NIH ‘All of Us’ Program Emphasizes Patient Engagement

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The clinical research enterprise will benefit in significant ways if industry “co-creates” with patients, says Eric Dishman, director of the All of Us Research Program managed by the National Institutes of Health (NIH).

That doesn’t mean dumping a deluge of data on patients after a trial, Dishman cautions. “We must provide a responsible return of data with context,” he says. Dishman spoke at an NIH All of Us Research Program Scientific Priorities Workshop March 21 in Bethesda, Md. The workshop is designed to educate the medical community—both providers and patients—and propel the All of Us program into the next phase.

The ambitious, decades-long program is a historic effort to gather data from 1 million or more people living in the United States to accelerate research and improve health. By taking into account individual differences in lifestyle, environment, and biology, researchers will uncover paths toward delivering precision medicine.

NIH began to roll out the program last November.

The mission is simple, even if the challenges won’t be easy. The goal is to “accelerate health research and medical breakthroughs enabling individualized prevention, treatment, and care for all of us,” Dishman told attendees.

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NIH describes the program as a key element of the Precision Medicine Initiative (PMI). “Through advances in research, technology, and policies that empower patients, the PMI will enable a new era of medicine in which researchers, healthcare providers, and patients work together to develop individualized care,” the agency says.

PMI launched in fiscal year 2016 when $130 million was allocated to NIH to build a national, large-scale research participant group, called a cohort, and $70 million was allocated to the National Cancer Institute to lead efforts in cancer genomics as part of PMI for Oncology.

A set of core values is guiding the development and implementation of the All of Us Research Program:

  • 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 importance.
  • The program will be a catalyst for positive change in research.

Author: Michael Causey