Controversial PCORI Vows to Live Up to 'Patient-Centered'

April 18, 2012

April 18, 2012 — The controversial Patient-Centered Outcomes Research Institute (PCORI), created under healthcare reform to conduct comparative effectiveness research (CER), means to live up to its name, said one of the organization's physician leaders yesterday.

She focused on one patient in particular — her aunt — to underscore that point.

During a media briefing sponsored by JAMA in Washington, DC, Anne Beal, MD, MPH, PCORI's chief operating officer, said that when her aunt was diagnosed with lung cancer at age 83, she had clinical outcomes in mind that might not ordinarily occur to a researcher.

"Her priorities were 'I don't want to have pain and I don't want to lose my hair'," said Dr. Beal, a pediatrician.

"Patients have different priorities, and we need to respect that [and] develop research which allows patients to really make those decisions that are based on outcome measures that are relevant to them," said Dr. Beal.

The Affordable Care Act (ACA) established PCORI to make apples-to-apples comparison of different ways to prevent, diagnose, or treat a clinical condition and then spread these findings to clinicians and patients alike for the sake of better decision-making. At its simplest level, CER would determine, for example, which of 2 drug regimens does the best job in helping a certain kind of patient with diabetes control his or her level of hemoglobin A1c.

Like other elements of the ACA, PCORI has drawn flak from social conservatives, who say the independent group is part of a Big Brother effort to ration healthcare. Some critics have tagged it as a "death panel" for the elderly and infirm. However, the ACA prohibits the Department of Health and Human Services from using PCORI research to determine "coverage, reimbursement, or incentive programs" under Medicare that discriminates against such vulnerable groups.

In her talk yesterday, Dr. Beal painted a picture of PCORI that was at odds with its diabolical image in some quarters. Patient-centeredness, she said, is 1 of 9 criteria for any CER research funded by the group. In addition, PCORI organized patient and caregiver focus groups in 4 cities last fall in an effort to develop its research agenda.

The patient emphasis will continue once CER research is published. Dr. Beal said PCORI is trying to figure out how to share the fruit of CER with the public so it does not remain on the shelf in a medical journal. "JAMA alone is not enough," she said. PCORI will require researchers applying for grants to propose how they will disseminate their findings — through town hall meetings, for example — and how they will tailor their approach to different demographic groups, such as young women versus older women, or non-English speakers.

At PCORI, patient engagement is not just "a nice Kumbaya thing to do," said Dr. Beal. "It is part of our DNA. It is what we do at all times."

PCORI to Announce Research Funding Opportunities in May

The ACA has generously funded PCORI for its mission, establishing a head tax on Medicare and private insurers that will raise an estimated $500 million in 2014.

The group will soon take a major step toward spreading some of that money around. Next month, PCORI expects to announce its preliminary CER research agenda, which will cover a range of interventions and conditions. PCORI will accept funding applications through July and announce the projects that will receive funding in December.

Dr. Beal, along with PCORI Executive Director Joe Selby, MD, MPH, and Lori Frank, PhD, the group's director of engagement research, coauthored an article published in JAMA yesterday that describes how the group is making progress toward its goals.

More on PCORI is available on the organization's Web site.

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