference (bummer, they don’t get it), to puzzlement (OK, we’re at least up to “odd, but unproven”), to excitement (oh good, let’s talk). It speaks volumes to me that the Wall Street Journal covered the PatientsLikeMe study, for example, and other major news outlets did not.
A nice article in SearchHealthIT connected the TuDiabetes and the PatientsLikeMe studies and featured some intriguing quotes:
“We found this very high level of what we called ‘information altruism.’ People were willing, in a privacy-preserving model, to make individual decisions about how they were going to share their data.” – Elissa Weitzman
The word “altruism” jumped out at me, since it resonates with other observations of how people stick around online health communities to help other people who come along after them. It also resonated with what Weitzman and Mandl found in a previous study: 9 in 10 patients using a personally-controlled health record are willing to share medical information for health research (under certain conditions).
The other quote encapsulates the difference between PatientsLikeMe and every other online patient site I have seen:
“It’s easier to add a social network to a clinical research platform than to think about adding a clinical research platform to a social network.” – Jamie Heywood
But is that 100% true? Ian Eslick’s project is a potential proof that you can graft a clinical research platform on to an existing social network.
When I chatted with Jamie about all this, he pointed me to Kevin Kelly’s mind-blowing “Speculations on the Future of Science.” Here’s a quote, but please read the whole thing when you have time:
New tools enable new structures of knowledge and new ways of discovery. The achievement of science is to know new things; the evolution of science is to know them in new ways. What evolves is less the body of what we know and more the nature of our knowing.
My two favorite concepts in the piece are Triple-Blind Experiments (pattern recognition based on streams of data, collected unbeknownst to the population being studied) and Wiki-Science (massive collaborative research will be the first word on a new area).
What if all the storytelling, discussions, and data-sharing among patients and caregivers could be coded, analyzed, and harvested for insights (as Eslick and Doing-Harris/Qing Zeng-Treitler discuss)? What if social networking data could join the “big data” party and allow public health researchers to engage in syndromic surveillance, as Mandl et al. presciently described in 2004? Is that outright wacko? Or are these new scientific methods on the path to Triple-Blind Experiments?
What if, instead of running clinical trials on patients, scientists ran trials with patients (a turn of phrase used by Siddhartha Mukherjee to describe Herceptin trials and as Wicks et al. discuss)? Crazy? Or the beginning of Wiki-Science?
What are your ideas? Where are they along the new idea scale? What are you doing to move them ahead to obvious – and is there a downside to getting there?
Love this, Susannah… with two thoughts to add:
First – your “What if, running clinical trials on patients, scientists ran trials with patients” – is what I’ve said for years that it’s all about the preposition.
Second – that this is a perfect description of disruption for two audiences: the uninitiated, or those who are so mired that they never leave the “this is whacko” stage.
Thanks for your (as always) sage commentary.
Let’s keep updating that post of yours :)
Have you read “The Emperor of All Maladies” yet, where I link to the quote about the Herceptin trials? Mukherjee unravels the history of cancer treatment as if it was a murder mystery (and it many ways it is). The smoking gun through the decades is clinicians and researchers ignoring discoveries at the edges of their disciplines or observations by outsiders.
His sections on Herceptin and Gleevec acknowledge of the role of patients, but mostly in terms of their demand for treatments, not for helping scientists to connect the dots. That story is told in other places, however. For example: http://www.pewinternet.org/Reports/2010/30–Cancer-20/Implications/Section-1.aspx
As to your second point, yes, I wrote this with both a general audience and an expert audience in mind. It’s the only way these ideas will gain purchase!
Susannah, I think you nailed something extremely important with your quote about how new tools enable new ways of discovery. I believe that the examples you provide are leading indicators of a Cambrian explosion of models for the acquisition of scientific understanding and actionable insight. There are many kinds of information that can be gleaned through the lens of science, and not all of them need to be the universal assertions of cause and effect clinical trials emphasize.
This explosion of kind of knowledge and methodologies for acquisition emerges from the intersection of new technologies for observation (personal devices & data mining), cheap computation, near universal human and machine connectivity (observations, peer review and collaboration), and the changes in culture (social games, collective intelligence, e-patients, citizen science) that are rooted in the worth and autonomy of the individual.
These technologies can and are being combined in a myriad of ways by everyone from traditional healthcare institutions to government to the non-profit and for-profit sectors; I believe that institutional culture is slowly opening up to the notion that we can still learn a great deal even if we can’t make universal assertions from perfectly run clinical studies.
For example, I’m seeing numerous institutional scenarios where the everyday life of the individual is a rich source of information, properly harnessed and this data can help the individual, inform other people’s decisions, and motivate the institutions of science to ask better questions. I think we’ll be hearing more “obvious” and less “crazy” in the years to come.
PS – You nailed another thing too: I’m definitely into mushrooms!
Phew! I was a little nervous – “what if Ian’s allergic to mushrooms?”
I love your list of factors – an excellent addition to the discussion. Thanks so much.
Thanks for your interesting and thought provoking post as well as the comments provided by others.
I co-authored a paper on peer-to-peer collaboration, “The experiential health information processing model: supporting collaborative web-based patient education” (link below) that may be of help to those doing research in this area.
This is *exactly* what I’m hoping for – comments linking to other resources related to these ideas. I had to resist linking to more studies and examples, but the post was already full of link bling.
Please, everyone, post your favorite studies and examples, past and present, published and unpublished (ie, blog posts, etc). We need to build up the evidence base.
Laura’s follow-up comments on Twitter are so important, I’m going to bring them over. Please excuse the brevity, non-Twitter people: “Lack of common terms may be hampering us. My paper uses different terms than your blog. May be an artifact of academia vs. plain language that leads us to overlooking each other’s work.”
Yes, we use different terms and that may hamper progress if academics overlook the contributions that non-academics bring to the field, and vice-versa. I confess I did a quick scan of the citations in Laura’s article, just to see if we shared a literature-view (similar to a world-view). And of course I scanned for my own name :)
I want to do some deeper thinking about this, but here’s a quick response from my personal perspective.
First, please know that I could have written a book chapter (and just might) on this topic and will cite many, many more sources, including academic ones. This is a first draft, a stone’s throw into a pool of water, a request for comment.
Second, I try to take in a mix of sources by reading academic journals, attending conferences with diverse speakers on the agenda, following all sorts of people on Twitter, reading all kinds of blogs. I footnote all over the map in my blog posts and my reports.
Third, my employer, the Pew Research Center, values plain language, mainstream publications, and broad impact and I tailor my work accordingly. I’m not an academic and I don’t even try to play one on TV. My goal is to contribute data to the public conversation about the internet’s impact on health & health care. That conversation happens in a lot of places, including the academy.
One point pertaining directly to the post: PatientsLikeMe is a dot-com that pursued and attained dot-edu credibility with this Nature Biotechnology publication. They took peer-to-peer to peer review and lived to tell. Let’s see if the academy can learn from them.
Again, thanks so much for the critique.
Susannah — well done. I love it when someone raises the periscope, takes a good long look around and makes sense of it all for the rest of us. You’ve done that with this post (and so has Ian with his comment).
There’s such a fantastic opportunity to harvest individually generated data for insights and new knowledge. I’d like to think that researchers would be drooling over the possibilities, though I’m not sure. Realizing this potential still runs into limitations: islands of data don’t connect; data are locked up as business assets; people with data don’t always have an easy mechanism to share it.
Your post inspired me to think about this last challenge. The research by Weitzman and Mandl suggests that under the right conditions, people will choose the path of information altruism. So then part of the challenge is to make that choice not theoretical. but highly practical — or easy. In effect, a “green button” that says “share it.” Obviously there’s a lot that goes behind that — making sure people understand the choice they’re making, having a infrastructure that can receive such “donations” of data, but you get the point.
Thanks for making me think.
Wait, did everyone catch that?
Steve just proposed a Green Button, which would allow people to easily share their health data – akin to the Blue Button, which allows people to easily download their health data – see: http://www.va.gov/bluebutton/
LOL – Check this February tweet from HIMSS, from Your Nurse Is On’s @MatthewBrowning:
That HealthCamp was last October. The idea’s been floating through the Twitterverse – I don’t know if I mentioned it to Steve or he picked it up there, or originated it in parallel – or, Steve, were you at that HealthCamp?? In any case, clearly it’s memeing!
Social media and unconferences FTW.
The idea is, when someone’s viewing their medical data, give them a “Donate My Data” button – sort of a cross between Blue Button and being an organ donor.
I can’t overstate the importance of this. In my famous PHR debacle two years ago, a key problem was that my hospital’s interface to Google had never been tested with real world data. And a key reason for that, I suspect (not sure), is that it would have been quite a HIPAA chore to gather enough patients’ real data to be useful.
We the undersigned would gladly donate our data, just like our organs and our cadaver, for the benefit of science and other patients.
I like that, and people might even be more willing if there’s an option for a posthumous scenario, like the organ donor. That way they don’t have to worry about sharing data that could directly affect them, if they’re concerned. Over time, that could be a big deal.
Personally, I would share my own data now if I could guarantee it was anonymized somehow, although I don’t have much of interest to donate.
Does anyone have a good primer available on EHR and how it could be used in a fashion where the patient is able to annotate additional data/agreement/disagreement with existing data?
That’s great — I should’ve known someone would have thought of the idea before :)
Is anybody running with it?
I would love to know if anyone is running with the Green Button idea. I was in a brainstorming session with a few folks including Lybba, QuantumLeap, John Wilbanks and some patient advocates and we came up with the idea of a national campaign to get 0.1% of all US citizens to participate in a voluntary sharing of their medical histories into a neutral databank for research purposes.
A dataset like this help perform comparative outcome analyses across medical institutions, communities, geographic regions – something it is virtually impossible to do today. It would allow patients to use their data to hold their providers and drug providers accountable. It could identify outliers that might suggest better practices that could be shared amongst community members.
The challenge is finding mechanisms for reducing the friction of data sharing, such as a Green Button. I don’t know if this hurdle is something we could see being done in 1-2 years, or 10 years. Anyone have a good feel for this?
My thoughts are we will launch a green button on our clinical trial site just as soon as legal advice can be found to for the language above the “I accept” button. Any data would be donated anonymously. We already have most of the anonymity infrastructure in place.
It would be great if there were others willing to contribute some intellectual capital and elbow grease. A decentralized Open API could follow.
For the record, although we have been working on anonymity for registered users of our clinical trial eligibility screening system, which requires that they provide data about themselves, and we were aware of the blue button, it was your post made it all come together for me as a “green” button.
I’ve decided on the spot to run with it.
Implementation should not be that difficult for us of a basic version since so many of what I imagine the moving parts to be we have in place or in the lab. Still we are a small group and would benefit from outside expertise to make sure we’ve got the bases covered.
Thank you for the idea. It really brings everything together for me.
I’m so glad this discussion has been helpful. I’m inspired that you’re taking action!
Now I have to thank Matthew Browning for releasing the concept into the air :)
While the information provided by Pew is important and valid I believe it is only the top of the cake. Over the past year I have led market research with online health users to determine how they use health information and why. What we found out is that the majority will use social media for health information as “part of a process” to collect information. I also found out that how much time they spend online and where they go depends on the condition and whether they are a patient or caregiver.
The most interesting aspect of my research was that 90% of people we surveyed said they would not follow a pharma brand on social media because of concerns about privacy and the trust and the value of information. This does not mean they will not go to read posts it means they will not become active participants.
We have moved from an era of too little information to a time of too much information and what should concern us all is that at a time when more people are going online for health information less are going to see their doctor. One could theorize that this is because people are self diagnosing which is dangerous.
People trust other people more than they trust healthcare companies but that erosion in trust could also lead to dangerous decisions being made for the patient. While the Pew information is great it is only one piece of the puzzle and healthcare providers and companies need to do their research to truly understand what is happening and more importantly why
> One could theorize that this is because people are self diagnosing which is dangerous.
That feels like a pretty big leap – do you have any indication that’s true? Or for the assertion that people aren’t going to their doctor? Last I heard there’s a huge shortage of primary care, which wouldn’t suggest people prefer not to see a doctor… :–)
I’m puzzled that you feel people don’t trust health companies; I hear that you surveyed about following a pharma company, but Edelman’s updated trust barometer (see slide 5 here) says people are trusting business more, not less. And pharma is at 63%, middle of the pack on trust. (Slide 13) Might your sample or questions be different from Edelman’s?
Do you publish your questions and dataset as Pew does? In a situation like this that would be awesome!
Richard, I’d love to see more of your research, if you can share it (email me if you can’t post it publicly: sfox AT pewinternet.org).
Nobody has a lock on this field of research, not dot-org (like Pew Internet), not dot-edu, not dot-com. We’re all learning as we go and I very much appreciate your contributing your insights here.
I am reading the comments to Susannah’s phantastic post, that I had not read before to decipher the meaning of the Green Button….
Reading your comment I noted you say: “The most interesting aspect of my research was that 90% of people we surveyed said they would not follow a pharma brand on social media because of concerns about privacy and the trust and the value of information. This does not mean they will not go to read posts it means they will not become active participants”.
Is this research published? Would appreciate to get a copy?
What you say about the evolution of ideas has the ring of truth and plenty of supporting data.
There’s another side to the story that isn’t as seemingly dismissive of new ideas and this material resides in the literature on adoption of innovation — see especially the work of Everett Rogers (http://en.wikipedia.org/wiki/Everett_Rogers).
Somebody does get turned on by new ideas and then passes along that enthusiasm to others who, in turn, infect others.
Yup, there are naysayers and curmudgeons who resist and then co-opt ideas. But social contagions are quite real and there is a process by which they come into being. The process depends on enthusiasts who are open to new ideas and your framework doesn’t give them their rightful place.
Lee, I don’t know how I could have spent a lifetime in high tech without ever hearing of Everett Rogers and the diffusion of innovation. My humble and deep thanks – now I have to go rethink everything I thought I knew.:–)
Well, that was quick, Lee – Rogers’ work is right at the beginning of Crossing the Chasm, twenty years ago, so it was so fundamental that it’s been long forgotten and little recognized. Thanks.
Everyone, Lee is my boss and you can see here why I’ve worked for him for so many years – wise AND optimistic.
He sketched out an adoption curve on paper at the office that I can’t replicate, but it’s awesome.
I started the post on the “crazy” foot because of Kevin Kelly’s essay, but yes, social contagion is for real. I think a lot of people are counting on it to tip the balance of behavior in health care toward participation.
Was it by any chance the adoption curve on the Everett Rogers Wikipedia page? :–)
Diffusion of Ideas
Yes! But he was contrasting/connecting the adoption curve with a “crazy, crazy, crazy, obvious” curve. Fun to think about how to visualize it.
The other relevant curve to consider here is the Gartner Hype Cycle curve: http://en.wikipedia.org/wiki/Hype_cycle, which gives a different perspective on technology diffusion. It’s sometimes helpful to think where a phenomenon is in both the Rogers and Gartner curves and recognize that neither is deterministic.
The quoted comment from Susannah’s original entry above, “New tools enable new structures of knowledge and new ways of discovery” reminds me of another paper I co-authored, “Shifting from Shared to Collaborative Decision Making: A Change in Thinking and Doing” (link below). In this paper we discuss a concept called collaborative knowledge building, which is similar to what this idea of structuring knowledge to support the development of new ideas is trying to convey.
This article and the one I mentioned above in my earlier comment are both in open access journals, free for anyone with Internet access to read. I don’t know if any epatients ever see, read or get anything out of these papers. But know that we are trying to help!
I do know from my time in the HIV/AIDS movement that if a patient wants to be at the table with the scientists, helping design RCTs, etc. they need to be educated. Please see Epstein’s, “Impure Science: AIDS, Activism, and the Politics of Knowledge” (http://amzn.to/mpAPZT) for an excellent summary of how this was accomplished. Significant changes to medicine and research were accomplished during this time period. But sometimes I feel like we’ve forgotten not only all that the AIDS movement did but HOW we did it.
People with HIV/AIDS were heavily involved in their care, including designing studies, changing policies and directing hoe funding should be dispersed. How many illness communities can say that today? And this was done collaborated for the most part WITHOUT the aid of technology like the Internet. Reminds me of that quote about Ginger Rogers dancing with Fred Astaire – she did all her dance moves backwards while wearing high heels. We can do this and so much more.
Thanks, Laura! Great perspective and I’ll dig in to the citations.
And yes, I love my ipad, but that autocorrect makes me want to throw it across the room sometimes.
heh, can’t resist… http://www.damnyouautocorrect.com/ (Not Safe For Work)
Wow! Thanks Susannah, and everyone else, you’ve given me reading for lunch for the next week! Keep it coming! (and please don’t refrain from posting links if you have extras, just drop them into a “Further Reading” section at the end of the article…)
Why do patients participate in clinical research at all? To me, the “Natural History of a New Idea” still applies to clinical trials as long as such a low percentage of patients are participating. As patients begin to flock to social networks as clinical research studies/clinical research studies as social networks, though, I hope that the idea of patient participation in care and research becomes less odd and trivial.
Also, opportunities to measure the connections within a social network of patients will, I think, give an even greater insight into how peer-to-peer data-sharing affects care.
>Why do patients participate in clinical research at all?
Because sometimes their life depends on it, even if it is only a phase I it may offer some hope or buy some time.
> why do people participate in a clinical trial
Allison, pardon, I don’t know you, but have you ever faced the end of your life, or another life-altering illness?
It’s sobering, and can change people’s perspective in unexpected ways. Some people look at the end of their days (or the end of life as they know it) and choose to contribute value to those who will come later.
And believe it or not, some people are simply altruistic, generously wanting to help others without facing the end of life.
My oncologist is fond of pointing out that not a stitch of new treatment has been developed (in recently decades) without patients who were willing to participate in clinical trails. So whatever treatment you will receive someday, trust me, you’ll be grateful for those patients and families who sat in that chair, talked with their care providers, read all those forms, and chose to help.
I am more than grateful to those who participate in clinical trials, but that number is still too low. I should have been more specific with my question: how can we drive participation in clinical trials, and does sharing data through social networks present a new opportunity for participation in clinical research?
People are successfully matched to possible clinical trials in much greater numbers then they ever enroll. Partly this is to the good, since many trial choices are poor alternatives to standard therapies.
The principle reason that these people, and many if not most others do not enroll is because their own doctors feel they are not able, or are not willing to endorse any clinical trial. Doctors by in large certainly don’t suggest trial information very often.
To make matters even worse a physicians practice losses something on the order of $2200. each time a patient joins a trial. (A patient generally does not return, and $2000,+ is the replacement cost for bringing in a patient)
If you think of the pharma model of large advertising budgets to drive patient into their doctors offices asking for samples (restless leg syndrome anyone?) we believe that the solution is similar for clinical trial access and recruitment.
That is to say if tools are provided for “health information seekers” that allow them to screen themselves for clinical trial eligibility on coarse filtered basis and visit their doctors who could then review a handful of these trials and possible check into eligibility and/or inquire with investigators about possible compassionate use exceptions etc.
The idea is not to ask doctors permission from outside the encounter rather give them the problem from with in it. It works for “restless leg syndrome and it is the answer to the clinical trial problem.
Whew, I’m glad I didn’t take my interpretation too seriously, and said “I don’t know you.”
> How can we drive participation?
GREAT question. My onc, for one, will thank you a thousand times if this leads to a better answer.
Anyone out there, have YOU participated in a clinical trial? What were your thoughts? How would you persuade another to, if they want to?
I may be able to offer a little bit of insight into this area since my background is in clinical research. I started off working directly with patients and now focus on recruitment.
By far the biggest hurdle to clinical trials recruitment is awareness. The public is generally not aware and doctors are not informing them. Interestingly, the vast majority of patients who do participate in a clinical trial would consider doing so again.
For stats and other information on clinical trial participation, check out the Center for Information & Study on Clinical Trials Participation (CISCRP) website:
In terms of patient motivation for participation, my experience has been that these are the primary reasons:
– Altruism – People want to contribute to research and help others with a similar condition, especially when the existing treatments on the market are not satisfactory.
– Access to Healthcare – For people without insurance, clinical trials can offer an opportunity to get healthcare services at no charge. And for people with insurance, my experience is that clinical trials offer superior healthcare to what’s generally available in the system. Clinical trials participants spend much more time with clinical researchers than their normal providers, and visits are extremely thorough. Relationships are forged between patients and clinical researchers in a way that typically does not happen in a normal healthcare scenario. In addition, principal investigators are often specialists in their area, so a patient can get access to a doctor who is an expert on his/her condition. Certainly, this motivation could prompt a lengthy discussion about the state of our healthcare system, but I’ll stick to the topic at hand.
– Access to New Treatment – I find that this motivation comes into play much more when patients are not happy with treatments on the market. If patients are satisfied with what is on the market, they are less likely to seek out a clinical trial.
I could cite other motivations but I think most motivation falls into or is related to one of the 3 major groups I list above.
As for improving clinical trials participation, that’s a question everyone in the industry would like answered. My personal opinion is that the industry needs to work on long-term awareness initiatives rather than focusing completely on study-specific recruitment. And I think these long term initiatives need to provide value to patients, rather than just imploring them to join a trial. One example would be making clinical trials results publicly available and searchable.
Though we aren’t there yet, I think EHRs hold the most exciting potential for advancing patient recruitment.
>how can we drive participation in clinical trials, and
By engaging the patients in the process.
>does sharing data through social networks present a new opportunity for participation in clinical research
Yes and no. Depends on the study protocol but certainly helps to advertise that studies are enrolling, like using http://www.clinicaltrials.gov/
The 4 examples you gave are very good, but they do not represent the extent of what patients have been doing, on their own, to change dramatically the possible outcomes for a given disease, using all the tools made available through the network to go way beyond data collection.
Some patient groups have gone WAY beyond what you describe, bypassing the system altogether and creating treatments, without any clinical trial along the way. As usual, since this is happening in communities existing in the deep web, it remains difficult for an organization like Pew to even know the existence of such activities. But I am aware of a few such examples, including 1 community where over 1,000 patients have been using, over the last 10 years, a novel treatment invented by a caregiver. It’s a much more radical model that was developed, as usual, as the communities & their active members tried to understand the consequences of their actions. Granted, it raises many issues, but it shows how far activated patient groups can impact care.
As for increasing patient participation in clinical trials, start by designing trials that have a real impact, on the patients, not on an academic career or on a supplementary FDA approval.
When new drugs are clearly better than the existing one, patient recruitment is rarely a problem. Poor participation in trials often results from poor recruitment criteria. If you recruit the wrong patients, the results will be poor and patients will know that before anybody else.
Gilles, we’ve been discussing for years that ACOR data (and knowledge) are hidden from the public. If tools like KK describes start to evolve, I wonder if ACOR knowledge will in effect be ostracized, in a separate node. Is there a way to avoid that?
Dave, ACOR is just a tiny example of THAT internet reality. Just imagine thousands of similar communities, usually involved in a single disease, where for clear privacy reasons, decisions were made long ago to keep the conversations out of the search engines.
Until someone finds a way to bring these groups in, Susannah’s data will remain skewed. I follow a significant number of these email based private groups and witness great similarities between all the active ones.They don’t have the technological dazzle of PLM but in terms of peer-to-peer knowledge sharing and building they often remain levels above anything else.
Working on devising solutions to surface these groups is a priority.
Knowledge building in medicine is not all about data collection. Expert patients/caregivers often have a wide knowledge about a condition that is based on a lot more than structured data. That’ why work like Ian’s project have the potential to help all of us understand how this knowledge develops
These closed online communities work because active, motivated patients gather and translate data for the sake of new members, many of whom would struggle to make sense of raw, empirical data. It is not just the subtle embedding of knowledge in the narrative, it is the dynamic exchange. Gathering records and exposing Gilles’ “deep internet” points a finger towards the answers we need, but it takes a community to help translate those answers into each individual’s decision making process. (Except perhaps for the early adopter e-patients we all know!)
Socrates comes to mind here. He believed that the written word was dangerous; readers would be under the illusion of knowledge when all they had was data. Datasets amplify this problem. We are presented with a sea of correlations, alternatives, a sense of what is popular, and trial options – but ultimately the knowledge has to become part of our decision making process. Families, physicians, and the scientific community all need to become involved in that in more effective ways.
Ian’s “Families, physicians & the scientific community all need to become involved in that in more effective ways” is IMO spot on!
I suppose this is what motivated the LAM site. Unfortunately, most of the medical online communities I have seen until now have recreated silos, often without realizing it. With the goal to enhance patient active engagement it is very easy to create a new silo where health professionals are not welcome. Many of the most famous health2.0 “patient oriented” sites have a very strong “patient-only” bias that blocks the appropriate transfer of significant discoveries back to the health professionals that really should have immediate access to this info.
Just as we have discovered that the e-patients exist because “health professionals can’t do it alone”, we will soon realize the limits of patient-only communities as discovery tools. My bet is that the next iteration of medical online communities will finally bring together all the clinical stakeholders (patients/caregivers, scientists and clinicians). If we can do this successfully we will finally have built a real sustainable business model for medical online communities.
>As usual, since this is happening in communities existing in the deep web, it remains difficult for an organization like Pew to even know the existence of such activities.
This is documented in the Epstein book I cited above and was accomplished without using the Internet.
>Poor participation in trials often results from poor recruitment criteria. If you recruit the wrong patients, the results will be poor and patients will know that before anybody else.
Recruitment criteria is really related to inclusion/exclusion parameters associated with the study and are dependent upon the research question(s). And this is one of the reasons why the patients should be involved in the design of the trials.
By anybodies measure the clinical trial systems meets the functional definition of broken. That it so is no accident. That this suits the interests of many is a subject out of the scope of this discussion.
“Traditionally science gives knowledge to clinicians who pass this knowledge down to medical patients”
Supporting a system whereby your doctor is supposed to tell you much of anything outside his own practice is, well crazy. Your doctor needs your help. Part of the cost associated with accepting that help is giving up a measure of control. Not just for your doctor but all the players up and down the line. Just how much control the greater medical establishment is about to give up in exchange for a plausible way forward is a question they no longer have control over. A few of them know this and are getting while the getting is good.
“We are all agreed that your theory is crazy. The question that divides us is whether it is crazy enough to have a chance of being correct.” Niels Bohr
An Open Clinical Trial Movement: The clinical trial system after the revolution
Look at the clinical trial recruiting problem, and drug development as a whole from the patients side as not an information access but an information hierarchy problem.
If medical patients could be included (as a peer) in the discussion of whether or a not a clinical trial is a suitable adjust therapy then they are invested in the outcome of the trial not only for their sake but for the sake of a greater community of their peers. Patients like me indeed.
Open up trials to compassionate use, send patients home to self administer their medication.
Encourage them to share their experiences publicly. Support them with video on-demand case management, RF-ID tagged dispensers and the like to monitor compliance all integrated into their eMR. Its their eMR and sharing its contents broadly shouldn’t be out of the question. Publish your eMR data as a live web service to Facebook now.
We are way past “wackco”, and a little past “odd” having just arrived at true but not quite trivial. It will have appeared to have been trivial soon enough
Thanks for another great post.
The concept that the evolution of communications will utterly and irrevocably change everything at some point in the intermediate future is received in different ways by different communities of interest.
Those invested in speaking truth to power will go at it hammer and tongs in perpetuity. They’ll fall firmly into the ‘crazy’ camp, regardless of their agenda simply as a consequence of their evangelical zeal.
Those with a vested interest in the maintenance of the status quo will also be voting ‘crazy’ frequently and en masse, but for different reasons.
Neither of the positions delineated above is of any utility to those who want to build our future.
Screaming for change doesn’t make it happen.
Shouting down change won’t stop the swelling of its voice.
But who is actually going to *make* change happen?
Those who perceive the sheer hard work involved in moving from ‘crazy’ to ‘obvious’ are more likely to adopt an intermediate position in order to advance the agenda, and that is ‘plausible’.
‘Plausible’ isn’t going to work for those demaning ‘change, now!’
‘Plausible’ is not going to calm the racing hearts of those who believe that they may be able to discern the edges of their empires crumbling, and the dissolution of the ideologies that maintain them in positions of authority.
However, ‘plausible’ is a way of opening up a discussion around how to change ‘crazy’ into ‘obvious’ for those who have vision enough to see its potential.
Let plausible be our default position.
Then, for example, the integration of patient-reported information into the design and delivery of every aspect of healthcare will seem less like a lofty aspiration, and more like the stuff of our day-to-day activity, regardless of the stakeholder group we work within.
Call me crazy, but is it plausible that every day’s labour could be taking us closer to an actually existing state of affairs where the obvious is self-evident not as an idea, but rather through its manifestation in what we have built around us?
I’m floored by this comment (or is it a manifesto?)
Have you participated in scenario planning exercises (requisite Wikipedia link: http://en.wikipedia.org/wiki/Scenario_planning)? I’d love to brainstorm about the driving forces and markers for the possible future you outline. It’s probably fodder for another post (or even a conference) but quick reactions/ideas welcome.
Scenario planning can be great, but it can also be one of those activities that those who give lip-service to an idea’s plausiblity adopt as a consequence of the fact that their unstated personal opinion of the subject in hand veers closer to ‘crazy’.
What I mean by this is: where scenario planning discussions tend toward the scheduling of more meetings to have more discussions (and we’ve all got trapped in that miserably entropic state at some stage in our professional lives :)) then little of value is achieved.
Yet, few effective strategies are developed on the fly – although many effective strategies are *adapted* on the fly.
So: what’s to be done?
In my experience, the only people to trust with something as important as scenario planning are ‘doers’: those who have to be wrested away from whatever they are building kicking and screaming and practically forced to participate, who resent every minute they spend in ‘meetings’, and will deliver outstanding, insightful, practical transformative ideas before gratefully fleeing from the room. You may even be able to persuade them to deliver on them when they’re looking for their next project in the afterglow of the previous success – when they’re at their hungriest.
The moral: never let anyone attend a scenario planning meeting who actually wants to be there. Nothing of much utility is likely to emerge from them.
*How about a “Green Button” standards committee?*
We will participate and donate our work to the open source and implement whatever we come up with at clinicaltrialselect.org.
I’ll figure out how to host the spec online but we will need legal review…
*Doers wanted* Any thoughts?
Hi, Andrew. I had to read your post a few times to try to understand what you are saying.
In the patient world, especially the “rare” disease world (or is it the “rarely diagnosed world?), we feel like there is a lot of good talk, but also a lot of hot air. Talk is great. I see a lot of good “talk”. What I don’t see is change. Nothing has changed. Not in my world, anyway. The only “change” I have had since 1980 is the communication world-wide with folks via the internet. Obviously a good change, but in my medical world, in my healthcare world, nada. Zilch. Ok..maybe prescriptions are faxed or sent electronically. That’s all I can see right off the bat.
This is an excellent post with many great links to examples of how this concept really works. When my now departed husband was going through chemo and radiation we were blessed with a team of specialists who incorporated the wisdom of patients to provide us with solutions to all of the nagging things that come with cancer therapies (nausea, constipation, itchy skin, etc). Former and current patients become an extension of your caregiving team providing valuable insight and information from the front lines. It absolutely makes sense for the medical community to embrace what happens anyway and conduct trials WITH patients. Brava to an idea long overdue!
Karen, tears came to my eyes as I read your comment, it means that much to me that it resonates with you. Thanks so much.
Hear that rumbling? That’s the sound of the ground shifting beneath all of health and health care.
It’s the shift in our understanding of what data are valid and valuable. It’s the shift in how we collect data and how we turn it into knowledge. It’s the shift in who determines what’s valuable and what’s knowledge.
For an individual, it’s a shift in the user interface for health and health care from old doc Welby to a cloud-enabled set of tools, apps, social communities, and knowledge resources. Where there’s more science—a well-understood condition—it makes providers supporters; where there’s less science, less expert knowledge, it makes the hard-earned experience of patients and families much more valuable and easier to access.
For the research enterprise, as you noted Susannah, new tools will enable new ways of discovery. I suspect that means that we will see challenges to the long-held gold standard of scientific evidence. Also, new research partnerships forming around data resources—you noted a number. Johns Hopkins and Walgreens just announced a partnership to promote population-based research (http://bit.ly/izQUlb).
There are implications, too, for providers, insurers, managed care, hospitals, any organization whose foundation/model is at least 20 years old, maybe even 10.
I’m heartened to read Ian Eslick’s comment that he sees examples of institutions making use of the information people produce in their everyday lives.
I think the crazy-crazy-obvious discussion really only happens at a certain level. For most, we will be blissfully unaware of the changes as they develop. Then we’ll deal with them once they arrive.
*How about a “Green Button” standards committee?*
We will participate and donate our work to the open source and implement whatever we come up with at clinicaltrialselect.org.
I’ll figure out how to host the spec online but we will need legal review…
*Doers wanted* Any thoughts?
By the logic of my post, I have to pretend I don’t want to be, though. [scowls]
Sorry for the short notice but we’ve got a call scheduled with the VA next week about buttons, blue/green etc. if you’d like an update and/or to offer some input send me mail [email@example.com] and suggest a time we might speak.
Wow. I just spent 20 minutes that I didn’t have reading these comments. And learned more than I would have doing pretty much anything else for 20 minutes :)
One of the things we are learning in our work building a collaborative chronic care network (C3N) (www.c3nproject.org) is how to engage patients and clinicians as collaborators with one another. Etienne nailed it – “your doctor needs your help.” Unfortunately, most doctors don’t realize this. We are working on some small prototypes that we hope will demonstrate to doctors (with numbers) that having activated, engaged patients will actually make their lives easier. It’s a paradigm shift.
But as more clinicians realize that the data they have at hand is often insufficient for making treatment decisions and that better data at greater scale (including patient reported outcomes) will make it easier to develop treatment plans that work (a la Ian’s n=1 recommender system), the shift will come.
Michael is being modest. C3N is an amazing research project that collaborates closely with ImproveCareNow, a network of clinics serving pediatric IBD patients. ICN systematically records and shares outcome data across clinics; these measures are evidence of practices that provide improved outcomes and as they are understood, are spread across the network. ICN has shown some remarkable results in only a few years (such as 49-73% of their 10k pediatric patients in remission in 4 years with no new drugs).
C3N is about bringing patients more directly into the innovation process. My favorite project focuses on single-subject trials of treatment variations to systematically discover the best treatment for each individual. The project started by reaching out to patients and asking what they were interested in learning about (diet, lifestyle, etc.). Everyone involved is already at or near “obvious” on the isssue of patient/caretaker involvement leading to improved outcomes.
If our blog had a “like” button I’d punch it for this comment. Michael is being modest — dig in to C3N (the more I do, the more I want to learn more).
(warm happy feelings)
My grandmother used to say “To me, he’s an expert. But to an expert, is he an expert?”
Thanks, Ian and Susannah :)
Here’s the thing: The C3N needs everyone – patients, families, clinicians, scientists – collaborating to improve health for the whole community. If anyone does check us out at c3nproject.org and wants to make a difference, send us email – we need you.
I can tell you that the legal tools needed for the “green button” (or whatever button it is that lets patients share de-identified data) will be available within the next few months, at least in beta version. I’ll be working on them as part of my involvement as a Board member at Sage Bionetworks. They will be free, as will the process for achieving informed consent before someone clicks that green button. You might want to check out the Group D summary and videos from the Sage Bionetworks Commons Congress last month – see http://sagecongress.org/WP/2011presentations/
Thank you John!
What a shot in the arm:-) (Dave what a great resource this is)
> what a great resource this is
It’s SO important for everyone to get this, to “dig it” in beatnik terms. (No I wasn’t one.)
IT’S THE LONG TAIL. Our unconnected initiatives, far apart and unknown to each other, each representing some potential, are discovering each other and being aggregated, through social media. The value of each is truly, not just “hypically,” multiplied.
A few years ago Ted Eytan and Susannah Fox attended one of the first health unconferences in DC and sent me a coffee mug from CafePress that “defines” Web 2.0 in a formula:
Web 2.0 = ( Me * Youn)Us
(“Web 2. 0 is me, times you to the N, to the power of Us.”) (“To the N” means the more of us there are, the greater the effect.)
I can’t find it for sale on CafePress anymore, but I showed it at the end of this 2 minute video for a class of med students given by @Berci.
Excellent article, but I have a tiny criticism. Online mental health peers are a very active part of peer-to-peer (and peer-to-clinician/researcher) health care. It’s discouraging to see the words “crazy” and “wacko” in a discussion relevant to mental health consumers. I doubt you would use words like “cripples” or “sickos” here, so please avoid language that stigmatizes people with mental health issues. Simply a matter of respect and inclusion. Thanks. :)
Hi Sandra – good point – a couple of thoughts come to mind.
I didn’t write the post, but note that we were citing the views of others, who are indeed at those times being disparaging. Using their language in no way endorses that behavior. Plus, note that the whole point is that those people turn out to be wrong.
For what it’s worth, a couple of our founders work in mental health, and as you may know, our journal has had two or three articles recently about patient-defined, participatory thinking in specific mental health topics.
Personally (not speaking for anyone else), I’ve long felt that “You’re crazy” really means “I can’t imagine seeing things your way.” That fits perfectly with the point of this post: people who say it often don’t realize that the limitation is on their side of the table.
Thanks, Sandra, for the comment – completely valid – and thanks, Dave, for the reply, which I also agree with. Language is important and we all need reminders to be precise & respectful, even as we’re being provocative & vivid.
Wow! I am amazed and excited to see the “Green Button” idea getting some traction- We’ve been bouncing it around for some time now :-) Susannah, great discussion provoking article ;-)
In response to a discussion on the “Blue Button” and how effective it was at allowing patients to download their own data that began to drift into possibilities and the difficulties in getting good patient data to analyze, I proposed that we create a “Green Button” that allows patients to voluntarily donate their data to be used to improve healthcare and allow for the “crowd-sourcing” of “real-life” clinical data. (Thanks to Dave & Mike for the shout out) A tangential suggestion of an opposing “Red Button” for those with medical histories that they would rather not share into the public domain for easy “opt-out”. The thinking here was that many people are altruistic, well intentioned and generous enough to be transparent with their health data, or parts of it, to advance the common good. Think “organ donors”.
We would hope that this data would be anonymized and made freely available for analysis to study diagnoses, treatments, prescriptions, outcomes, side effects, successes and failures. The possibility of crowd-driven drug trials, black box warnings and recalls is awesome, even more powerful would be the detection of new methods of diagnosing, tracking, moderating or curing diseases and conditions.
A person’s medical history and data is theirs to do with as they wish, If they choose to make this information available for study, we need a way for them to do it easily, safely and effortlessly. Anecdotal evidence, on the individual level, is easy to discount and this fact is used by powerful medical marketing concerns to persuade us that failures of our healthcare system, failures of treatment protocols, and failures of pharmaceuticals are isolated incidents, or worse, all in our heads. Multiple sources of anecdotal evidence, collected and analyzed within a structured framework, begins to gain validity, becomes the “wisdom of the crowd” and can begin to approach hermeneutics in usefulness and practicality.
Because what we need to study and implement is old-fashioned practicality- What ACTUALLY works. I would prefer to believe the lived results of thousands of individuals reporting in concert than a “well-funded” (cough cough) study by an “impartial researcher” with “close ties” to a major pharmaceutical or device manufacturer. And do NOT even get me started on the FDA… A system that will criminalize patients that refuse to be “compliant” has no interest in our safety, outcomes or wellness- and never will.
I believe that “we the people” are in charge of our healthcare, our wellness, our treatment modalities, our support communities, our safety and, yes, our data. Arbitrary regulation, increased barriers to entry and a governmental enforcement arm have made innovation and crowd-sourced wellness and treatments seem difficult or impossible to bring into the public domain. This is changing, patients are people, the people are empowered and the existing systematic healthcare paradigms are changing forever. Free the Data! Green Button, Red Button or Blue- The future of healthcare is all about YOU!!
So to use the example of our anonymized clinical trial search systems’ registration system we could offer a green button (ACCEPT) to opt-in (share their de-identified data, effectively a subset of Hx data) AND a red button (DO NOT ACCEPT) for those who might feel otherwise but still desire to save their search results in the form of a clinical trial eligibility report? We could use John Wilbanks’/Sage Bionetworks upcoming work on the legal side for the agreement that would proceed either of these choices.
Does this seem more of less correct to you? Does anybody else have any input?
>As someone who’s worked a bit in UI design, with tiny knowledge of icon design, I want to inject a caution:
Let’s make sure the “green button” and “red button” in no way resemble the design of the blue button. Key elements where we want to avoid confusion are the “arrow in an inbox” metaphor and the layout of “Download My Data.” A good principle is to imagine someone looking at it with their glasses off in a steamy bathroom. :–) I’m sure that can be solved…
Although I am inclined to agree with you, it is ultimately up to the “green Button” standards committee:-) (Andrew Spong and I so far)
Seriously you are right of course, unless one were to approach the VA and see if they are interested in adopting the green button (red button)standard they helped inspire. In that case all three of these buttons would want to be similar/identical except for color.
Think about color blindness when you’re doing this too, red/green are probably bad colors to pick, actually.
> red & green / color blindness
All the more reason to leave the iconography to professionals :)
> approach the VA
Yes, though I suspect this idea has FAR broader applicability than just those who support Blue Button.
(Which, btw, has always included CMS (Medicare/Medicaid) and now also includes the Department of Defense, i.e. all active military.)
One thing we DO want to mimic from the VA’s execution of the Blue Button: its durability. Tonight Lucien Engelen posted on Twitter that he’d accidentally laundered the Blue Button I gave him this month, and it survived unscathed:
Blue Button: Built To Last!
What a great article! Brilliant. This is the sort of reflection we should be having. Thanks for pointing out these articles too.
Good point Jon. (It had escaped me) The VA’s blue button seems to have accommodated this possibility with their design.
Just a quick note to say that I’m reading every comment and I’m genuinely touched by the response this post is receiving. It’s now a party rolling on by itself – thanks!
aack! I meant to say “pushes “Like” button” :)
>aack! I meant to say “pushes “Like” button” :)
Did you mean that the green button should be integrated with Facebook’s “Like” button?
I lived it with http://cushings-help.com ‘s message boards.
> I lived it …
Could you say more, Robin? A lot of people are reading this thread now. I know you and your Cushing’s community have generated terrific value for each other through peer-to-peer.
We absolutely have to have great value for each other.
There are so few of us that even most doctors won’t see a Cushing’s patient during their practice – or they won’t recognize it because they don’t expect to ever see a person with this disease.
Our friends families tend to believe the doctors – we couldn’t have this disease because it’s too rare.
So, we have to stick together if we want any kind of support.
Thanks, Mary … it’s hard for most people to believe that most people don’t believe you! Such a paradox.
And then, how frustrating to figure it out and STILL have people not quite believe it.
For those who don’t know, can you link to a classic post about what this journey is like? (Presuming such a “here’s how it is, folks” post exists.)
Dave, your response didn’t have a reply link so I’m talking to myself :)
Here are a couple good links:
I’ve regained my life in many ways thanks to the Cushing’s Help community. Without them I never would have got my diagnosis and treatment. I had my BLA (bilateral adrenalectomy) just over a year ago and since then I’ve gone back to school and I played ice hockey for the first time in 2.5 years last week. I still have issues living without my adrenal glands and my cushie/BLA buddies are there for me. They pick me up when I fall down and I do the same in return. We live in a world where doctors don’t understand us or our disease process so the only way to save our lives is for us to band together. It’s pretty sad when you actually wish for cancer because there’s more support and understanding connected to it. Cancer patients generally don’t have to fight for every single scrap of health care they get. Doctors fall at the feet of cancer patients and promise them the moon, Cushing’s patients languish for years pleading for help only to be told no. We’re just fat, crazy and lazy, which couldn’t be farther from the truth.
On the idea of getting patients into clinical trials, why not run ones we actually want to participate in? The lack of trials for Cushing’s/Addison’s disease is seriously appalling! There is one I’m dying to get into, but it’s only open to Swedes and Norwegians. That doesn’t do me any good. I”m pissed at the NIH for even listing it on clinicaltrials.gov. Why get my hopes up that I might have a chance at something even better when I’m not allowed in the trial?
Not to mention, endocrinology is stuck in the stone ages, they don’t want to move forward. Look how slowly insulin pumps have moved into the diabetic world. Now imagine how long it will take me to get one to replace my adrenal glands? Not very likely in my lifetime, if ever. Doctors need to shift from seeing patients eating, breathing and walking, and thinking they’re fine. They need to look up and see that we want more. We want lives. We want to be productive. We want a chance to really live, not just fight for survival every day. I’m not OK with status quo, I want more and I’m capable of it if I’m given the opportunity to make choices to advance my care. Listen to me, make me a partner in my health.
Hi, Dave. Thanks to Mary I just saw this again.
Here is my story, briefly, and it is pretty much 1000’s of other folks’ stories:
I am 53. Even growing up, although a normal weight, I was always shorter than all my family/relatives. I always had a tummy (never flat) and I could not tolerate heat. I had aches/pains which were shushed off by my parents and doctors as “growing pains”, but I wasn’t growing. I didn’t grow past the age of 12. I was 5’2″ and 114 pounds when I was 12, and my doctor fussed at me and told me to watch my weight. I remember it like yesterday.
I tend to be an overachiever so did everything other teenagers do, and excelled in everything I tried, but it seemed I had to work harder than some at the physical things. For example, I loved to run, and in college I ran with a group of folks daily. It got easier for them and they ran further with greater ease each time. Me? It got harder and harder for me. I hurt so badly after each run that it was sheer torture to do the next one. But I did. And I looked great but I couldn’t keep up with them. I eventually had to find another partner. I had no one who could/would explain that to me.
Fast forward. After my first daughter was born, I now know my Cushing’s “bloomed”. I got striae AFTER she was born. I couldn’t lose the weight, my fatigue was terrible, and I got these fat “lumps” (now known as supraclavicular fat pads) which my doctor actually LAUGHED about when I questioned why I had them. He told me to “go home, lose the weight”. That was the mantra I heard for the next 20+ years as I got worse and worse. I saw umpteen dozen doctors, then finally gave up. I ate healthily, fed my children and my then husband healthily, and we lived healthy lives. Although we divorced for other reasons, my inability to lose weight and the fatigue I fought while maintaining a home plus working did wreak havoc on my marriage.
In 2004, my Cushing’s had worn me down so badly, and I still go that same mantra from the doctors, I was afraid for my life. My blood pressure was not under control, although I was on 4 (4!!!) meds to try to control it, my fatigue was unbearable, and the mental issues from what I now know as almost now growth hormone, no estogen, no LH, no FSH, and no testosterone, just to mention a few, were causing me to have terrible mental and physical problems.
I found a doctor who tried the fen-phen combo with me (we now know that is very unsafe). I lost a few pounds, ate only 800 or less calories a day, and then gained 50+ pounds on that diet. She threw up her hands.
I ended up in the ER one day. While at work, I had severe left side pain, but it wasn’t chest pain. I was “buzzing” inside. I was scared. I know now my cortisol was extremely high. I didn’t know that then and I was scared. A co-worker/friend took me to the ER. They couldn’t find anything. My friend asked the doctor there to recommend a good PCP. He wouldn’t. She looked at him (and he did care!) and said, “If this was your wife, who would you take her to see?”. He gave us a name-Dr. M. God bless my friend and this doctor.
I got an appointment with Dr. M., and she saw me within days. While examining me, she asked about my symptoms, and I told her I still lactated while my baby was then 20 years old. She checked, I did. I’ll never forget what she said to me, because these were the words which led me to the Cushing’s Help website and support (message) boards. She said, “Robin, I don’t know what this is, but I do know this is endocrine in nature.”
2 things stand out about this doctor. First, she was willing to admit what she didn’t know but try to figure it out, and 2) she was willing to share that with me.
I did what any nerd would do. I got on the internet. I searched my symptoms and the word “endocrine”. By this time it was 2005. March 2005. I found MaryO’s site, joined the boards, and got the information I needed. To be honest, it scared me so much that I went into denial and left for several months until I was so sick I knew I needed help. In the meantime, Dr. M had sent me to the only local group of endocrinologists around where I live. The doctor I saw there was so shocked by my lactation he drew back on disgust (yes, it was and even his nurse apologized for it later) and said, “What do you think I can do for you?”. I said, “Nothing, obviously”, got dressed and left.
Dr. M, God bless her, didn’t give up. I won’t go into all the details about all the doctors I saw with her help, but I went back to the Cushings-Help boards. That is where I found out about Dr. F. in Los Angeles, and she encouraged me to see him. Since I was going to be there anyway teaching for Oracle at UCLA, I scheduled an appointment.
This appointment changed my life. Literally. I had a tumor on my pituitary which was causing Cushing’s Disease plus preventing my pituitary from producing all those hormones I mentioned above. I was severely hypothyroid. Treating that was a huge improvement immediately. With the help of these boards, I learned how to test, how to cope, and had people who UNDERSTOOD! OMG. Someone understood. Do you know how that changed my life????
Since then, I’ve had a bilateral adrenalectomy, and every day is still a challenge. These same people are there for me and I am there for them. Between us, we have more knowledge than any doctor.
For example, one of our folks had an infection and was prescribed Bactim. She has had a BLA. Bactim causes potassium to rise. A BLAer already has to watch for high potassium/low sodium. We take fludrocortisone to keep this in balance because the adrenal glands are supposed to do this with aldosterone. Another BLAer who had taken Bactrim had a serious, life-threatening reaction to Bactrim due to high potassium it caused and could have died. She shared that with us. The original BLAer mentioned above called her endo for help. He told her he didn’t know about antibiotics and to call her PCP. He was a specialist. Her PCP did change it but only because of what her patient had learned through our group. This is one of the sinkholes in health care that we fall into without each other.
After this long diatribe, I will end with this: Read the very recent comments on one of my old 365Cushing’s blog posts: Day 273 in the life of a Cushing’s patient. This is what we do. Emma is now on the Cushings-Help boards, her mom has several phone numbers to call of parents who have kids with Cushing’s, and we care.
We all have Mary O’Connor to thank. She is the one who cared enough to start the Cushing’s Help site, who put her blood, sweat and tears into it, and who financially kept it going over all these years. She taught herself the skills needed to do this. She is one awesome lady and I love her dearly. She saved my life.
As a footnote: Since my BLA (a year ago June 16), life is glorious. I still have a long way to go, daily there are challenges dealing with the hormone replacements, but I am able to do SO MUCH MORE. I have a grandson due in July, and wonderful family who have learned so much because of my battles and who care, too.
INCREDIBLE, Robin. I knew only the smallest bits of this story. Thanks so much for sharing the whole thing here.
There seems to be so much in common between the Cushing’s world and the rheumatoid arthritis world, exemplified by @RAWarrior Kelly Young and her peers. I wonder what these diseases have in common, other than a desperate need for a Nobel-winning breakthrough by a doctor who gets it … and is listened to by his/her peers.
Anyone know of any other diseases that are in the same boat? I know the fibromyalgia community doesn’t have much help available, but I’m not sure if they’re told they’re crazy or are simply wrong.
I’m so grateful to you for sharing your story, which illustrates the challenges that people face when they don’t have a diagnosis and yet clearly have a need for interventions. You were N=1 for too many years (and maybe still are in some ways) but at least now you have a community to learn along with going forward.
RE: “Green Button Initiative”
We have started reaching and speaking to our contacts at the VA, CMS, Microsoft, Google and Adobe about their possible participation in a “Green Button” for the de-identified donation of personal medical data to research starting with clinical trial eligibility data based on the VA’s Blue Button initiative.
We would greatly appreciate any contacts, introductions, assistance, collaboration or advice any of you could offer us with an eye towards initial deployment sometime over the next few months at clinicaltrialselect.org; with the possibility of wider deployment to follow.
If this is worth doing and I believe that it is, I see no reason not to, well, just do it.
If you think you can help, or think you know someone else who could, please get in touch.
Clinical Trial Select, Inc.
– a 501c3 public charity
I work with the Clinical Groupware Collaborative (www.clinicalgroupwarecollaborative.org). We’re a non-profit focused on the use of the web to build a simple, open and privacy-aware health care infrastructure. Think of an open platform akin to android, but web-based, for health care. Several of our members have been involved in developing Blue Button, the Direct Project (http://directproject.org/), and P4 (http://healthurl.com/www/P4.html) among others. We have a weekly call for pilots and collaborations, anyone can register here: http://www.clinicalgroupwarecollaborative.org/events.aspx . We also have a linked in Group that we just opened: http://www.linkedin.com/groups/Clinical-Groupware-Collaborative-3883682
More open data, connectivity, modular systems, standards and better privacy are all part of the discussion and I’d encourage anyone interested in these topics to join in. It seems to me the “green button” idea could be a part of P4, where there’s a portal for patients to share their Blue Button info with those they select.
I signed up for the weekly call (P4) registered with the LinkedIn group, bookmarked your site and gave you a “Like” on Facebook for good measure.
Thank you_very much. (I’m still expecting to hear from the rest of you after fireworks apple pie and the like)
Great thanks. I also sent the info line an email, happy to chat about this any time.
I look forward to learning more about Clinical Trial Select.
Someone recently mentioned OpenTrials ( http://reddes.bvsaude.org/projects/clinical-trials/wiki/OpenTrials ) from Brazil . Are you familiar?
Mentioned in comment for a piece on The Health Information Economy I did, posted on opensource.org. Also pretty relevant to these comments and p2p health care.
I just read your piece on data liquidity. the concept reminds of “clinical trial dial-tone” which is how we refer to the sort of personalized clinical trial eligibility web-service data we see eMR/PHR subscripting to, perhaps even before any search for a trial is undertaken so that a dynamically updated coarse filtered list of possible trial choices is also available for review should any member of a person’s circle of care team want to look into the matter.
BTW I responded to your email a few hours ago with more information, which I assume you recieved.
Hi Susanna. Brilliant perspective here – thanks for this. My cardiologist observed last week to me: “You live with this 24/7 – I don’t!”
You wrote: “…people stick around online health communities to help other people who come along after them…”
This phenomenon is also well-explained in Dr. Al Siebert’s intriguing book ‘The Survivor Personality’. For example:
“Some survivors remain emotionally wounded for life. They relive and re-experience distressing moments again and again.
“Other survivors recover fairly well with the help of family, friends, or appropriate professional help.
“A third group, however, do more than simply recover. This group shares two important things in common.
1. “They integrate the traumatic experience into their identity and make the experience a defining part of their life story.
2. They talk or write about the trauma in a way that is helpful to others.”
Highly recommended book for all patients! More at “Why We Keep Telling – and Re-Telling – Our Heart Attack Stories” –
Thanks, Carolyn! I love that post of yours – everyone, please do yourself a favor and click through to read it.
You might also be interested in Jessie Gruman’s recent speech, posted here:
Here’s a quote along the lines of what your cardiologist observed:
“I am constantly impressed with the tools that are now available to treat diagnoses that – even a decade ago – were death sentences. And I am so very grateful for them.
But what is widely overlooked about these advances is the extent to which their success depends on our participation. We have to show up. We have to do the exercises. We have to take the pills. We have to avoid the risks – or we don’t realize the benefit.”
As a heart attack survivor, I prefer to view my “death sentence” diagnosis as a “LIFE sentence” instead…. :-)
Regina Holliday has given us all a gift (but me especially) with this essay and painting:
Skip past the too-kind description of me & my work to read her vision of data donation:
Can you imagine going to the DMV to renew your ID or your Drivers license and the staff would ask you two questions? Of course the standard, “Would you like to be an organ donor in the event of your death?” But what if that was followed by, “Would you like to release the content of your EMR/PHR for the purpose scientific study?”
Can you imagine a world where HIPPA was used in a different way? I sign a HIPPA release. I give permission to share my information. Some folks phrase this as “waiving my rights.” I disagree. I am using my right to share data.
I wonder how much our appreciation for data would change, if weren’t quite so clean? Humans are messy. Our lives and loves are messy. Not everything is black and white within medicine. To make a place for the patient story in the world of HIT, sometimes we have to use names. Sometimes we have to make personal.
> “Your doctor needs your help”
Your researchers and scientists need your help as well.
As noted above patients should be involved in the design of clinical trials But (as Giles points out above) existing Health 2.0 systems seem to separate patients from providers (from scientist too). Does a focus group fulfill capturing “the patient”? An engagement with a disease non-profit? I agree that the next generation needs to bring patients, providers, and researchers TOGETHER.
Count me in for a Green Button (despite my being color-blind, I still support the color). I may suggest Green+ for those patients that are willing to be identified and contacted (potentially to call-back for genotyping, etc).
And thank you for an afternoon of great reading.
>I may suggest Green+ for those patients that are >willing to be identified and contacted >(potentially to call-back for genotyping, etc).
It has been our plan to roll out a craigslist sort of “nym” server to allow medical consumers to be anonymously contacted, a la Craigslist, leaving the choice to “opt-in” to the conversation with their true identity or to communicate through the nym server unless and until they and/or their medical team, thinks it makes sense to identify themselves. If this nym server (not entirely trivial from an engineering perspective) facility were in place then the standard “green button” as we’ve been describing here would suffice, I think. Maybe its a case of Green Button 1.0 and Green Button 2.0 (with full nym server capabilities)
I’d love to here your thoughts on this possibility.
Hi Susannah Fox,
I got your post and really impressed with your detailed post about trials related tasks and issues. Well I like trible blinded experiments becuase then prevent any type of biased.
But I was not aware about wiki science. Now I learn nice things from you via your informative post.
You can write in http://ClinicalOcean.com also. If you are interested.