by Marie-France, MD
It was fascinating to listen to the study team explain how they built the tools and web site to recruit and engage participants. Rather than a traditional research study, they view the Health eHeart effort as many technology companies think of ‘products’ – not surprising given the ‘valley’ influence (the study’s headquarters are at the University of California, San Francisco, UCSF). The website is user friendly, using nice graphic designs, positive reinforcements when a section is completed, and a complementary App. The study also invites participants to connect their sensor devices to track physical activity (Fitbit, Jawbone, etc.) or home blood pressure, for example. They even allow connections with a FDA-approved phone case that gives a basic electrocardiogram reading.
Individuals without fancy sensors are also invited to join the study and complete questionnaires regarding physical and emotional health when enrolling in the study and every 6 months afterwards. As a researcher, I thought I should do my part. I joined. After experiencing the interface, it was clear to me the team did a very nice job. Most questions are well framed, including thorough sections on physical activity, a passion of mine. It took me less than 45 minutes to complete all sections – not bad.
One of the important issues that the study team addressed was privacy. First, the whole study has been reviewed by the UCSF Institutional Review Board. The consent form that participants have to read and sign electronically is well conceived and understandable. The next challenge will be to link data from participants’ electronic medical records – all within a ‘safe and protected’ data storage and linkage environment. They seem very confident that they will be able to do that and, in turn, answer big questions in the field of prevention and prediction of cardiovascular diseases.
I was intrigued and excited by their effort. Yet, like every study, nothing is perfect. Filling online questionnaire is not equivalent to an in-person medical interview and physical examination like the Framingham Heart Study has been doing every 4 to 8 years for 3 generations of participants since 1948. And yes, individuals that will volunteer and participate on a bi-annual basis are not representative of the global population. However, that is true for any longitudinal study that requires active participation. My opinion is that the Health eHeart study will be able to collect information on individuals that would be unwilling to attend in-person visits. I found their integration of sensors especially compelling, an aspect that might give us a more realistic portrait of ‘real-life’ physical activity patterns and vital sign variation. Yet, I hope that NIH will continue the important work that ‘traditional’ cohorts like the Framingham Heart Study. They collect refined phenotypes that will never be available in an online only format.
When I was a research fellow, I felt that I was contributing to science and scientific history by volunteering at the Framingham Heart Study, conducting standardized medical evaluations and measuring blood pressure in participants using the same mercury sphygmomanometers that have been used for over 60 years. Now maybe I am contributing to a new history by participating in the Health eHeart Study.