CONNECTED HEALTH CONFERENCE • SAVE THE DATE • October 16-18, 2019 • Boston, MA
Dara Richardson-Heron, M.D., Chief Engagement Officer of the All of Us Research Program reflects on her presentation at the 2018 Connected Health Conference and the future of precision medicine.
As a physician, advocate, and breast cancer survivor who has seen the health care and research landscape from many different angles, I understand the potential harm that may result from current limits on medical diagnoses and precision treatment tailored to each of us as unique individuals.
Although health care providers are working very hard to get and keep everyone healthy, we don’t always have the data we need to make tailored recommendations for patients. This is in part due to past research which focused on just a narrow segment of the population and historic transgressions leading to understandable hesitancy for certain segments of the population to participate. The result is that despite providers’ tremendous skill and good intentions, we are often left with “one-size-fits-all” health care, with many diagnoses and treatments determined by trial and error. Unfortunately, this approach may lead to unnecessary suffering for patients, increased health care costs and inefficiencies in the clinical system overall.
Researchers face challenges of their own in building longitudinal cohorts large and diverse enough to provide meaningful data for all populations. The work requires time, resources, and infrastructure that few investigators can afford.
That’s what the All of Us Research Program hopes to change. Spearheaded by the National Institutes of Health, All of Us aims to accelerate health research and medical breakthroughs, enabling individualized prevention, treatment, and care for all of us.
We’re working to do this by engaging 1 million or more volunteers across the United States willing to share their health information for research. Together we will build one of the largest and most diverse biomedical data sets in the world to bring the promise of precision medicine to life. Our hope is that the data we gather will allow researchers to determine how we can stay healthy longer, to find health conditions early when they are often most treatable, to better understand why individuals respond differently to various medications and treatments, and also to develop more effective, personalized, and precise treatments that are uniquely based on our personal characteristics.
In addition to our scale and scope, one of the many things that sets our program apart is our commitment to partnering with participants from all backgrounds and walks of life, particularly communities that have been historically underrepresented in research. This includes racial and ethnic minorities, who make up over a third of the U.S. population but less than a tenth of clinical trial participants. And it includes other groups, too—sexual and gender minorities, residents of rural areas, senior citizens, those with low income or low educational attainment, those with disabilities, and those with limited access to care. Ultimately, we aim to form a cohort that’s diverse in all respects—sociodemographically, medically, and geographically—so the research we support benefits all.
Not only does All of Us want diversity in terms of the participants who enroll, but also in terms of the researchers who will use the data. With appropriate safeguards to protect privacy and security, investigators in academia and industry, educators and students, and citizen scientists all will be able to request access to the All of Us data platform to leverage their expertise and contribute to common goals — advancing discoveries and improving health.