NEW YORK – To a casual observer, it may seem that the Patient-Centered Outcomes Research Institute is moving slowly, but for Eugene Washington, the chairman of PCORI’s Board of Governors, the group’s deliberations reflect the goal of having the body be more than just another driver of comparative effectiveness research.

“There’s never been an organization or an entity in the country that has been charged with essentially changing the conversation and changing the expectations that take place between patients and all other entities involved in the health care system, and that’s what we want to achieve as a primary deliverable five years, 10 years from now,” Washington said.

Speaking to “The Pink Sheet” following the conclusion of the first day of the board’s May 16-17 meeting – its fourth since being set up as mandated in the Affordable Care Act – Washington emphasized that the change comes only with the patient sitting at the center of PCORI’s activities (Also see "Patient Engagement A Key Part Of PCORI’s “Tier 1” Grants" - Pink Sheet, 23 May, 2011.).

“If we can … truly put the patient in the driver seat where they are making the decisions, and we see ourselves as enablers to those patients, then we will have succeeded,” Washington said.

He emphasized that pursuing such a patient-centric focus was not necessarily a path taken to differentiate PCORI from other organizations that conduct comparative effectiveness research.

“We’re thinking that way because we see that as a transformative opportunity,” Washington said.

The Non-Traditional Stakeholder

One way that Washington hopes this transformative opportunity will be realized is by having more involvement by non-traditional stakeholders.

Comparative effectiveness organizations traditionally may solicit input from a wide range of stakeholders at various points in the process, but rarely are they involved to the degree that PCORI is envisioning, which is to say throughout the process.

Washington highlighted three specific groups that PCORI is hoping to leverage to make its findings more useful, starting with a greater involvement by patients themselves, and by extension providers.

“I am not just talking about docs,” Washington said. “I am not even just talking about nurses. I am talking about provider systems.” He said that group is very important because of the role that provider systems play in the decision-making process.

“That group of stakeholders is critical to us because along with the information being in the room or in the setting where the decision is being made, after the patient, the next most important player is going to continue to be whoever that provider or caregiver is.”

Washington also is looking to tap into the expertise that researchers possess.

“That’s an important group that we want to engage because we want to change their way of thinking about research,” Washington said. “We want their standard to be defining the research question in the context of what’s important to the patients.”

A third group Washington is looking for involvement from is policymakers, but not in the context of making coverage decisions. He noted that policymakers do have a role in health care decision making outside of simply making a coverage determination and believes their input would be valuable to the process.

Washington also noted that greater involvement from professional societies would be beneficial. He noted that those working in such groups have a unique perspective that contains the full spectrum of the non-traditional stakeholders he identified, in that they can be providers, researchers and policymakers all in one.

Washington does not think bringing in so many different more perspectives will bog down the research process, provided the focus stays on providing data that is most important to patients.

“My own view is as long as we remain focused on [patients] as the center of our universe, then we will maintain balance in how we bring in the other groups,” Washington said. “We’ll stage it in a way that they are brought in at the appropriate times such that it doesn’t sacrifice the focus that we keep and the attention that we put on patients first.”

ACA Challenges Not On The Radar

One thing that Washington expressed little concern over was the current legal challenges to the health care reform law, which created PCORI.

He noted that what happens in the courts is something outside of the control of PCORI, and thus is not commanding attention of the board members, particularly given the amount of work the group is engaged in.

Despite that, the institute’s budget includes a line item for a cash reserve to ensure that if there is any disruption in the funding from the government, PCORI will be able to meet its financial commitments.

By Gregory Twachtman

PCORI Is A “Transformative Opportunity” – Chairman Washington

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