Healthcare’s Tech Disconnect: Why Aren’t We Building the Products Patients Really Need?

Having been supported by several small business grants from the National Cancer Institute to create online interventions for cancer patients, I have been learning gradually about commercialization models to get our work out to the public. I am dismayed about the major disconnect between eHealth entrepreneurs and eHealth intervention researchers (my personal reference group).

Last year I attended Stanford Medicine X and last week I did a demo of one of our web sites at Health 2.0 in Santa Clara. Both times, I was struck by the assumption in the IT developer and consumer community that giving people realtime feedback about their health will automatically result in major positive changes in behavior, not to mention cost savings for insurers.

The Connected Patient movement seems particularly naïve to me. Psychologists have been using self-monitoring, i.e. recording behaviors such as smoking, eating, and exercise, for at least 30 years to promote behavior change. First we used paper-and-pencil diaries, but researchers like Saul Schiffman quickly adapted the first handheld computers to prompt people to record their behaviors in realtime, greatly increasing the accuracy and power of self-monitoring.

As technology has advanced, so have our means of self-monitoring. Overall, however, the technology matters far less than the procedure itself. For most people, tracking their smoking, calories, mood, or steps does change unhealthy behaviors somewhat, for a limited period of time. A small group of highly educated, motivated people is more successful in using self-monitoring to make larger, more lasting changes.

I was reminded of this last year in a seminar on tracking at Stanford Medicine X, when a concierge physician from San Francisco and several of his patients talked about being empowered to change their health by using feedback from various types of sensors. One had paid out of pocket for a continuous blood glucose monitor since his insurance would not cover the costs to use it for his Type II diabetes.

Another doggedly demanded access to the data from his cardiac defibrillator. They believed their experiences heralded a sea change in health care in the United States. I am all for empowering patients with knowledge, tracking tools, and social support.

However, if knowledge and feedback was all it took to change unhealthy behaviors, psychologists would be superfluous in the world.

As I listened this year to Dr. Peter Diamandis talk about using wireless sensors for fitness (along with his disclosure that he arrived at Health 2.0 on his own personal jet), I thought about the statistic that at least 20% of Americans are functionally illiterate—and of course there is a huge correlation between social class and health. How many people living on food stamps in our inner cities are wearing Fitbits®?

How can we make eHealth effective for a wider group of people? Researchers in eHealth interventions combine self-monitoring with an array of other intervention features, such as tailoring messages specifically to the barriers that are limiting behavior change for an individual patient, incorporating cognitive-behavioral therapy exercises, and experimenting to find the most cost-effective way to supplement a web site or app with automated feedback or human contact in the form of email, phone, videoconferencing, or face-to-face visits.

Our research is not judged by the number of people who “like” an intervention on Facebook, being included in an insurance company’s collection of “vetted” apps, or even the number of people who use a site or app more than once, but by carefully documenting actual health outcomes, such as quitting smoking, weight loss, sleep quality, fitness parameters, or changes on questionnaires measuring depression, anxiety, or even (in my case) sexual function and satisfaction.

We analyze our data to see if recordings of the amount and type of usage of an intervention actually predict whether it works. This is not an easy type of research to do. I was listening to a lecture this morning by Deborah Tate of the University of North Carolina, an expert on using eHealth interventions to treat obesity. She pointed out that in the period of time between submitting a grant and getting it funded, the technology we propose to use often becomes outmoded (especially these days when getting grant funding is increasingly difficult).

However, it is the study design that is crucial, not whether the research is ultimately done using smartphones or Google glasses.

I would love to see more communication between the developers, gamification experts, innovators, and healthcare organizations that attend Health 2.0 and the community of behavioral scientists who present work at meetings such as the Society of Behavioral Medicine (SBM) or the International Society for Research on Internet Interventions (ISRII).

As researchers, we need to learn how to move more nimbly, keep up with changing technical possibilities, and how to scale up our interventions to make them commercially viable. But we also have a body of knowledge that your community needs if we are going to realize the potential of these new technologies to change health.

I am not speaking without personal experience, either. This year I was diagnosed with breast cancer, and after staring for a day or two at Adjuvant Online!, a decision tool that shows the costs and benefits of having chemotherapy for a woman with a hormone-positive tumor, I decided to pass up 6 months of personalized toxic chemicals to achieve a 5% decrease in my risk of cancer recurrence and at least a 2% further increase in my cardiovascular health risk  over the next 10 years.

Instead I am finally tackling the massive amount of weight I gained after having my son at age 40 and returning to work fulltime (he is now 21, so my excuse is long gone). I have lost 40 pounds, use calorie-counting and exercise-recording apps on my iPhone, and wear a fitness tracker.

However, I still need to lose 30 more pounds to get to a truly healthy BMI, and I can feel my resolve flagging. Help! I think I need a psychologist!

Leslie R. Schover, PhD is a professor of behavioral science at the UT MD Anderson Cancer Center.

8 replies »

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  2. Glad to hear from Anna that she found a way to make a difference as a behavioral consultant to an eHealth startup. I think ultimately we will make more of a difference if we can prove that evidence-based programs are better at improving actual patient outcomes and also cutting medical costs. As Matthew says, doing that research is daunting. Whatever you think you can promise, you almost always recruit fewer subjects, have more dropouts, and find that your results bring up new questions–but I think we have to keep trying. I have found that small business grants have supported our innovative, but less theoretically-based projects more often than traditional research grant funding, but that still leaves a funding gap between having a beta-tested product and scaling up for commercialization. I thank Matthew for considering my request to create some type of forum to make it easier for behavioral scientists and the tech and insurance crowds to communicate at future Health 2.0’s, and also for the compliment on our hardtimes web site (which actually is for men with sexual problems after any type of cancer, not just prostate). BTW, I should have said in my original post, and will officially state now, that views I express here are my own and do not reflect the views of UT MD Anderson Cancer Center.

  3. Leslie–first compliments on a fabulous demo of a very valuable resource (Hard Times website for men & their partners post prostate cancer).

    Second, I am not surprised you think that not all of the tools on display will work. This is screamingly difficult. Behavior change is difficult. Designing for multiple different types of users is difficult. Researching tech that changes so fast is difficult. Figuring out how to give out government grants is difficult–even when the government is officially working! Runnin a tech company and getting your product out the door is difficult. Creating a government marketplace for insurance is….well you get my drift

    But there is lots of interest in the behavior change information amongst the tech crowd, both from within players like Cigna and also among those (for instance) who go to BJ Fogg’s lab and pay his consulting fees.

    We’d love to have more of that type of at Health 2.0 and hopefully we will, if we can find time to cram it all in!

  4. EXACTLY, Dr. Schover. Although the buzz about portable diagnostics and monitoring devices is interesting, my question has been, “Why aren’t we putting this energy and money into helping people change their behavior and PREVENT the need for a blood glucose monitor or cardiac defibrillator?” As a health promotion specialist, I have spent my career trying to help people on that front. However, as one person, I’ve only been able to influence a small number of people at a time. Then, after surviving breast cancer myself, I was looking for a way to get back to work and maximize my impact in helping people live better. I wanted to be able to make a bigger difference, especially for cancer survivors like me who struggle(d) to return to “normal” after diagnosis and/or treatment. Then I found a health technology startup looking for a behavioral health consultant for MealLogger. (BTW, this isn’t intended as a product plug but rather as an example of just what you are discussing above.)

    MealLogger is an dietary behavior change tool that addresses precisely the needs you mentioned. It combines an easy and fun way to self-monitor one’s eating behavior with messages tailored “specifically to the barriers that are limiting behavior change for an individual patient” as well as social support/”human contact” to support the changes in the form of exchanges through the smartphone app or website. We’re working on “incorporating cognitive-behavioral therapy exercises,” too. We’ve done many pilot studies (such as this one with breast cancer survivors: sco.lt/5sURHd) but are having difficulty getting funding for larger scale research. Although we believe this is the way to scale up a behavior change interventions, preventive eHealth still isn’t considered as “sexy” as curative medicine technologies…

    We were at Health 2.0, but there was more buzz about the gadgets. Patient engagement and advocacy organizations were thrilled with MealLogger for better addressing their constituencies’ needs, but how can we turn the tide to get funders and healthcare organizations to take note of what patients really need?

  5. Glad to get such positive feedback. I think it would be ideal if some of the commercial companies added in-house experts in behavioral outcome research, especially in this time of dwindling research support from governmental agencies and advocacy groups. The percentage of NIH research, for example, that focuses on behavioral issues is very small. The last statistic I could find is that in 2002, behavioral and social sciences made up about 10% of the NIH research budget, and that included basic, as well as applied research. I do not think the percentage has increased much, if at all. Furthermore, the peer review system for grants moves like a brontosaurus (I use that name rather than the more modern apatosaurus on purpose!). Reviewers are far more likely to reward incremental designs that take 3 to 5 years to elegantly test each component of a complex intervention than to fund disruptive innovations in eHealth. Commercial companies can move far faster, but my impression at Health 2.0, for example in the Deep Dive for the new “Go You” Cigna Marketplace, is that marketing executives are in charge and behavioral scientists are at best, consultants. Outcome research is deferred for “Phase III” after the health apps to be included are chosen on the basis of “Likes.” It would be so much fun to have the kind of freedom to innovate that I see among the developers and entrepeneurs in these conferences, while contributing expertise in how to change behavior to the team’s skills in computer engineering, design, and usability.

    If you really want to change healthcare spending, what about tackling the 80% to 90% of primary care physician visits that are actually for stress-related conditions? The mental health care that often would be cheaper and more effective is stigmatized, not covered by insurance, and limited by a lack of well-trained, available professionals. This is a clear niche for eHealth, as the low intensity cognitive-behavioral programs in the UK, Australia, and the Netherlands have shown.

    Another statistic is that 50% of cancers could be prevented by behavioral changes, including smoking cessation, staying at a healthy weight through better diet and exercise habits, and avoiding sun exposure. But as Kevin notes, we put our research resources into genomics and drug design.

  6. Have to agree with Dr. Schover and had similar feelings while at the recent digital health conferences.

    The tech tools are nifty, but there is a long way to go before they materially improve healthcare and health outcomes for large groups of regular Americans.

  7. Important post.
    The subject matter doesn’t get enough attention. But maybe that’s about to change.

    We know research in the field of medicine has been dominated/driven by hard science, pharma studies, etc. That’s where the status and money has been, and understandably and acceptably so.

    It’ll be a long while (never?) before consumer behavior research in the context of medicine gets equal stature with the hard sciences.

    That said, consumer behavior here is clearly exploding in importance, relevance, and attention — this represents great new opportunities for new leaders in thought and application.

    And, yes, I am working hard to be one of them 🙂

  8. Excellent post. Sending to my entrepreneur friends. Much food for thought here.