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NIH Searching for Volunteers Nationwide to Contribute EHR Data

NIH hopes to soon enlist over 1 million diverse All of Us participants to share EHR data and survey information with researchers.

NIH All of Us launches open enrollment for participants to contribute EHR data on May 6.

Source: Thinkstock

By Kate Monica

- Individuals across the country ages 18 and older will soon have the opportunity to share EHR data with researchers and advance individualized precision medicine, treatment, and patient care delivery through the National Institutes of Health (NIH) All of Us Research Program.

NIH will open national enrollment for All of Us on May 6. Volunteers will share EHR data with researchers over the course of many years to enable extensive research about a variety of health conditions across patient populations.

The launch date for the nationwide initiative will kick off with community events in seven cities across the country, as well as an online event. Newly-enrolled volunteers will join the more than 25,000 participants already contributing EHR data to All of Us through a year-long beta test.

The ultimately goal of the initiative is to enroll more than 1 million volunteers and gather an abundance of EHR data from underrepresented communities to ensure the program is as diverse and comprehensive as possible.

All of Us is an ambitious project that has the potential to revolutionize how we study disease and medicine,” said HHS Secretary Alex Azar. “NIH’s unprecedented effort will lay the scientific foundation for a new era of personalized, highly effective health care. We look forward to working with people of all backgrounds to take this major step forward for our nation’s health.”

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The initiative is primarily centered on advancing precision medicine as an approach to disease treatment, prevention, and management. Precision medicine factors an individual’s lifestyle, environment, and biological makeup into care delivery. All of Us aims to improve health outcomes across communities.

“The All of Us Research Program is an opportunity for individuals from all walks of life to be represented in research and pioneer the next era of medicine,” said NIH Director Francis S. Collins, MD.

“The time is now to transform how we conduct research — with participants as partners — to shed new light on how to stay healthy and manage disease in more personalized ways. This is what we can accomplish through All of Us,” he continued.

The program will also help to foster a relationship between researchers and volunteers. Researchers and program participants will work together to achieve program goals, which may help to build trust among populations historically underrepresented in medical research.

Participants will be able to access their own EHR data, summary data about the entire participant community, and information about studies and findings resulting from All of Us research. 

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“All of us are unique, but today we live mostly in an era of ‘one-size-fits-all’ medicine,” said All of Us Research Program Director Eric Dishman. “I’m alive today because of precision medicine and I think everyone deserves that same opportunity no matter the color of your skin, your economic status, your age or your sex or gender. In other words, it will truly take all of us.”

Program participants will be asked to share a variety of health and lifestyle information, including data from online surveys and patient EHRs. Online surveys will cover topics about participants’ overall health and habits, as well as social determinants of health including the conditions of where they work and live.

“Building a diverse participant community will be vital to the success of All of Us, so we can address the many pressing health conditions that disproportionately affect underrepresented communities,” said All of Us Research Program Chief Engagement Officer Dara Richardson-Heron, MD.

“The All of Us Research Program has the potential to help researchers better understand and begin chipping away at health disparities so that everyone can benefit from better health, better health care and exciting new breakthroughs,” Richardson-Heron continued.

Participants will submit EHR data including information about medical histories, treatment side effects, and treatment effectiveness. Some participants will be asked to visit local partner sites to provide blood and urine samples and have physical measurements taken in the coming months and years.

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Moving forward, participants may be able to share health data with researchers through wearable devices and join follow-up research studies, including clinical trials.

NIH has offered funding to more than 100 organizations — including community groups, health centers, academic medical centers, private companies, and other organizations — to participate in the program. Participating organizations have collaborated to develop the program’s protocol and health IT systems, incorporate diverse communities in the project, enroll participants, and securely gather and store participant health information and biological samples for research purposes.

Later phases of the program will allow children to enroll in the program and let researchers gather a wider variety of data types, including genetic data. All of Us is ultimately intended to serve as an open data resource for academic researchers and scientists.

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