Fourteen national community groups and health care provider associations have partnered with the All of US Research Program, part of the National Institutes of Health (NIH), to help raise awareness about the programme — an effort to engage 1 million or more volunteers across the country to build one of the largest, most diverse datasets of its kind for health research.
This inaugural group of organizations will receive a combined $1 million to help educate their communities about the benefits of participation in this landmark project to accelerate breakthroughs in precision medicine.
“We want to build long-term relationships with our participants based on transparency and trust. These organizations will help us in that effort,” said Eric Dishman, director of the All of US Research Program at NIH. “We will look to them for input about what their communities want and need, as we work to create a research program that’s meaningful for researchers and participants alike.”
All of Us participants will share information over many years in a variety of ways, through surveys, electronic health records, physical measurements, blood and urine samples and wearable technologies. Researchers of all types, from citizen scientists to investigators in academia and industry, may request free access to the data, which will be de-identified to protect participant privacy. Their analyses may yield new insights about how individual differences affect health and disease, potentially leading to more tailored treatments and prevention strategies in the future.
NIH is collaborating with its engagement awardee HCM Strategists to administer these partnerships.
“The organizations will conduct a variety of activities as part of their involvement in the program, which may include holding events, gathering public input, training program ambassadors, leading social media campaigns, developing additional messaging that speaks to the value of participation for their communities and offering continuing education credits for health care providers,” said Ronnie Tepp, HCM’s principal investigator.
These key activities will add to the work already underway by an initial set of community engagement partners and other awardees in the program’s nationwide consortium.
“It’s been essential for us& mdash; from the very start — to have diverse voices at the table, weighing in on the best ways to engage and retain diverse communities in this program,” said Dara Richardson-Heron, M.D., chief engagement officer of the All of Us Research Program. “These organizations will help us take things to the next level. They bring a wealth of experience and deep connections to their communities. It’s a privilege to welcome them to our network.”
The organizations include: American Academy of Family Physicians, Leawood, Kansas, American Academy of HIV Medicine, Washington, D.C, American Association of Colleges of Nursing, Washington, D.C, American Medical Association, Chicago, Arab Community Center for Economic and Social Services, Dearborn, Michigan, Asian & Pacific Islander American Health Forum, Oakland, California, Association of Nurses in AIDS Care, Uniontown, Ohio, Black Women’s Health Imperative, Washington, D.C, Cobb Institute (W. Montague Cobb/National Medical Association Health Institute), Washington, D.C, League of United Latin American Citizens, Washington, D.C, National Baptist Convention, Nashville, Tennessee, National Hispanic Medical Association, Washington, D.C, National Minority Quality Forum, Washington, D.C, UnidosUS, Washington, D.C.
The All of Us Research Program is currently in beta testing, with an anticipated national launch in Spring 2018.