Participation Paradox

If you look at things people say they value, health is usually near the top of the list. For example, good health and well-being are #3 on the UN’s sustainable development goals for 2030.

Being that research is how knowledge is created about the make-up of human bodies, why illness strikes some people but not others, and what keeps us healthy, then why don’t more people participate?

I have not been able to find solid numbers for the annual rates of participation in organized health research, but I do have several years of anecdotal evidence that participation is very, very low. I mean, how many studies are YOU signed-up for right now?

For several years, I’ve made it a habit to ask audiences before giving a talk at biomedical conferences to raise a hand if they are currently enrolled in at least one organized health research study. You might think that these crowds would be enriched for people who are likely to participate, since their lives are already intertwined with health and biomedical contexts. To my continued surprise, the response is almost always tumbleweed. Only a couple hands go up (with the GET Conference as a clear outlier).

I recently started asking a second question: how many of you have on your body a wearable device or health-tracking app on your phone? Most of the hands usually go up in the air these days. There are some other positive signs that we may be on the cusp of a transformation in participation rates for some forms of research, aided by new mobile technologies like Apple’s ResearchKit which can untether research from academic medical centers and reach far more people. The Parkinson’s mPower app was able to break records by enrolling more than 7000 people in the first 6 hours. At the time, the largest parkinson’s study was 1/3 that size.

While current participation rates in research are bleak, it’s ripe for change.

Written on January 23, 2016