The National Institutes of Health’s (NIH) All of Us Research Program (formerly the Precision Medicine Initiative Cohort Program) within NIH Office of the Director has issued a new funding opportunity for organizations interested in helping engage volunteers. The funding opportunity is open to national and regional organizations, as well as local community groups. The program is designed to support activities to promote enrollment and retention in the All of Us Research Program across diverse communities. All of Us, unlike the majority of NIH-supported research, is not focused on a particular disease or population. The program is intended to “serve as a national research resource to inform thousands of studies, covering a wide variety of health conditions.” The agency plans to launch the All of Us program later this year.
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On October 12, the National Institutes of Health (NIH) announced that the Precision Medicine Initiative (PMI) Cohort Program has been renamed the All of Us Research Program. The name change, according to the announcement, reflects the study’s core values, which include “participation is open to all; participants reflect the rich diversity of the U.S.; participants are partners; participants have access to their information; data will be accessed broadly for research purposes; security and privacy will be of highest priority; and the program will be a catalyst for positive change in research.” The program’s name change also incorporates the feedback NIH received via its community engagement events and one-on-one outreach activities, particularly the response it received around the use of the word “cohort.” In addition to changing the study’s name, All of Us launched an online form designed to gather input.
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On April 7, National Institutes of Health (NIH) Director Francis Collins appeared before the Senate Appropriations Subcommittee on Labor, Health and Human Services, and Education (Labor-HHS), accompanied by five of the NIH’s 27 institute and center directors and/or acting directors. Attending were: Richard Hodes, National Institute on Aging (NIA); Doug Lowy, National Cancer Institute (NCI); Nora Volkow, National Institute on Drug Abuse (NIDA); Walter Koroshetz, National Institute of Neurological Disorders and Stroke (NINDS); and Christopher Austin, National Center for Advancing Translational Sciences (NCATS). (more…)
National Institute of Health (NIH) Director Francis Collins recently announced the appointments of Eric Dishman as the Director of the Precision Medicine Initiative (PMI) Cohort Program and Matthew Gillman as the Program Director of the NIH Environmental Influences on Child Health Outcomes (ECHO). (more…)
The December 10-11 meeting of the National Institutes of Health (NIH) Advisory Committee to the Director (ACD) included an update on the progress of several high-profile initiatives NIH is developing, including the Congressionally-mandated NIH-Wide Strategic Plan, the President’s proposed Precision Medicine Cohort Program, assessment of the NIH HIV/AIDS Research Priorities, and the NIH Big Data to Knowledge (BD2k) program. (more…)
The National Institutes of Health (NIH) is seeking proposals for pilot studies and “the needed information technology support for the development of the Direct Volunteer component of the Precision Medicine Initiative (PMI) Cohort Program.” The agency plans to build a “national research cohort of one million or more volunteers who are engaged as partners in a longitudinal, long-term effort to identify the molecular, environmental and behavioral factors that contribute to diverse diseases, to facilitate the development and testing of novel therapies and prevention approaches, and to pioneer mHealth [mobile health] strategies for improving the efficacy of health care.” To that end, NIH released a series of funding opportunities announcements (FOAs) related to PMI and the implementation of the PMI Cohort Program along with two funding opportunities associated with “Other Transaction awards” to facilitate the development of a pilot program designed “to inform the creation of the direct volunteer enrollment component of the cohort” and an accompanying communication infrastructure “vital to conveying the importance of this research effort.” (more…)
On September 17, the National Institutes of Health (NIH) Advisory Committee to the Director (ACD) presented its recommended design framework for building a national research participant group, or “cohort,” of one million or more Americans, that would be part of the President’s proposed Precision Medicine Initiative (PMI) (see Update, April 21, 2015 and June 15,2015).
In a statement accepting the ACD’s recommendations, NIH Director Francis Collins pointed to the need to remain nimble and adaptable as the Initiative progresses. The agency intends to move quickly to build the necessary infrastructure so that participants can begin enrolling in the cohort in 2016. The long-term goal is to enroll at least 1 million participants in three to four years. (more…)
The National Institutes of Health (NIH) is seeking feedback from the scientific community regarding using mobile Health (mHealth) technologies for the Precision Medicine Cohort. The agency points out that the collection of health and lifestyle data on “participant volunteers” have generally come from medical records and extensive phone or paper surveys.
For the Precision Medicine Initiative (PMI), the agency is considering using smart phone and wireless technologies to collect some of this information (See Update, June 15, 2015). The use of these devices, however, generates a number of considerations for which NIH is seeking feedback:
- Willingness of participants to carry their smartphone and wear wireless sensor devices sufficiently throughout the day so researchers can assess their health and activities.
- Willingness of participants without smartphones to upgrade to a smartphone at no expense.
- How often people would be willing to let researchers collect data through devices without being an inconvenience.
- The kind of information participants might like to receive back from researchers, and how often.
- Other ways to conveniently collect information from participants apart from smart phones or wearable devices.
The agency will collect feedback on the topics through July 24, 2015 on the NIH’s website.
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Senator Lamar Alexander (R-TN) and Representative Marsha Blackburn (R-TN) addressed a special session of the National Institutes of Health (NIH) Advisory Council to the Director (ACD) Precision Medicine Initiative Working Group at the Public Workshop, Digital Health Data and Research Cohort Design, on the campus of Vanderbilt University on May 28-29.
The workshop is part of series by the ACD Working Group and builds on the April 28-29 workshop held on the NIH campus that focused on the development and implementation of a large national cohort, as well as identification of the unique scientific questions and opportunities of using such a large cohort. Two additional workshops are planned for July. The ACD Working Group is scheduled to submit its recommendations to the ACD at its September meeting, including a plan standing by to fund at the beginning of the fiscal year which begins October 1, should the Congress provide the necessary resources. (more…)
The National Institutes of Health (NIH) is seeking feedback (NOT-OD-15-107) to help it in creating a national research cohort of one million or more Americans as part of the President’s proposed Precision Medicine Initiative (PMI) (see Update, May 19, 2015). The agency is specifically interested in feedback relating to the development and implementation of effective community engagement strategies for the cohort, and the ability to conduct transformative research to address health disparities. The aim is to assemble a “cohort reflective of the rich diversity of the U.S. population.” (more…)