Wearable device data should represent all of us

THe promoted the spread of wearable devices and caused enthusiasm among health researchers. There is a good reason for this. Data generated by fitness and activity trackers can provide exciting new metric streams such as physical activity, sleep, and heart rate to help researchers better understand the specific health needs of a particular population. There is sex.

However, the potential for wearable data has some familiar pitfalls.Usage Wearable device Currently focused on young, white, college-educated, high-income users, exacerbating the problem of underestimation in research without a deliberate effort towards equitable access and use of digital health technology. There is a possibility.

The lack of diversity among those who participate in medical research There was a knowledge gap When Fuel disparities in health outcomes..For example, hospitalization and death of children with asthma It depends on race and ethnicity..By including children of racial and ethnic minorities on a large scale Whole genome sequencing research Researchers at the University of California, San Francisco have identified important clues to these disparities in child drug reactions. Albuterol, a common asthma treatment, is a genetic variation that can be less effective in black and Puerto Rican children than in children of European or Mexican descent. ..

advertisement

Test wearable data

National Institute of Health Precision Medicine Initiative Research ProgramWe are involved in addressing long-standing research gaps by building health research resources that reflect the diversity of the United States. Approximately 80% of program participants come from a community that is historically undervalued in medical research. 50% of participants identified as racial or ethnic minority. These communities are often excluded from biomedical research. for example, 90% of participants Previous genome-wide association studies were of European descent.

Recognizing the value of real-time data from wearable devices, especially when combined with an increasing repository of genomics, electronic medical records, and data reported by participants, All of Us allows program participants to data from their wearable devices. I made it possible to provide. Fitbit devices — from 2018.Of the program Secure data analysis platform Includes records with personally identifiable information removed from wearable 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 set of digital health technology data ever published. I am.

advertisement

Given the wearable technology user demographics, we all knew early on in collecting this information that it might not be in line with the program’s diversity goals. When our team compared the demographics of all program participants with Fitbit data providers, we found that the historically underrated representation of the community was reduced.

To understand the barriers, we all turned to key links in the program’s efforts to reach diverse participants. Federally qualified health center partner. These are community-based healthcare organizations that provide primary care in poorly serviced areas. They play an important role in the success and progress of all of us, especially in our involvement with historically undervalued communities in medical research.

Six of these centers surveyed 1,000 people in a community that was historically undervalued in medical research.As a colleague with us Journal npj Explain in Digital MedicineRespondents interested in using Activity Monitor have made it clear. It’s not that it wasn’t used because it didn’t want to use the device or provide the resulting data for investigation. They cited cost barriers (49%), the need for support in the use of devices (19%), and a lack of clear understanding of the potential value of these devices for health (16%). ..

Closed access gap

The results of this study show an opportunity to overcome this challenge, and as past efforts have shown, underrated communities are not out of reach. Currently, we are all exploring ways to distribute wearable devices to increase their use, and are piloting efforts to educate, engage, and encourage participants to use these devices on a regular basis. .. As we write this, all approximately 3,000 US research program participants share data from the program-provided devices. Almost all of them come from a community that is historically undervalued in biomedical research.

As digital health technology becomes an increasingly important data source in biomedical research, the research community needs to double its efforts towards inclusion and fairness throughout the research ecosystem. This requires ongoing efforts to work with community partners and funding for staff investment, education, awareness and engagement. Researchers can analyze the data generated from such efforts to show what succeeded and what failed, and be ready to take pivots, adaptations, and actions.

By doing so, the research community can overcome existing gaps in expression and prevent new disparities from being created. It is clear that participants are willing to adopt wearable technology. With access, opportunities, and deliberate efforts to build infrastructure, all communities can benefit from the scientific knowledge gained through wearable technology data.

Yashoda Sharma is a Principal Investigator for the All of Us Research Program at the National Institutes of Health and Program Director for the Digital Medicine Society at Community Health Center, Inc., a federal qualified health center in Middletown, Connecticut. .. Chris Lunt is Chief Technology Officer of All of Us.