Patient-Centered Outcomes Research Institute Amends Draft Research Agenda in Response to Public Comment
WASHINGTON, D.C. (April 25, 2012) – The Patient-Centered Outcomes Research Institute Board of Governors voted today to amend PCORI’s draft Research Agenda in response to public comments, adding or refining language to respond to the 15 major themes that emerged from more than 450 public comments. It did not recommend changes in PCORI’s National Priorities for Research, saying the public comments did not identify significant gaps in the five proposed priorities.
The Board, during a public teleconference/webinar, also authorized $30 million in funding over two years for a slate of 50 pilot projects that will address a broad range of questions about methods for engaging patients in various aspects of the research and dissemination process.
A full final version of the National Priorities and Research Agenda, including accepted revisions, will be posted May 21 after final Board review and approval at its next public meeting, in Denver.
“We have heard from the public and have made important changes to our initial Research Agenda that reflect their input,” said PCORI Board Chair Eugene Washington, MD, MSc. “Today’s action reflects our commitment to transparency and engagement of stakeholders throughout our work. We are one step closer to funding critical research to address important questions from a patient-centered perspective. We look forward to releasing our final priorities and agenda in May.”
PCORI’s Board of Governors reviewed the 474 comments it received during a 53-day public comment period on the National Priorities and Research Agenda. A thorough analysis of the written comments noted 53 recurring themes. Some were closely related, and 15 major, aggregated themes were identified. The Program Development Committee of PCORI’s Board worked with PCORI staff to develop responses to each theme.
After discussion, the Board voted to make important changes to the Research Agenda. These include clarification of PCORI’s focus on patient engagement and transparency; on patients with multiple chronic conditions; on patients with rare diseases; on improving health care systems, including care coordination, access to care, and the role of practice settings and allied health professionals; and on the importance of health literacy.
“The comments we received did not identify major gaps in the National Priorities, and there were no suggestions for additional priorities,” said PCORI Executive Director Joe Selby, MD, MPH. “This indicates that our priorities effectively capture the broad areas where more research is needed. Once the revised National Priorities and Research Agenda are approved, we will issue PCORI’s first primary research funding announcements, which will emphasize the inclusion of patients and caregivers at all stages of the research.”
PCORI reiterated its commitment to being a learning organization that will continually work with patients and stakeholders to revise its priorities and agenda as needed to address patients’ evolving needs. “This is our first research agenda and we will continue to refine and define our areas of focus to make the agenda more specific over time,” Selby said. “This was a common request from our stakeholders. Through forums, advisory groups and other outreach initiatives, PCORI’s engagement team will develop with patients and stakeholders targeted funding announcements that address specific areas where more research is needed.”
PCORI will commit approximately $120 million of research funding by the end of the year through broad funding announcements that will be based on its initial Research Agenda, in addition to the $30 million awarded for pilot projects.
The slate of pilot projects approved by the Board includes 50 projects that will receive funding for up to two years at a total of approximately $15 million per year. Proposals were selected on the basis of review for scientific merit and rigor and fit within the eight areas of interest outlined in the pilot projects announcement. Awards approved included those for projects designed to develop a range of tools and techniques aimed at improving patient-centered care and decision-making; create new patient-centered care measures; and improve delivery of patient-centered counseling and care in various health care settings.
PCORI will post details on all pilot projects approved for funding after all awardees have been notified.
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, non-profit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continuously seeking input from a broad range of stakeholders to guide its work.