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Different Chronic Illnesses Demand Different Connected Health Strategies

May 18, 2015

In the seven or so years I’ve been blogging, I’ve only written a few posts that prompted controversy in the comments section. Looking back, I notice that these posts have involved chronic illness management, motivation, adherence and/or engagement. In fact, a commentator recently felt my writing was that of an old-fashioned doctor who believes that paternalistic messaging is key to engaging patients in an effort to improve their health. I’m paraphrasing but you can read the post and commentary here for more context. This spirit prompted me to reflect on my writing and intent. I believe sincerely that our work at Partners Connected Health is patient-centered in every way, so why the disconnect?

One possibility is that when I write about chronic illness, I am largely focusing on those conditions that are silent in nature (e.g., hypertension, diabetes, high cholesterol, obesity). We made a decision some years ago to build the case for connected health around the management of these illnesses because:

  1. They are costly. By some estimates these chronic diseases account for 70% of U.S. health care costs.
  2. They have a significant lifestyle component. This backdrop seems an ideal canvas for connected health interventions because they involve motivational psychology, self-tracking and engagement with health messages. These chronic illnesses pose a unique challenge in that the lifestyle choices that accelerate them are for the most part pleasurable (another piece of cheese cake? spending Sunday afternoon on the couch watching football, smoking more cigarettes and drinking more beer.) In contrast, the reward for healthy behavior is abstract and distant (a few more minutes of life sometime down the road or an avoided heart attack or stroke). This combination of lack of symptoms and the uphill battle around lifestyle improvement makes these illnesses uniquely challenging.
  3. They are mostly amenable to tracking some objective bit of information about you (e.g. your blood pressure, blood glucose or activity level) in order to make you more aware and, hopefully improve your lifestyle in order to improve your health.

20100811 - Wednesday, August 11, 2010, Fairhaven, MA, USA – LIGHTCHASER PHOTOGRAPHY – Images of a Mass General Hospital diabetes patient in his own home using an advanced home monitoring system for the Partners HealthCare Center for Connected Health's 2010 Progress Report, Forward Currents.   ( lightchaser photography 2010 © image by j. kiely jr. )

Focused on these illnesses and the attendant challenges, we developed programs for home blood pressure monitoring, home glucose monitoring and various activity challenges (nothing on cholesterol just yet). By iteration, trial and error, we’ve become comfortable with the psychology around these illnesses and how it affects both our ability to manage patients and the patient’s ability to improve these conditions.

Because these conditions are silent and because most people would rather not be reminded that they have an illness, we found that a strong engagement platform is needed to get people’s attention. We also found that we need to create tools that nudge people to adopt and sustain a healthy lifestyle rather than ignore our natural tendencies to ignore these silent conditions and engage in unhealthy behaviors.

Blood pressure Remote Monitoring_Kvedar_Partners Connected Health

Over the years, this has led me to make some (apparently) controversial statements, such as: “We can’t just give people what they want.” This bold statement was made in the context of this conundrum of the tendency to ignore silent illness and engage in unhealthy lifestyle choices. I was also putting this in the context of mobile app development, where people seem to conflate the success of apps like WhatsApp and Snapchat with the potential success of mobile health apps. Once a commentator called me out on this. I see how it appears arrogant taken out of that context. The challenge remains however, that with our libertarian culture in the U.S. and minimal individual accountability for either health care costs or preventative health, we need some sort of tools to get folks to engage in healthier lifestyle choices. It’s a societal imperative if we’re going to tackle these chronic illnesses that account for 70% of health care costs.

If we don’t intervene, I think we all agree that the incidence of diabetes and other chronic, expensive illnesses will bankrupt our country in the coming years.

Interestingly, many of the commentators who have challenged me on this language have been folks with chronic illnesses but of a different type – the type that are debilitating because of symptoms. Whether it be chronic migraine, fibromyalgia, arthritis, inflammatory bowel disease or any other debilitating illness, they pose a very different set of challenges:

  1. The associated symptoms make sufferers aware of their condition, all day every day. No tracking required at least as a tool to raise awareness.
  2. Lifestyle alterations usually have minimal effect on improving these illnesses.
  3. The individual’s motivation to get better is usually not in question.

With that context, it’s easy to conclude that these illnesses are quite different and that connected health tools to help address them require a different set of design principles.

I can also see where sufferers of this set of illnesses might have been offended at some of my comments in past blogs. For this misunderstanding, I apologize.Cancer_Pain_Management_Center_for_Connected_Health

But here’s the good news. Our research team recently built and tested, in collaboration with the palliative care group at Massachusetts General Hospital (MGH), an app to help patients manage chronic pain associated with cancer. We are just crunching the numbers now, so I don’t have much concrete detail to share, but I can say that the study enrollees found it engaging and helpful and their need for interaction with their doctor’s staff went down precipitously.

We’re on our way to thinking about how to support folks with debilitating, symptomatic chronic illness. Here’s hoping we can help. As much of a challenge it is to steer folks with silent ‘killers’ to improved lifestyle choices, it may be a bigger challenge to help those with chronic symptomatic debilitating illnesses to feel better.

16 Comments leave one →
  1. May 18, 2015 4:49 pm

    Thank you for your insight. As a public health professional, whose spent over fifteen years working with people who have and are at risk for STDs/HIV and Hepatitis, I indeed see you perspective. This is especially true dealing with health issues that are a result of/ or impacted by our behaviors. The same rules apply. when someone’s behavior results in instant gratification and is pleasurable, how do we get them to want to change? Add the addiction factor in there, and we really have an uphill battle. When something feels good, it is human nature to want to keep doing it, despite the eventual outcome. Until the negative consequences of a person’s behavior outweigh the positive effects felt from it, then change is impractical/improbable. That is why so many people don’t find the ability to change until after they have suffered a severe health episode. Just my experiences, thought I would share.

    • May 18, 2015 7:50 pm

      I was hoping you’d have the answer 🙂 Seriously, I appreciate your insights.

  2. May 18, 2015 6:02 pm

    I might have been one of those dissonant voices!

    My suggestion was to replace a goals-oriented approach for a process-oriented, acceptable choices model.

    So in the case of your beer drinking, cigarette smoking, Patriots fan, instead of damning those unhealthy behaviors, why not reframe them with acceptable co-behaviors, such as smoking while taking a walk. Or drinking beer while eating carrot sticks. And maybe cheering for a different team (but that’s another conversation).

    For me, “driving to the gym” became an acceptable daily activity that you did not agree with. But at the time, I could barely get out of the car due to pain. By allowing “drive to the gym” as an acceptable activity, I kept the gym in my line of sight and eventually made it in.

    Compassion, creativity, and a dose of practical thinking go a long way to creating behavior change. From this app developer’s perspective, patient-led design helps.

    • May 18, 2015 7:52 pm

      very helpful perspective. I’m glad to hear from you. I confess I have trouble endorsing smoking while walking, but I get it. Your personal example of driving to the gym hits home.

  3. Janice Flahiff permalink
    May 20, 2015 6:10 am

    Reblogged this on Health and Medical News and Resources.

  4. whynobodybelievesthenumbers permalink
    May 28, 2015 12:03 pm

    Excellent distinction between patients who need no encouragement due to the debilitating nature of their conditions vs. patients who have to be convinced that something “silent” is going to get them.

  5. May 28, 2015 12:29 pm

    Ah, good to see willingness to integrate criticism and come out the other side with a thoughtful expansion of original thinking. Any chance that you would go through the same type of critical thinking about the potential for durable medical equipment (that mitigates functional limitations, i.e., mobility challenges) to serve as a platform for remote patient monitoring re the optimization of functionality. Consider the connection between mortality and disability which informs the work of researchers such as Thomas Gil BMJ 2015; 350 doi: (Published 20 May 2015)
    Cite this as: BMJ 2015;350:h2361

  6. May 28, 2015 12:34 pm

    I don’t feel like enough of an expert in the DME business to take a shot at it.

  7. May 28, 2015 12:51 pm

    Is your group working towards laying out a behavior change model that has emerged from your practical work in helping patients with chronic diseases with remote home monitoring (RHN) and telehealth ? We at betweeMD (a chronic disease solutions start up in CT) are modifying Social Cognitive Theory (SCT) and use the Chronic Care Model to provide the theoreticl frameworks for our mobile and RHM solutions I wondered how your group looks at existing behavior change models from the vantage point of real world program development in RHM. I have come to your Connected Health meeting in prior years but haven’t seen discussion of behavior change theory as such (maybe it is not relevant) so am curious where you guys are on that.

  8. May 28, 2015 4:10 pm

    You are ahead of the curve. We’re just starting to work on this.

  9. May 28, 2015 10:47 pm

    Reblogged this on bigadata healthcare software solutions kathmandu nepal lava prasad kafle and commented:
    tags: adherence, apps, behavior change, blood pressure, chronic illness, connected health, consumer health, diabetes, engagement, mHealth, remote monitoring @deerwalkinc uknew?

  10. May 31, 2015 2:57 am

    Dear Joe, I’m glad to know that Partners is focusing on those “other” chronic diseases and the patients who stubbornly follow routines that work to help them live a rewarding life. I’m one of them, having lived with MS for 32 years, I swim at my local YMCA and use a stationery bike there, too, now that I don’t have the balance anymore to ride out of doors as I had for dozens of years. People at the Y often ask me as I hobble in on my walker, “Do you HAVE to come every day?” I guess thinking that I should not be so stoic, but instead just relax on the couch for hours or days or something. And I always respond, “Yes I do, I feel terrible when I miss a day, feel great when I don’t.” I’m always looking for exercises, therapies, etc, that will keep me feeling better when I use them. Looking forward to hearing more about (or participating in helping Partners’ staff find out more about) tools/strategies for helping people like me living with those “other” chronic diseases feel the best that they can.

  11. May 31, 2015 11:33 am

    thanks for these thoughtful comments

  12. Jim Hutchinson permalink
    June 2, 2015 1:53 pm

    This large group of citizens are also all individuals, so no one program will be the “Golden One.” As a society we are exploring new ways to care for and engage chronic illness. Let’s not fence our trials and errors into ridged compartments.


  1. Different Chronic Illnesses Demand Different Connected Health Strategies

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