Patient engagement (as described by 31 non-patients)

by Carolyn Thomas  @HeartSisters

I was one of the four patients interviewed for the Center for Advancing Health report called Here to Stay: What Health Care Leaders Say About Patient Engagement.  It’s an interesting, illuminating and frustrating document to read.

The late Dr. Jessie Gruman, president and founder of the CFAH, wrote in her forward to this report:

”  What are people talking about when they say ‘patient engagement’ anyway?  That phrase encompasses so many concepts and ideas that it’s become meaningless.”

As I wrote here, my own concern (as a person who’s pretty darned engaged in my own health care) is not that the phrase is meaningless. It’s more that non-patients, business and industry have co-opted the concept of patient engagement for their own purposes.

And consider once again that, even in this impressive 170-page CFAH document that is all about patient engagement, there were only four patients interviewed – compared to 31 clinicians,  employers/purchaser representatives, health plan administrators, vendors, community health leaders, government organizations,  health care contractors and consultants.

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You don’t have to delve too far along into the other interviews here before bumping into big fat differences in how patients and non-patients answer identical interview questions about patient engagement.

That’s not surprising. Dave de Bronkart (aka “ePatient Dave”) – one of the three other patients interviewed for the CFAH report* – once told me about this quotation attributed to Ed Roberts (a leading figure in the international disability rights movement):

 “ If we have learned one thing from the civil rights movement in the U.S., it’s that when someone else speaks for you, you lose.”

The differences start emerging shortly after the interview question about this CFAH definition of patient engagement, which is:

“Actions people take to support their health and benefit from their health care.”

For example, Alexandra Drane, interviewed in the Vendors/Health Care Contractors/Consultants section of the report, says she wants the word “patient” taken out of the phrase “patient engagement” entirely, preferring this rather wordy terminology instead:

“The end result of a collaborative effort whereby the health system makes healthy behavior feel desirable and attainable, and as a result, individuals get fired up about their health.”

Also voting to trash the word “patient” is Dr. Arthur Southam (in the Health Plans section) who says that the choice of “patient” in the phrase “patient engagement” may be “off”  because it’s just “too medical care-centric.”  Better terms, he suggests, would be “consumer ” or “individual”. (Perhaps we should be saying “consumer engagement” or “individual engagement”?)

And Dr. Marc Pierson (in the Clinicians section) seems to agree, adding:

“Few or no people I have met define or refer to themselves as patients.

“They understand that a patient is less than a whole person, is less than what they are. I would prefer thinking of ‘people’ engaged in their health and health care.”

First, I’d bet my next snort of nitro spray that many patients would find his condescending description of us (“less than a whole person, less than what they are”) as offensive and inappropriate as I did.

But there’s another glaring mix-up here around such definitions.  Pierson’s preferred substitute for that pesky word “patient” (“people engaged in their health and health care”), in fact, might actually be a more apt definition of those we call the “worried well”, best exemplified in the Quantified Self movement. These extremely engaged non-patients actually enjoy obsessively self-tracking (and then sharing) all remotely trackable data in life: their weight, mood, diet, sexual activity, bowel movements – yes! – exercise, sleep and any other trackable health indicator because they can, not because they have to as Real Live Patients must often do.

And, really – do we even have to worry that self-absorbed Quantified Selfers need to be more engaged in their health?

Here’s a news flash: the reality is that I am a heart patient., a survivor of a misdiagnosed heart attack who now lives with inoperable coronary microvascular disease, a condition that’s debilitating enough to affect most of my waking hours. Every. Single. Day.

This reality does not mean (no matter how Marc Pierson may attempt to define me) that I’m “less than a whole person.”  I may be different than how I used to be, pre-cardiac diagnoses, but last time I checked, I was still indeed a “whole person”.

I’m guessing that neither Drane nor Southam nor Pierson nor others like them who favour getting rid of that unacceptable word “patient” in the term “patient engagement” spend much time dealing with distressing symptoms of chronic and progressive illness as I and millions of other Real Live Patients do. And if they ever have the misfortune one day to learn firsthand what being really sick is really like, we’ll see how “fired up about their health” they’ll actually be.  (See also: ‘Healthy Privilege’ – when you just can’t imagine being sick)

I define and refer to myself as a patient only when it’s necessary to differentiate myself from non-patients – including those who say inane things like:

“After all, we’re all patients anyway, at one time or another in life!” 

(See my response to this preposterous statement published in the BMJ (British Medical Journal): Why Physicians Must Stop Saying: “We Are All Patients”).

And just as industries like Big Pharma are co-opting the concept of patient engagement for financial gain, some non-patients are now co-opting patient status by repeatedly insisting that they too can speak for patients, by virtue of the fact that they’re being paid to tick boxes about us.

Don’t get me wrong, dear readers: this CFAH report is indeed an important and commendable exercise, as explained by Dr. Jessie Gruman herself in exploring how the description of “patient engagement” informs the daily efforts of those who use this term.  This matters because without the voices of non-patients, the report could end up as yet another dusty and ignored patient blog.

Yet when those regarded as “experts” in their fields want to remove the word “patient” entirely, I feel disheartened.

In fact, the report seems to confirm my own initial concerns when I wrote Has Industry Co-Opted Patient Engagement?  years ago.

Unfortunately, the input is ultimately skewed by a lopsided scorecard of contributing voices: 31-4 in favour of non-patients.

FYI, here’s my interview as published in this CFAHreport:

♥  ♥  ♥.

Carolyn Thomas has over 30 years of experience in journalism, marketing, and public relations, including corporate, government, and nonprofit P.R.   In May 2008, while working as the communications coordinator for Canada’s Victoria Hospice Society, Thomas was hospitalized for a myocardial infarction caused by a 99% blocked coronary artery. But two weeks earlier, she had been sent home from the same hospital’s emergency department with a misdiagnosis of acid reflux—despite presenting with textbook heart attack symptoms. Disturbed by her experience and hoping to share what she’d learned with other women, Thomas used her PR experience to launch her blog, Heart Sisters, in April 2009.
Q1.  CFAH: Here is the CFAH definition of patient engagement: “Actions people take to support their health and benefit from their health care.” What’s missing from this definition? What would you add, subtract or word differently?
THOMAS:  This is the definition that I use, too. In fact, I have quoted you in my blog articles about patient engagement.
But I think that sometimes this notion of “actions” assumes that you are not sick.
For example, I attended the 2012 Stanford University Medicine X conference on an ePatient Scholarship. This annual event is billed as “the intersection of health care and technology” and thus attracts a cross-section of health care providers, tech-savvy patients, and the “worried well” hype-meisters of the Quantified Self movement. As a person living with ongoing chronic illness issues, I felt out of place, because so much of what I was hearing simply does not apply to me or to the patients I hear from on my blog, on social media or in my women’s heart health presentations.
It struck me that many of the (young, male) Silicon Valley people I met at Stanford just don’t get it—they don’t get me. They seemed to be living with the luxury of what Dr. Ann Becker-Schutte calls healthy privilege.
It’s sometimes tough to be in a crowd like that—they are so busy high-fiving each other over their shared conviction that technology is the savior of health care as we know it.
Q2.  CFAH: If a person is engaged in their health and health care, what difference does that make? To whom?
THOMAS:  It makes a difference to the patient themselves, of course, and to those who care about them.
I’m absolutely gobsmacked sometimes by the kinds of questions my audience members ask during my Heart-Smart Women talks. For example, an elegantly dressed older woman once raised her beautifully manicured hand during the Q&A portion of my presentation and asked, “Carolyn, my doctor says I have a ‘heart rhythm problem.’ What does that mean?” How are patients like this leaving their doctors’ appointments without understanding even the basics of their diagnoses? And why is she asking me when she won’t ask her own doctor? If she’s like my late mother, it’s probably a combination of not wanting to take up too much of the doctor’s valuable time and not wanting to appear stupid. 
Yet doctors wonder why patients like this end up being non-compliant”—patronizing terminology, by the way, that many of us cannot stand.
Patient engagement can’t help but have an effect on clinicians—both positive and negative. We know that not every physician welcomes what must seem a profound change in the doctor-patient hierarchy. That’s why some docs prefer the less-threatening word “engagement” to the commonly-used alternative “empowered.”
One of my blog readers, for example, described this visit to her new cardiologist:
..“When I first began discussing my condition with him, he said he hadn’t realized I was a doctor. I told him I’m not a doctor, but I am a very good researcher.
“He gave that small, insulting half-laugh that doctors reserve for this response, and said that he wasn’t sure he approved of patients doing research. I told him I had no inclination to apologize for it. I said that I knew he was interested in my health, but not nearly as interested as I am. It’s his job, but it’s my life.”
When I now bring information or questions to my doctors, I expect that they will help me make decisions about my care and also let me help them understand my specific perspective. But I’m thinking that it was far easier in the old days when our health care providers could just say:
“Here’s the diagnosis; here’s the treatment plan; see you in two weeks.”
Q3.  CFAH: As a leader in the patient community, which of these engagement challenges do you address, or are there any types of behavior listed below that you think patient leaders have more or less credibility to address? *
  • Find good clinicians and facilities
  • Communicate with clinicians (doctors, nurses, others)
  • Organize care (appointments, records, referrals)
  • Pay for health care
  • Make treatment decisions
  • Participate in treatment
  • Make and sustain lifestyle behavior change
  • Get preventive health care
  • Plan for the end of life
  • Seek health knowledge

* This list is from the CFAH Engagement Behavior Framework

THOMAS:  The first thing I remind my “constituents” (whether they’re the women in my heart health presentations audiences or my readers) is this:

.“I am not a health care professional – merely a dull-witted heart attack survivor – and nothing I say should ever replace sound medical advice from your own care providers.”

But having said that, I do proactively try to help patients to help themselves by offering general information about engagement challenges.


Q4.  CFAH: What are some interventions that you have heard of that show promise in helping people to engage in their health and health care?

THOMAS:   There has already been significant success with smoking cessation. We are now moving toward an all-out smoking ban in public places here in Canada, for example, and smoking rates are down significantly. And ironically, current quit-smoking programs seem to be shame-based. My theory is that people don’t quit because their docs are telling them not to smoke, but rather because of social ostracism. It sounds odd, but that now appears to be working.  When you’re talking about chronically ill patients, however, you often run into this reality: patients want to stop needing to think every moment about their bodies/health every moment of every day to accommodate this relentless diagnosis of ours!  As oncologist Dr. James Salwitz described one of his “non-compliant” cancer patients:
“He just wants to be a person, and not a patient anymore.”
Q5.  CFAH: What do you see as the greatest barriers to patients being more effectively engaged in their health?
THOMAS:  Here’s a good example: the American Heart Association tweeted recently:
“10 benefits of walking to prevent disease.”
That’s what’s known as an avoidance goal.  I tweeted back to the AHA:
“Why not say: “Walk – so you’ll feel good!”? 
That’s called an approach goal – and behavior scientists tell us that this kind of goal is found to be more attainable than avoidance goals.
So maybe these issues are being ineffectively framed. The last thing most of us want is to think we have to take this action to avoid disease, but we all want to have more fun and feel better.
Also, look at Dr. Victori Montori’s work at Mayo Clinic on what he and his team call the burden of treatment, a key concept in the field of Minimally Disruptive Medicine. This is an innovative alternative to  the current approach (like relentless treating to numbers) that is pervasive in medicine.
Treating to numbers isn’t always evidence-based, however. It may seem counter-intuitive, but intermediate endpoints (targeting lower numbers) are not necessarily connected to better health outcomes, as the controversial December 2013 cholesterol guidelines revealed.
Maybe we will be more engaged in our health care when our symptoms are addressed, when our actions mean that burdensome symptoms become less overwhelming, and when that burden of treatment is eased.
Q6. CFAH: To what extent do you think that efforts by patients can reduce these barriers/increase the capacity of people to engage?
THOMAS:  A 2012 study out of the Palo Alto Medical Foundation and published in the journal Health Affairs about the issue of difficult patientsreally resonated with me.
Until a whole lot of patients are willing to be seen as “difficult,” it’s unrealistic to think that we will rise up as one homogenized voting bloc. That’s not going to happen. Right now, for some patients, even reading stories about this feels too threatening.
I would like to say that patients do hold a key role in increasing capacity to engage, but realistically, the people I see and hear from (those living with chronic illness) are often too sick, too overwhelmed or too exhausted—just from putting one hospital-bootied foot in front of the other—to lead this charge. Maybe it’s generational. Maybe our kids will spearhead the change. Maybe other visionaries like Dr. Victor Montori will lead us by example. And I have far more hope in current medical students reducing barriers to our participation than I do for many current doctors.
Q7.  CFAH: How would you characterize the general attitude of your colleagues/constituents toward patient engagement—its importance, the extent to which it is their concern, etc.?
THOMAS: I think it’s hard to tell because the inspirational patient voices you most often hear from at conferences – like e-Patient Davemake it tempting for non-patients to assume that all of us are or could be like him if only we just had the gumption to do so. This just isn’t true.
I happen to have a public platform from which I can speak up as a patient as my health allows, but that hardly makes me a poster child for engagement, and I’m careful to point out that I don’t and won’t position myself as speaking for all other patients. Others may be just as interested in the concept of patient engagement, but are only able to function as their limitations allow, day by day.
So even the smallest nudge toward increased patient participation is to be celebrated, no matter how small it may seem compared to those who are doing more out there in bigger ways.
Q8.   CFAH: Some people are still not persuaded that engagement is important in achieving better outcomes. What would convince them patient engagement is important – i.e. evidence, examples, regulation, programs – or would persuade them to pay attention to/change their own behavior to become more involved?
THOMAS:  A couple of small but significant ideas:  in the Canadian province of Saskatchewan, doctors are prescribing exercise to their patients on prescription pads. This constitutes a free pass to the YMCA/YWCA with doctor’s orders.
Another program I like is Walk with a Doc,” an international community walking program launched in 2005 by Ohio cardiologist Dr. David Sabgir.  Physician/volunteers can register online and then show up at their local park on Saturday mornings; they give a five- minute health talk and then go for a 45-minute walk with whoever arrives that day. This beautifully broadens the concept of patient engagement to physician engagement. In both cases, the doctor legitimizes the patients’ actions—and in the latter, even participates! Cardiologist Dr. James Beckerman runs a similar program in Oregon – he doesn’t just refer his heart patients to cardiac rehabilitation by checking off a tick box on a hospital discharge form, but his own participation leading evening walks in his popular Heart To Start program (and his “Couch To 5K” training groups) have now morphed into an annual 5k run/walk each February for heart patients and the general public.
People already know the evidence. Very few people don’t know that you should exercise and eat healthy. As cardiologist Dr. John Mandrola likes to say: “You only have to exercise on the days you plan to eat!”
It’s not always money that’s keeping people from engaging in their own health. And information is part of what we need, but our doctors’ endorsement of our participation is key.  Consider, for example, that only 20% of all eligible heart patients are referred by their doctors to cardiac rehabilitation programs despite the well-known long-term effects on improved patient outcomes that such rehab provides.
This failure to refer is an inexcusable example of poor physician engagement.
© 2014 Center for Advancing Health

UPDATE: I was shocked and saddened to learn that Dr. Jessie Gruman died on July 15, 2014, just two weeks after this report was published. My condolences to her family and friends, and to all who will mourn the loss of this visionary advocate for all of us who find ourselves called ‘patients’.
* The four patients interviewed for the CFAH patient engagement report were Eve Harris (breast cancer); Dave de Bronkart (kidney cancer); Kelly Young (rheumatoid arthritis); and Carolyn Thomas (cardiovascular disease).  This Heart Sisters post was also published on the CFAH site at the time.
♥  ♥  ♥
NOTE FROM CAROLYN:  I wrote more on patient engagement and many other topics in my book, A Woman’s Guide to Living With Heart Disease, published by Johns Hopkins University Press. You can ask for it at bookstores (please support your local independent bookseller!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
Q:    Would you expect to see more than four patients interviewed in a report on patient engagement?

13 thoughts on “Patient engagement (as described by 31 non-patients)

  1. Hey there team! Just want to go on record that I have no idea where that quote came from – I was never personally interviewed for this report.


  2. Pingback: mHealth & Behavior Change
  3. I think it is important to define “engagement”. If it means to pay attention, study different view points, study original research, ask questions and finally make decisions for yourself then I am in favor of the concept.

    On the other hand, the prevailing definition is that of “marketing” where the purpose is to allow an outside force to form your opinions for you. If vitamin makers engage you to take their product then you have been engaged to waste your money. So many more unfavorable examples come to mind.

    Liked by 1 person

    1. And that’s the issue exactly. When actual patients talk about patient engagement, they are NOT talking about engaging with vitamin makers (or statin makers). But as soon as industry got wind of the self-serving benefits of climbing onboard the patient engagement train, the phrase was quickly co-opted.

      A truly engaged patient would automatically do some homework on whether or not to take that vitamin (or statin) before deciding.


  4. Carolyn, you asked, “How are patients like this leaving their doctors’ appointments without understanding even the basics of their diagnoses?”

    Our low-tech patient engagement strategy targets that exact issue. Please check out the Right Question Institute: we have developed a strategy called the Right Question-Effective Patient Strategy (RQ-EPS) that engages patients in their healthcare and improves communication between patients and doctors. The strategy teaches patients to ask their own questions so they can make better decisions about their care.

    We would love to learn more about you! Feel free to contact us at

    Liked by 1 person

  5. I have always seen my patients as “patients”, they have come to me to be rehabbed and sent home when they no longer need me.

    The “patient” cannot be removed or we lose the focus on what our job is pertaining to these persons.

    Once they are healed, they are no longer my patients, but a person I have gotten to know and have assisted when they needed it.

    The Long-Term-Care facility I work in does have residents, they live there. The patients are guests in their home for the duration. The facility insists on called my patients “residents”, I find this is a disservice to our patients and to ourselves as professionals.

    When I am at my doctor’s office, I am a patient; when I am home, I am a heart (etc.) patient. However, I am also a well-informed patient with a degree in healthcare. Patronizing me is not a good way to get my trust. “I am your Doctor and I said so” is not an adequate response to my questions and/or ideas for my care.

    Removing “Patient” from the dialogue is not the way to go; while they are consumers of our expertise, they are still in need of guidance and encouragement, something that is not dispensed with a brochure, prescription or Care Plan.

    By removing the “Patient”, we have ditched the human part of our practice.

    Liked by 1 person

  6. I had one young doctor, who went else where to practice, who told me to read everything I could and run it by him at my next visit. He listened, let me ask questions, let me cry. I cried when he was no longer my doctor.

    Then when the worst happened to me, I found another jewel of a doctor but then I had to move after recovering from my quadruple bypass. I now have a Nephrologist (lost left kidney due to cancer) who lets me be involved with my care also. My new Cardiologist listens and encourages me too.

    How did I get so blessed? I feel they see me as a participant in my health and not just a “patient”.

    Liked by 1 person

  7. Yes! Of course! But patient voices aren’t what they really want to hear.

    I was at a conference recently and a cardiologist was speaking about a very relevant topic to my specific situation so I asked a question ensuring that it was on topic, not too narrow. His response under his breath (but fully miked) was “What are you, a physicist?” And then he gave some vague response. A lovely woman who was in her early 80’s and dressed to the nines backed me up by saying, “No, she’s an engineer, but you didn’t answer her question and we want to know the answer!”

    He then gave a more thoughtful and relevant response. (How she knew I was an engineer, I don’t know)

    Liked by 1 person

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