JAMA: Patient engagement in the DNA of new research institute

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Greater involvement of patients, clinicians and others in the healthcare community in developing clinical comparative effectiveness research (CER) studies could reduce clinical uncertainty, speed adoption of meaningful findings and make such studies more useful in clinical decision-making, according to an article published in the April 18 issue of the Journal of the American Medical Association (JAMA).

The potential benefits of this involvement in CER will be tested by the Patient-Centered Outcomes Research Institute (PCORI) in Washington, D.C. Anne C. Beal, MD, MPH, COO of PCORI, outlined the model at a JAMA media briefing at the National Press Club.

“At PCORI, we actually have engaged not only in terms of thinking about patient engagement as a nice Kumbaya thing to do, but it is part of our DNA. It is what we do at all times,” said Beal.

The Patient Protection and Affordable Care Act created PCORI to fund and promote CER that will assist in decision-making, as well as advance the “quality and relevance of evidence concerning the manner in which diseases, disorders and other health conditions can effectively and appropriately be prevented, diagnosed, treated, monitored and managed through research and evidence synthesis," wrote Beal and colleagues in the article.

Beal explained that PCORI supports CER not only during primary research, but also when it comes to disseminating the findings. In addition to journal publication, Beal said the organization is exploring town halls or op-ed articles, as well as thinking about different mechanisms for reaching specific populations like women or non-English speakers. “It’s not enough just to have the research, we also need to have a plan and an agenda for how to get the research out there, how to make sure it is utilized properly by both patients, their care givers, as well as providers.”

PCORI emphasizes the voice of the patient in assessing healthcare options in its mission statement, which states that the organization is committed to promoting research that is “guided by patients, caregivers and the broader healthcare community.” Beal underscored the attention to patient needs by telling the story of her aunt, who was diagnosed with lung cancer at 83. While the focus of some studies examining treatment is the mortality outcome, Beal said her aunt’s priorities were not experiencing pain and not losing her hair.

“There may be a number of factors that really come into play, so when we think about the type of outcomes that are available to patients and the types of treatments we think about making available to our patients, what we also need to keep in mind is that patients have different priorities and we need to respect that, as well as then develop research which allows patients to really make those decisions that are based on outcome measures that are relevant to them,” she said.

Before major funding for research could begin, PCORI was required to develop national priorities for research and a research agenda, and post both for a public comment period last year. The process produced five national priorities:

  1. Assessment of options for prevention, diagnosis and treatment;
  2. Improving healthcare systems;
  3. Dissemination and communications research;
  4. Addressing disparities; and
  5. Accelerating patient-centered outcomes research and methodology.

The first funding announcement from PCORI solicited projects focused on methods for engaging patients and other stakeholders in the research process, and there have been more than 800 responses to this announcement, according to the authors. A modified merit review—which includes scoring criteria on the extent of patient engagement and involves patients, caregivers and clinicians in the merit review process—is currently being conducted.

The organization is analyzing feedback from the comment period, making any necessary revisions to the priorities, and the initial funding announcements are expected on May 21, according to Beal.