CFAH interviewed four patient advocates as part of our research for Here to Stay: What Health Care Leaders Say About Patient Engagement:
- Dave "e-Patient Dave" deBronkart – Patient Advocate and Author, Let Patients Help
- Eve Harris – Patient Advocate and Navigator, Nashua, NH
- Carolyn Thomas – Patient Advocate and Founder, Heart Sisters and The Ethical Nag: Marketing Ethics for the Easily Swayed blogs, Victoria, Canada
- Kelly Young – Patient Advocate, President of the Rheumatoid Patient Foundation, and Founder of Rheumatoid Arthritis Warrior blog, Cocoa, FL
Over 35 health care stakeholders were interviewed in total, representing seven key groups: patients, health care consultants and contractors, clinicians, employers, health plans, community health leaders, and government officials. Six overarching themes emerged:
- Engagement is active.
- The health care system doesn't make it easy.
- Everyone benefits from engagement.
- Engagement is demanding, and many are unprepared.
- Partnerships are required.
- It's like the Wild West.
Here are some excerpts from the patients we interviewed:
CFAH: Here is the CFAH definition of patient engagement: "Actions people take to support their health and benefit from their health care." What would you add, subtract, or word differently?
DEBRONKART: I love it, but there's a trap. How widely do you define "support," "benefit from," and "their health care"? On the surface it sounds like the usual meaning – health things we see in magazines all the time, and doctor visits, plus all the activities in the CFAH model. But increasingly I see activated patients taking "to benefit from their health care" to a much deeper level, becoming full partners in practice management, health policy, and even in medical research.
Engagement goes hand in hand with empowerment. A disempowered person shrugs hopelessly and says, "There's nothin' I can do about it." That's powerless, and somebody with no power sees no reason to be engaged, so they treat health care like a car in a car wash: they roll up the windows and get things done to them. In contrast, an empowered, engaged person says, "There are things I can do," and they get a move on.
HARRIS: It's a good definition and is comprehensive. Actions are measureable. But engagement is a state of mind, a shift in the relationship between docs and patients, with the goal to support patients' health. As a patient navigator, how to benefit from provider encounters is where I spend time. I see an opportunity there. Although most of "health behavior" takes place elsewhere, I'm interested in the interaction, in the patient-provider relationship, setting that up for success.
For example, in the current system, patients spend a lot of prep time figuring out how their insurance works and then they sit anxiously in front of a provider, feeling like less than a full partner – this is not the way to get value.
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 the notion of "actions" assumes that you are not sick.
I attended the 2012 Stanford University Medicine X conference on an ePatient Scholarship. This annual conference 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" hypesters of the Quantified Self movement. As a person living with ongoing chronic illness issues, I felt so out of place, because so much of what I was hearing simply does not apply to me or to the patients I talk to on social media or in my women's heart health presentations. It struck me that many of the Silicon Valley people I met there just don't get it – they don't get me. They seem to be living with the luxury of what Dr. Ann Becker Shute 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.
I would probably rate low on the Patient Activation Measure® even though I am curious, involved, knowledgeable, and as active as I'm able to be as a patient.
CFAH: If a person is engaged in their health and health care, what difference does that make? To whom?
HARRIS: It made a difference to me. I was an employee at a major academic cancer center about one day prior to my initial diagnosis. By the time I came into the system I was already my surgeon's press agent; she was one of my higher profile internal clients. I had great treatment from my providers. They expected that I would want to see and would understand data; I saw the benefit of increasing my level of being engaged. I was in a medical situation with lots of shades of gray; I had ductal carcinoma in situ, sometimes called "stage zero" cancer. My provider was involved in developing decision support tools. The argument is still going on about how much treatment it requires, but being engaged helped me feel comfortable about my course of treatment.
I didn't make any treatment decisions quickly. I tend to make decisions out of my head versus out of my gut. But engagement doesn't always take the same form. By contrast, I advocated for a friend after his cancer diagnosis who had sought me out specifically because he knew he tends to make emotional decisions.
THOMAS: It makes a difference to the patient themselves, of course, and to those who care about them... 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 the specific perspective. 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."
YOUNG: To the patients themselves, engagement or participation might mean that they had some measure of control regarding the choices available to them. To the extent that our engagement improves health, everyone – other stakeholders included – hopes that will lead to improved outcomes and lower cost. But I'm skeptical. There isn't always a linear relationship between engagement and outcomes.
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 about the "10 benefits of walking to prevent disease." That's what sociologists call an avoidance goal. I tweeted back – "Why not say: 'Walk so you'll feel good!'?" That's called an approach goal – found to be more attainable than avoidance goals. These issues are framed wrong; the last thing most of us want is to think that we have to take this action to avoid disease, but we all want to have more fun and feel better.
Also, look at Dr. Victor Montori's work at Mayo Clinic on what he calls "the burden of treatment," a key concept in the field of minimally disruptive medicine. This is an alternative to the current approach of evidence-based medicine (like relentless treating to numbers) that is pervasive in medicine. Treating to numbers isn't always evidence-based, however. It may seem counterintuitive, but intermediate endpoints (targeting lower numbers) are not necessarily connected to better health outcomes, as December's  controversial new cholesterol guidelines revealed. Maybe we will be more engaged in our health care when our symptoms are addressed and when our actions mean that burdensome symptoms become less overwhelming and that burden of treatment is eased.
YOUNG: Access to information, access to their data. There's a prevailing attitude on the side of clinicians that looking for and using this information is not good behavior on our parts. I think that attitude is a big barrier; people don't want to be seen as troublemakers for asking too many questions, disagreeing with a clinician, or bringing information to the table.
CFAH: What are some interventions that you've heard of that show promise in helping people to engage in their health and health care?
DEBRONKART: ...The low-hanging fruit for engagement with a patient's chart is to ask people to proofread their records. In my speeches, I sometimes ask how many in the audience (always less than ten percent) have examined their own records to see if they're correct. Consistently, two thirds of those who've checked have found mistakes: missing allergies, conditions they never had, important typos. My own mom's hyperthyroid showed up as hypo – a mistake that could have been deadly! Asking people to check their chart before any crisis hits can get people familiar with the content in a low-pressure setting.
YOUNG: There are a ton of apps for RA, and I haven't seen any one of them take off. I've worked on some of them myself. The challenge is going to be finding something that works, that patients will do, and that doctors will look at. The intervention has to reflect meaningful disease activity on our part that is of interest to our doctors.
Full interviews and the results of our study are available in our report: Here to Stay: What Health Care Leaders Say About Patient Engagement.