JThe growing adoption of wearable devices has excited health researchers, and for good reason. Data generated by fitness and activity trackers offers an exciting new stream of metrics – physical activity, sleep, heart rate, and more. – that can help researchers better understand the unique health needs of specific populations.
But the promise of portable data comes with a familiar pitfall. The use of portable devices is currently concentrated among young, white, college-educated, and high-income users, which could compound the problem of underrepresentation in research without intentional work toward equitable access and use of digital health technologies.
The lack of diversity among those involved in medical research has created knowledge gaps and fueled disparities in health outcomes. For example, hospitalizations and deaths in children with asthma vary greatly by race and ethnicity. By including racial and ethnic minority children in their broad whole genome sequencing study on drug responses in children, researchers at the University of California, San Francisco have identified an important clue to these disparities: a genetic variation that may make albuterol, a common asthma treatment, less effective in children. black and Puerto Rican children than in children of European or Mexican descent.
Putting portable data to the test
National Institutes of Health Research program on all of us, in which we participate, has worked to help fill long-standing research gaps by creating a health research resource that reflects the diversity of the United States. Approximately 80% of program participants come from communities historically underrepresented in medical research, including approximately 50% of participants who identify as a racial or ethnic minority. These communities are often excluded from biomedical research. For example, more than 90% of attendees in genome-wide association studies to date have been of European origin.
Recognizing the value of real-time data derived from wearable devices, especially when combined with the growing repository of genomic data, electronic health records and participant-reported data, All of Us enabled participants in the program to provide data from their own wearable devices — starting with Fitbit devices — starting in 2018. The program secure data analysis platform includes recordings that have been stripped of personally identifiable information, for portable data provided by more than 11,600 participants. Wearable data is linked to each participant’s survey responses, electronic health record information, and physical measurements, representing one of the largest and most diverse digital health technology datasets. available to the public today.
Given the demographics of wearable technology users, All of Us recognized early on in collecting this information that it likely would not align with the program’s diversity goals. When our team compared the demographics of all program participants to those of Fitbit data contributors, we found that representation from historically underrepresented communities decreased.
To understand the barriers, All of Us turned to a critical link in the program’s efforts to reach diverse participants: federally licensed health center the partners. These are community health care organizations that provide primary care in underserved areas. They play a crucial role in the success and progression of All of Us, particularly by engaging communities that have historically been underrepresented in medical research.
Six of these centers interviewed 1,000 people from communities historically underrepresented in medical research. Like us and our colleagues describe in the journal npj Digital Medicine, respondents interested in using an activity tracker made it clear that their lack of use was not because they were unwilling to use devices or provide the data. search results. They cited financial barriers (49%), needing help using the devices (19%) and a lack of clear understanding of the potential value of these devices to their health (16%).
Reduce the access gap
The results of this survey indicate opportunities to overcome this challenge and, as past efforts have shown, underrepresented communities are not out of reach. All of Us is currently piloting an effort to distribute portable devices to examine ways to increase usage among attendees and to educate, engage, and encourage attendees to use these devices regularly. As of this writing, approximately 3,000 participants in the All of Us research program are sharing data from devices provided by the program, almost all of which come from communities historically underrepresented in biomedical research.
As digital health technologies become increasingly important sources of data in biomedical research, the research community must redouble its efforts to foster inclusion and equity in the research ecosystem. This requires a sustained commitment to working with community partners and an investment in staff and funding for education, outreach and engagement. Researchers can analyze the data from these efforts to show what is working and what is not, and be ready to pivot, adapt, and act.
In doing so, the research community can fill existing gaps in representation and ensure that new disparities are not created. It is clear that the willingness of participants to adopt wearable technologies is there. Deliberate efforts to create access, opportunities and infrastructure will allow all communities to benefit from the scientific knowledge gained through data from wearable technologies.
Yashoda Sharma served as a Principal Investigator for the National Institutes of Health’s All of Us Research Program at Community Health Center, Inc., a federally qualified health center in Middletown, CT, and is Program Director for the Digital Medicine Society . Chris Lunt is the Chief Technology Officer of All of Us.