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The All of Us Research Program: One size does not fit all

Section Editor(s): Newland, Jamesetta A. PhD, FNP-BC, FAANP, DPNAP, FAAN

doi: 10.1097/01.NPR.0000541472.39043.62
Department: Editor's Memo

“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. 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.”1

—Francis S. Collins, MD, PhD, Director, National Institutes of Health (NIH)

The All of Us Research Program is a component of NIH's Precision Medicine Initiative, or medicine based on the individual and not a “one size fits all” approach. The program aims to recruit 1 million individuals representing the full spectrum of diversity in the United States, including populations that have been historically underrepresented in biomedical research. With some exceptions, most adults over the age of 18 years can join the program. The goal is to develop a large national research database that can inform future studies in a variety of health conditions, including factors that keep people healthy. All researchers will be able to access the database, which will bridge such diverse fields as human biology, behavior, genetics, environment, data science, and computation.

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Recruiting participants

Participants are asked to share basic information about their health, families, home lives, and work; give permission to access their electronic health records; and for some, provide biological samples. Longitudinal data will be collected for at least 10 years, aiming to keep participants involved until the end. Interested individuals can volunteer directly online or enroll in the program through an affiliated healthcare provider organization or community partner.

Ten nursing schools have been funded through a partnership between NIH and the American Association of Colleges of Nursing to participate in recruitment efforts through their established community relationships, particularly with underrepresented populations. The NIH has taken the expected steps to protect the privacy of participants.

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Getting involved

Possible outcomes from this research include “better tests to see if people are sick or are at risk of getting sick, better mobile apps to encourage healthy habits, and better medicine or information about how much of a medicine is right for each person.”2 Learn more at www.joinallofus.org.

This is an opportunity to have a voice in the future delivery of healthcare. There are downloadable brochures designed specifically for African American, Asian American, and Hispanic American communities, as well as others for the general population. Get involved as a participant or raise awareness through your network.

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The forefront of precision medicine

Williams and colleagues identified opportunities for advanced practice registered nurses (APRNs) to contribute to national efforts to improve genomic health.3 These included: increase genomic education for APRNs at all levels of care across the lifespan and within all practice settings; create user-friendly clinical decision support resources; and participate on institutional committees that set policies for healthcare knowledge systems. Precision medicine is front and center now. I encourage you to introduce your patients to the All of Us Research Program. Let's be a part of the movement.

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Jamesetta A. Newland, PhD, FNP-BC, FAANP, DPNAP, FAAN

EDITOR-IN-CHIEF NPEDIT@WOLTERSKLUWERHEALTH.COM

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REFERENCES

1. U.S. Department of Health & Human Services. What people are saying about the All of Us Research Program. 2018. http://www.allofus.nih.gov/news-events-media/media-toolkit/what-people-are-saying-about-all-us-research-program.
2. U.S. Department of Health & Human Services. All of Us Research Program: the future of health begins with you. 2018. http://www.joinallofus.org/sites/default/files/2018-01/AoU_National_FAQOnePager_Print_XCROP_V3_110917_SR_01_04_2018%2012_37_39.pdf.
3. Williams JK, Katapodi MC, Starkweather A, et al Advanced nursing practice and research contributions to precision medicine. Nurs Outlook. 2016;64(2):117–123.
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