HAS PATIENT ENGAGEMENT STALLED?

By Jessie Gruman

April 2, 2014

A few discouraging reports on patient engagement have skittered across my desk in the past few weeks.

One, from an online national survey by Deloitte on people’s engagement in their health care, finds that the number of us who participate actively in our care has declined – and not just a smidgen – over the past four years. This, despite a considerable investment of resources and changes in policies and practices specifically focused on producing the opposite result.

In a report from the Pew Research Center’s Internet and American Life Project, we see disappointing rates of Internet use by older people: 54 percent and holding steady, as compared to 80 percent of the rest of the adult population. Without online access and skills, seniors lose out on opportunities for social connections and they have no access to useful logistical and substantive information about health care that increasingly is found only there.

A study published in The Forum for Economics and Policyfound that most people covered by a consumer-directed health plan – the very people who have the greatest incentive to shop carefully for health care services – still don’t do so, even when price information is available.

And a survey that appeared in JAMA Internal Medicine showed that despite widespread reports about the dangers of overuse of various tests, the vast majority of people still believe that their doctor wouldn’t have ordered a CT scan if it weren’t appropriate and safe for them. Thus, they see no need to question that recommendation.

What’s going on? Why are so many of us so slow to engage in our care when it is increasingly clear that we will do better if we participate more fully?

My guess is that most of us are healthy most of the time and so are unaware of the magnitude of the changes in health care and the corresponding shifts in demands on us. As long as our usual approach to getting health care (used a couple times a year for the flu or a rash) seems to do the trick, why change?

Ah, but the media is full of warnings: Advice for health care consumers! Advertisements for drugs and technologies and health plans and hospitals! Reports of bogus research, tainted drugs, crooked hospitals! Why do we ignore the news that health care can be dangerous and that only through our careful attention can we make sure it helps and doesn’t harm us and those we love?

I have asked many people whether they think they need to become more active participants in their care. One of the shortest answers came from my own father, who was then 86. Paralyzed, on dialysis, with a pacemaker and assorted other serious chronic conditions, he sits in his chair all day glued to his iPad as though it is a window to the universe, emailing, blogging, reading, listening to music.

“Dad, do you ever read the health section of the news sites you visit or in your newspaper?”

“Nope. That’s for sick people.”

My father’s illnesses and disabilities inconvenience him. They slow him down and make him uncomfortable, but they don’t define him, nor do they interest him. Rather, new ideas, friends, the wonders of the Internet and music feed his spirit and distract him from the physical pain that shapes his days.

My father is not alone in making this choice. For many of us, taking on the tasks of participating in our care adds responsibilities and work to our already full days.

• We have to learn new facts (and face the extent of our ignorance).
• We have to assert our preferences and reveal our confusion (and risk disapproval by our clinicians).
• We have to make choices about plans, doctors and services on the basis of information that, when available and findable, often seems irrelevant to our personal questions.
• We have to deny ourselves food that comforts us and devote time to exercise that is uncomfortable.
• And we will do much of this work when we are feeling ill on the chance that maybe, in the long run, we’ll feel better.

Taking all of this into account, I guess we should be amazed that the percentage of people who report being actively engaged in their care is as high as it is.

When I go to professional conferences and participate in Tweet chats and webcasts and am surrounded by patient engagement enthusiasts, I get excited about the potential of our increased participation to make a difference in how we can make better use of health care. There are so many great ideas and programs, so many clinicians and health professionals who are working hard to persuade us that our participation is important and that it is possible that we can do this for ourselves and our families! I emerge from those experiences feeling like we are on the cusp of real change.

Then I talk to people who live outside this magic circle of enthusiasm and optimism, and I hear how distant and irrelevant health care is to their daily lives, even when those lives are limited by illness and suffering. And while not everyone has this perspective, many do, even those who report being capable participants in their health care.

The shift from passive to active patients that many professionals envision and work for is probably far more complicated than we anticipate. Each advocate focuses on their individual piece of patient participation in the belief that if only everyone would make good use of their patient portal (or share decisions about preference-sensitive treatments with their doctor, or seek out tools that compare the quality and price of different health plans, or use an app on their phone to monitor their blood sugar, or read and understand every relevant piece of information) – if all of us did any one of these things, the full benefits of patient engagement would accrue.

Not true. Each of these is an approach that makes possible a different aspect of effective participation. Efforts to implement each approach, to perfect it, to pay for it and to integrate it into clinical routines and community norms are worthwhile.

I suspect that most of the people for whom knowledgeable participation is a rational and feasible response to today’s health care are already pretty engaged. Most of the rest of us will eventually discover that it is both important and possible to participate more fully as the messages become more consistent and the barriers become less formidable. But the reason we will engage is not to save the system money or to make care safer or more efficient in one hospital. We will do it when we or someone we love faces a risk that frightens us or a condition that causes us to suffer. We will engage when a problem arises and we are welcomed by our clinicians to work with them to help solve it.

Over time, the work being done now to pave the way for all of us to engage in our care will make possible the individually unique shift from passivity to different levels of activity. And those actions will enable each of us to maintain our lives, not as sick people or as experts on health care, but as spouses, parents, grandparents and friends who make use of the tools of health care as one part of our varied and diverse lifelong efforts to live as well and as long as we can.

Original blog post by Jessie Gruman. Updated by the GW Cancer Institute June 2016.