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Event set to launch ‘All of Us’ personalized medicine initiative

May. 3, 2018, 10:38 AM

 

The All of Us Research Program, which aims to accelerate the prevention and treatment of illness through precision medicine with the help of a million or more research participants across the United States, officially opens for national enrollment Sunday, May 6.

Launch events will be held nationwide to raise awareness and encourage enrollment in the program. Nashville’s event will be held from 2 to 5 p.m. at 301 Madison Street — the Madison Station location of FiftyForward, an advocacy and social services organization for people over age 50.

Co-sponsored by Vanderbilt University Medical Center (VUMC), the event will include a community education fair, music, food trucks and speakers. For more information, visit https://launch.joinallofus.org/location/nashville.

All of Us, a major component of the National Institutes of Health (NIH) Precision Medicine Initiative, is harnessing recent scientific and technological advances to enable individuals, in partnership with investigators and health care providers, to accelerate health research and medical breakthroughs. The goal is individualized prevention, treatment and care for everyone.

“We can improve the health of all of us by studying all of us,” explained Joshua Denny, MD, MS, VUMC’s Vice President for Personalized Medicine and director of the All of Us Data and Research Center. “We need all races, ages, ethnicities, health statuses … The scale is huge.”

People age 18 and older can join the program by logging onto https://www.joinallofus.org. They will be asked to provide health and lifestyle information through online surveys. They also can grant access to their electronic health records although they can still participate in the program without sharing that information.

Some participants will be asked to provide blood and urine samples and have basic physical measurements taken, such as height and weight. The collected data will be available to researchers to support thousands of studies across a wide range of health topics.

Privacy and security are high priorities for the program. Personal information that can easily identify participants will be removed from all data. DNA and other biological samples will be stored in a secure biobank.

The May 6 launch in Nashville will begin with a community educational fair featuring a variety of opportunities for people to improve their health and well-being.

At 3 p.m., a simulcast from Washington, D.C., will feature NIH Director Francis Collins, MD, PhD, All of Us Director Eric Dishman and Dara Richardson-Heron, MD, the program’s chief engagement officer.

At 3:30 p.m. WTVF-Channel 5 Meteorologist Lelan Statom will introduce local speakers, who include Denny, Nashville Mayor David Briley, Tennessee Rep. Brenda Gilmore, D-Nashville, U.S. Rep. Jim Cooper, D-Tennessee, FiftyForward Executive Director Janet Jernigan, and Michael Minor, EdD, director of Health Outreach and Prevention Education, National Baptist Convention.

 

QUESTIONS AND ANSWERS

 

What is precision medicine?

Precision medicine is an emerging approach for disease treatment and prevention that accounts for individual variability in lifestyle, socioeconomics, environment and biology.

 

How is Vanderbilt University Medical Center (VUMC) involved?

Joshua Denny, MD, MS, Vice President for Personalized Medicine at VUMC, has been involved in planning All of Us for over three years. In July 2016 VUMC was selected as the program’s Data and Research Center, with Denny as director.

Networks of health care provider organizations and convenience clinics have been assembled to help develop the massive organizational structure needed to enroll participants and collect, store and process their health data in a format useful to researchers around the world.

Working with Verily, the life science subsidiary of Google’s parent company, Alphabet Inc., and the Broad Institute of MIT and Harvard, VUMC developed processes for big data capture, cleaning and curation and sharing in a secure environment. To prepare for the national launch, more than 25,000 participants have submitted their health data during a year-long “beta test.”

 

What health data will I be asked to share?

Participants will be asked to complete online surveys that gather information about their health, lifestyle, demographic and environmental factors such as occupational hazards. They will be asked to authorize access to their electronic health records (EHRs), although they can still participate in the program without doing so.

Some will be asked to go to a collection site, such as a healthcare provider organization or clinic, to provide physical measurements, blood and other biological samples. Others will be asked to wear devices that can track their activity level throughout the day.

 

Who will have access to my data?

Researchers can apply to use the data to answer scientific questions. They can come from anywhere, from academic medical centers, pharmaceutical companies and the biotech industry. “I’d love to see teams of high school students coming on this resource,” Denny said. “They’d bring fresh ideas, learn a ton and certainly contribute.”

 

Will my privacy be protected?

For more than a decade, VUMC has been collecting DNA from individuals linked to their EHRs to enable studies of genetic contributions to disease and why people vary in their response to medications. The records are scrubbed of personal identifiers to preserve patients’ privacy.

All of Us will use similar procedures to protect the privacy of participants. “No system is perfect,” Denny said, “but all the data are tightly controlled, and the system is continually tested to make sure it is secure. We are working with internal and external security experts to secure and test the system.”

 

Can I obtain my health data?

Participants can choose to receive information about their health, including their risk for various diseases. This information can help them make informed decisions.

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