Ten days ago a post here mentioned the 14th ICSI / IHI Colloquium. I said the Society for Participatory Medicine was well represented, including:

• Jessie Gruman, four time cancer patient and founding co-editor of our journal, gave an important breakout session, about which I’ll be writing soon. (Jessie is founder and president of the excellent Center For Advancing Health.)

Jessie’s talk was so good it had me going nuts on Twitter – I couldn’t keep up with all the “tweet-worthy” things that came out of her mouth.

Well, I’ve just re-read her text, and it brought back why I went nuts. I was going to write about it, but I’m just going to post the full text.

For those who don’t know, last fall Jessie underwent surgery for her fourth cancer; she has some experience. The ICSI audience is primarily doctors, nurses, physician practice employees, health plan (insurance) executives, and hospital staff. She spoke to them about the importance of patient engagement (especially the patient’s responsibility), her foundation’s framework for what an engaged patient does, and what the profession must to do make that possible for us.

This is one for the ages.

The Evidence for and Experience of Engaging in Health Care

Jessie Gruman, PhD
Center for Advancing Health

Delivered at the Institute for Clinical Systems Improvement’s Colloquium on
Health Care Transformation: “Thriving in an Era of Health Care Reform: Advancing
Accountability, Affordability and the Patient Experience,” St. Paul, Minnesota,
May 18, 2011

I know there are many demands that compete for your stretched attention, from implementing aspects of health reform to adoption of EHRs, interoperable data systems, staff management, contract negotiations, quality improvement efforts and so much more.

All these affect what you do to and for patients. But what you do with patients is equally important.

I will make the case to you that your patients, your members and their loved ones now face ever more daunting challenges as medicine asks them to take greater responsibility for their care. Attending more closely to these demands will help your patients, your members and their families take on their new responsibilities with greater confidence which will, in turn, benefit you.

Let me first tell you how I became aware of the largely unacknowledged challenge to patients posed by advances in technology: On my 20th birthday, I was diagnosed with cancer and spent considerable time on life support while my doctors tried to halt the cancer’s galloping course through my body. I was devastated. I was just a child. I thought, “I can’t die now – I’m just beginning!”

After I was well enough to go home, I began the daily trek to the hospital for weeks of radiation treatments, followed by two years of debilitating chemotherapy. I was skinny. I was hairless. And I was non‐compliant.

Each time he administered my chemotherapy, my doctor would direct me to take six pills daily at regular intervals for the next two weeks. I didn’t do it.

One day I might take two pills. Or six all at once. Some days I took none.

My doctor warned me to stay home because my immune system was at low ebb and I was at grave risk for infection.

I went out dancing.

I now look back at my behavior in awe: The millions of dollars worth of biomedical research that was distilled into the knowledge and experience and procedures and drugs aimed at a disease that was costing hundreds of thousands of dollars to treat ultimately largely relied on the actions of a weak, skinny, scared adolescent to have its impact. I had to show up. I had to cooperate. I had to take the drugs as scheduled. I had to avoid the risks. I was not a very good patient.

But I was the star of this drama. The central role I had to play in order to achieve the potential benefit of the best available treatment has been brought home to me again and again – through three additional cancer diagnoses, the treatment of a dangerous heart condition and the ongoing management of the conditions and risks that result from that many diagnoses and that much treatment. I’ve learned the importance of my challenging new role.

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.

Things have changed substantially since I began my extensive experience as a patient:

• Better surgical techniques mean we come home from the hospital quicker and sicker and have to provide our own care: We manage the symptoms, operate the devices, do the rehabilitation and calibrate the medications.
• Better drugs help many of us to live long and well despite our HIV/AIDS, cancer, diabetes and lupus, for example, but using them correctly requires us to restructure our lives.
• And the gains in knowledge mean more specialists, more diagnostic tests and more sources of care to be coordinated. And who coordinates all these players and services? We do.

It is abundantly clear that medical science has advanced far more quickly than patient performance has.

Too often we still don’t realize our participation is not really a choice. It is not just a nice thing to do if we feel like it today. It is necessary:

We have to participate actively and knowledgeably in our care
if we are to realize its benefits.

I don’t think most health stakeholders fully recognize this: Almost no one has really thought through what it means to have a health care system that relies so heavily on patients and our loved ones to ultimately realize its potential for improved outcomes.

As people on the front lines of delivering and paying for care, you know too well that there are many of us who will never be able to fulfill our end of the deal: We are already too sick or disabled, we are too young, we are frail mentally, our families don’t have the resources and they lack the health literacy and the confidence to take on these highly complex tasks.

But many more of us could do the work if we had specific tools and support designed to help us.

I believe that a major focus of changes in the delivery of health care must be in enabling and facilitating us and our caregivers to competently engage in our care.

Rather than talk about what clinicians or health plans or hospitals should do – or revisit definitions patient‐centered care – I am going to take the form‐follows‐function approach, that is to ask the question we at the Center for Advancing Health asked ourselves a couple years ago:

If, indeed, all the benefit of health care can be muted or wasted by our lack of engagement in our care, what, specifically, does it mean for us to “engage?”

I am going to walk you briefly through a study we conducted to answer this question – to identify the actions people actually have to perform to benefit from their health care.

And so the question: What does it mean to be “engaged” in our health care?

We defined engagement behaviors as “actions individuals must take to obtain the greatest benefit from the health care services available to them.” We are concerned only with behaviors of individuals relative to their health and health care, not actions of professionals or policies of institutions.

Here are the steps we took to assemble the Engagement Behavior Framework:

1. We interviewed hundred of patients and caregivers about their experience with care.
2. We reviewed the relevant academic and gray literatures.
3. We interviewed leaders in health care, research, health policy, and advocacy who had written and spoken about patient engagement.

After a lot of review by outside experts, we finalized a draft of the Engagement Behavior Framework.

We grouped the 43 engagement behaviors we identified into these ten categories:

1. Find Safe, Decent Care
2. Communicate with Health Care Professionals
3. Organize Health Care
4. Pay for Health Care
5. Make Good Treatment Decisions
6. Participate in Treatment
7. Promote Health
8. Get Preventive Health Care
9. Plan for the End of Life
10. Seek Health Knowledge

As you contemplate the fine print, take these observations into account:

First: Most people do not actually do many of these behaviors. Last year we conducted a study in which we looked at 31 major national health surveys supported by the government and foundations and identified the items that asked people about what they did to find and use safe decent health care.

For the vast majority of behaviors on this list, only one third of respondents perform them.

The picture is not pretty.

Second thing to think about: This Engagement Behavior Framework is not an indictment that blames people who do not take these actions. Rather, it is a description of behaviors linked to health outcomes that must be enabled and facilitated in order to ensure that more of us have the choice to perform them.

Third thing to think about: This is a long list. No one has to do all these things all at once. However, everyone has to do most of these things at some point if they are going to benefit from the care available to them. What does this mean for your ailing neighbor? The single mom with four little kids you saw in the supermarket yesterday? Your dad? And what does that mean about how health care should be organized?

And fourth: Most people are mostly healthy most of the time and so aren’t aware of the many new responsibilities that are now ours. Some people, like me, discover the hard way that different diseases and different settings require different things of us that we don’t expect.

Many of us are going to need a lot of help to effectively perform these actions.

All of us need to know that we are expected to do them. What does THAT imply about changes in health care delivery?

Rather than talk in generalities here, I am going to describe two themes we hear about from patients all the time – and give you two examples of how you can respond, how you can act to engage your patients, your health plan members and their families in their care.

First theme:

In our interviews, we repeatedly hear that

• People can’t figure out how to get their test results.
• They are puzzled about whom to call after hours or on weekends.
• They think that because the receptionist uses a computer that they also have an electronic health record that can be automatically electronically transmitted to other clinicians.
• They are baffled about whom they should talk to regarding billing and insurance problems.

Speaking as a savvy and confident patient who is flummoxed by so much of what takes place in health care, I am regularly surprised by how little you know about how little we patients know.

You are immersed in the health culture. But we don’t live in your world. So we have no idea what you are talking about much of the time.

One way to help us feel competent in such unfamiliar environments is to give use some guidance about what this place is and how it works. What are the rules?

So think along these lines:

When you checked in to the hotel last night… or the last time you went to a hotel… and went to your room, what was sitting on the desk? A guide to the hotel. It lists what services are available and when they are available. It describes where the hotel is located relative to the highway and the airport. It contains information about the phone and TV and radio, pool and fitness center, and how to use the wireless connection. And most importantly, it tells you how to contact the people who can help if you need it with reservations, housekeeping, room service, wake‐up calls.

The services this hotel offers are no less complex than the services many of you offer to patients and their families, though the goal is obviously very different. Are patients and families provided with such a guide when they seek care from your medical practice or are admitted to your facility?

And if not – tell me how we’re supposed to know these things? Should we guess? Or perhaps ask the busy nurses or doctors?

A couple years ago, in response to these findings, we developed a model guide for patients and caregivers that identified the basic information people need to interact over time with a given medical practice or setting. The model includes items such as:

• Contact: phone, fax, email, website
• Location: address, public transportation, parking
• Medical records: what to bring, how to obtain
• Special needs: mobility, language, hearing, vision
• Payment: How, what, when and who to contact
• Tests and test results: Which labs, how results communicated
• Afterhours and emergency care: When and how
• Prescriptions: Refills, who to call about side effects and adverse events
• Care companion: invitation to bring one

By giving us and our families this information, you communicate three important messages:

• First, that we are welcome and that you want us to be comfortable. Learn from successful hotels and treat us like guests.
• The second message is that you want us to make the best possible use of the care and services you are providing.
• And the third message is that you are accountable for what you offer: You have printed it here in black and white that this is how your hospital or practice or clinic operates and you will live up to the commitments you have made.

Now a guide like this is not something you can write on the plane as you return home. While you might be able to outline some of the elements in it, you don’t know what you don’t know. After all, you don’t need a guide, do you? Similarly your staff doesn’t need a guide, but they will have some good ideas about what should be in it – after all, they are the ones who are answering the same questions over and over.

Your main resource in developing such a guide is likely to be your patients and their families. While many of them would not be interested in helping out, you know that there are a few who would be – you know who they are.

Such a guide needs to reflect how patients and families can manage their lives within your setting now – so any such guide needs to be continually updated and tailored to the unique characteristics of your building, staff and services.

Such a basic guide may seem insignificant when you think about the technologies and therapeutic interventions that will be used to get each of your patients functioning as well as they can.

But believe me – we patients don’t see it that way. A guide like this sends a powerful message of inclusion and empathy and it helps us have a sense of control, of competence and of cooperation, all of which is critical for each of us to feel in order to engage in the tasks before us.

The second theme that we hear repeatedly is that we are shocked at how much responsibility we must take on in order to keep our treatment on track.

Here I’m thinking of a young lawyer who waited an agonizing six weeks to see a renowned specialist to treat her newly diagnosed MS, only to find the appointment worthless because her records had not been forwarded as she had requested. No one told her that it was her responsibility to hand‐carry those records if she wanted to be sure they got there.

Or the people who arrived at home after a hospitalization with clear instructions and a hard copy of their discharge plan that they were unable to implement and had to be re‐hospitalized – the single woman who was too disoriented to remember where she put the instructions; the husband away on a business trip and unable to pick up the prescriptions; the confusion about how to work the IV and the oxygen.

Some of these are simple things that in simpler times would have been done for these patients in the hospital but that people felt unprepared to cope with – and were surprised that they were on their own when they were still so vulnerable.

As I noted before, we don’t realize our participation is not an option. It is a requirement if we are going to benefit from our care.

So my question to you is – how do you communicate this sense of urgency and inclusion to the patients and families you care for?

Do you say “none of us can solve the problem caused by your accident or stroke or illness by ourselves – we must work on this together?”

Because you need to: We patients and family members don’t know this. We need to hear explicitly both the approach to the care you offer and the specifics of that care – the most important specifics being what your responsibilities are and what ours are.

After hearing how frustrated people are by trying to figure out what they are supposed to do to benefit from their care, we at the Center for Advancing Health worked with colleagues at Massachusetts General Hospital to develop and test a model “pact” for patients entering a new care setting. The pact is based on behaviors identified on the Engagement Behavior Framework and modeled on a contract used in the Geisinger Proven Care program with cardiac patients.

This pact offers an opportunity to make explicit previously assumed expectations about responsibilities of both providers and patients.

So, for example, a pact might include patients agreeing to behaviors such as “I will make my best effort

to participate fully in my therapy, even when I am feeling depressed or tired.” Or “I will ask questions when any explanations and next steps are not clear.”

On its end, the care team might agree to such behaviors as “We will ask specifically what your concerns and questions are when we are coming to an agreement about you goals for treatment and we will respond to concerns and answer questions.” Or, “We will help you understand your treatment options by discussing the pros and cons and possible outcomes with you because there is often more than one possible response to your symptoms and condition.”

You may dismiss this explicit discussion of expectations about asking questions, for example, as too obvious. Don’t. In surveys and studies and interviews we hear again and again that people are deeply uncomfortable asking questions of their care providers – we believe you will experience our queries as challenging your authority and fear punishment. Or we believe that if we need to know something, you will tell us.

There is a model pact posted on the CFAH website. While the model would need to be adapted for use in your specific setting, it spells out the responsibilities of patients and the team in a way that is both reciprocal and possible for all to aspire to.

Once again, developing and implementing such a pact may seem inconsequential relative to the work you plan to supervise with each patient. But don’t overlook the fact that in a few short moments, if you are all fortunate, this family and this patient are leaving the office or clinic or hospital. And they’ll be on their own. They – we – need to know where our responsibilities lie.

The sooner we know what the expectations are, the sooner we understand what our role is, the better prepared we will be to assume that role. The belief that we will figure this out ourselves ultimately wastes our time and yours.

Like a guide, a pact conveys important messages. You are saying to us that:

• We are part of the team.
• We have significant, complex responsibilities that you have helped us understand and define.
• And you will help us learn how to do them.

By having this conversation based on a written document, you signal that our participation is critical and you are holding yourselves accountable for helping us to participate competently.

In closing, I’d like to reflect on how these two themes and recommendations are related to the quality of the care that is delivered in your hospital or clinic or through your health plan.

You realize, of course, that we patients are as ignorant as most health professionals about what health care quality actually is. For you, quality involves everything from guideline‐based care to pay‐for‐performance to hand‐washing campaigns to the reduction of medical errors.

We patients are shocked when we hear that much of our care is not based on any scientific evidence and even more alarmed when we hear that even when there is evidence of what appropriate care is, we only receive it part of the time.

But since most of us are mostly healthy most of the time, we don’t think about this too much – and besides, we believe in our doctor the way many people believe in their Congressional representative: Congress had a 9% approval rating in April, but most people still think their own representative is doing fine.

By implementing a guide to your practice setting and a pact among clinical teams, patients and caregivers, you demonstrate in a modest way that you are organized, empathic and accountable; your staff and your policies support us and our loved ones to find our unique paths to assuming the heavy burden of responsibility for care, working with each of us to manage it in our own way.

Realistically, expecting such tools as a guide or a pact to drive a change in attitudes, behaviors and practices is asking the tail to wag the dog. These are tactical measures that subtly challenge an outdated approach to health and illness that must undergo a transformation if it is to deliver on its promise of improved outcomes. But if you implement them, you will be doing so at a time when increasingly, hospitals and physicians see their best efforts undermined because they have failed to engage and enlist their patients in their own care.

So give it a try: Take these first small steps. See if they make a difference.

You need to know how important this is to us: By directing your attention purposefully to our concerns, you help us to do the work we must do to live for as long and as well as we can – with all the grace we can muster, all the support we can find and all the dignity we deserve.

________

Resources mentioned above:

• The CFAH framework, “A New Definition of Patient Engagement” (PDF, 2632k)
• New June 7: here’s the two page summary of the framework, which she handed out during her talk
• [Broken link as of 3/29/2015] The model pact (PDF, 69k) developed by CFAH with Mass. General.