Patients should be less engaged, not more

[grow_thumb image=”” thumb_width=”150″ /]What, the very premise of ‘increasing consumer engagement’ doesn’t work? Whatever will all the (startups, websites, gamification, personalized health, behavior modification, Quantified Selfing) do?

What the chronically ill really want is less engagement with, less time spent on their particular condition or disease–certainly not to be forced into Sisyphean tasks. What this Editor has termed the ‘perpetual Battle of Stalingrad’ of self-monitoring (especially apparent in diabetes) means extra effort with minimal/no reward, never achieving ‘normal’ and never catching a break. Glen Tullman, former CEO of Allscripts and currently a healthcare investor with 7WireVentures, points out that the endless promotion of ‘consumer engagement’ is not only patronizing, but also wrong-headed in blaming the patient for not managing their illness their way. People want simply to live their lives, not their problems.

  • “What if we ask patients—or “health consumers” as I call them—to do less rather than more?”
  • “They want technology and information that will allow them to do that, not saddle them with more tasks. They don’t want help—they want solutions.”
  • “…technology, perfectly applied, is indistinguishable from magic. This is where health care entrepreneurs and executives should be focused: on providing tools and information that allow patients get on with the parts of their lives that don’t involve being sick.”

Last week’s shutdown of Aetna’s CarePass and the ‘object lessons’ of digital health flops such as Healthrageous, HealthRally and Zeo [TTA 29 July] confirms Mr Tullman’s point. In addition, the issue is similar to medication compliance–where it’s sometimes too much for that person to handle. Instead of figuring out why, it’s the patient’s fault. [TTA 18 June 2013]. Stop blaming the patient (or the well person) first. We should be finding better, less burdensome ways to work with them and help them get their job done! Let’s Stop Trying to Force Consumers to ‘Engage’ With Their Health Care (Forbes) Hat tip to Ellen Fink-Samnick of LinkedIn’s ‘Ellen’s Ethical Lens’. 

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  1. David Albert, MD

    This is a complete crock! Donna, you and Glenn should know better. Engaging patients in their care– let me see- for T1DM, taking blood sugars regularly, adjusting insulin and diet, exercising– they can ignore those things and die (always the cheapest option). I don’t blame patients but, in reality, we all must take personal responsibility for our situation (obese, smoking, chronic illness) and “own it”. Obesity is a US epidemic and we can blame fast food or advertising or bad parenting or we can deal with it and help people lose weight.
    If wearing a pedometer gets people moving more, it’s not patronizing. BTW, embarrassment is about as good a motivator as feeling better. As my friend Eric Topol says, “The age of paternalistic (non-participatory) medicine is coming to an end.” Why? Because the patients can help themselves by understanding and helping their management.

    • Donna Cusano

      David, I’m surprised at your comment. If anything with AliveCor, you made taking an ECG (and now cleared for Afib) far less effort. Your predecessors required users to put on sensors and leads, plug in somewhere (POTS, mobile phone), dial in and talk to a doctor–never seeing the result. You took steps, time and complexity out of the process while being accurate. Less work, not more, and more transparent.

      I agree with Mr Tullman’s key points. I’ve been consistent in advocating less burdensome health monitoring, far easier to use and stay with, as well as much more comprehensible–much like the trajectory of smartphones (with much credit to the iPhone.) It’s minimizing the work and time involved, for starters–and not just hanging carrots (incentives) out there.

      The lack of wider adoption (see the Parks study), the quick drops on the health apps, and the complaints about devices like Fitbit and Jawbone being fragile and inaccurate are telling us something. Healthcare is playing on a new field–consumer behavior. In marketing (and sales) when your customer doesn’t buy (or continue to buy) your product, he and she are telling you something. It’s up to us to find out what those ‘somethings’ are, not to reflexively say ‘bad customer’. (30 years of marketing did drum that into my head.)

      Putting on my marketing glasses, those ‘somethings’ appear to be gathering around two poles–complexity (too much work, you can’t get it to fit into your life) and ‘the guilts’–feeling stupid or blamed if you don’t get it right. And look at all the mindsets we are dealing with! I’m sure there’s more. We badly need qualitative research in this area.

      Just because it’s healthcare and even their survival, that person’s ‘better angels’ and personal responsibility don’t predictably, suddenly emerge. To assume they magically do is an assumption you’d never make in normal marketing, and in this context are fun house glasses that distort our vision.

      How do you get people to ‘own it’ and deal with it? When it is not much of a diversion from the rest of their life, they feel some mastery, some gain and (heavens!) they can feel proud of doing so!

      Oh, did I forget?–secure information without fear that it will be hacked or shared without permission.

      • David Albert, MD


        Your response is different than your post. Patients want a pill that they take once and they’re cured but all of our “lifestyle maladies” (obesity, metabolic syndrome, COPD) are the result of one’s LIFESTYLE. Simple pills prescribed by Marcus Welby fit into our fast-food, instant gratification culture but they will not come close to dealing with the lifestyle changes that are needed to really fight these conditions.

        As we are in the infancy of the Quantified and Engaged patient era, the tools are immature but the basic idea is correct. You are right when you say that people just want to live their lives and not deal with their illness but ignorance is NOT BLISS when it comes to illness. Seniors are used to the Marcus Welby, Doctors Know Best way of dealing with disease but it doesn’t do a very good job and it is VERY EXPENSIVE.

        Diabetics don’t want to prick their fingers multiple times per day or watch closely what they eat or give themselves shots multiple times per day but as I said, they get “engaged” or suffer the consequences. Cardiovascular disease and arthritis are other problems where engagement (not to be confused with obsession) can make a huge difference. Watching what one eats and staying (or getting) active should be personal choices. Life is a series of choices and memories — I just want patients to make good choices and maximize their great memories.

  2. Donna Cusano

    David, ah yes we’d all like a magic pill! However, lacking that pill, let’s shoot for ‘less, not the overwhelming more’ when it comes to self-monitoring health.

    My point (and I believe Mr Tullman’s) is to strive to eliminate complexity and focus on simplicity–playing off on what motivates people, helping them fit these changes in monitoring and lifestyle into their everyday routine. Let’s admit also that not everyone is going to get with the game. Motivation is immensely complicated with age and cultural differences, to name just two.

    The fact that diabetes is so widespread and so poorly managed in some has created change–we’re finally seeing movement in making personal monitoring and that needle stick less intrusive (and painful)–and there’s research on developing systems that replicate an artificial pancreas.( because for some patients even perfect management will never be enough over time.

    Many older people are at a disadvantage in understanding and transitioning to self-management (everything from culture to mild cognitive impairment), but their hidden asset is that they may readily accept authority and in many cases, are motivated by contact and social factors to comply. Here’s a role for the nurse-practitioner or a trained home health nurse or specialist, or seniors groups.

    We are also spending a lot of time, money and energy in complicated ‘consumer engagement’ programs in companies which focus on already well people.