I’m very pleased to report a major milestone in the Patient-Centered Outcomes Research Institute’s drive to start funding badly needed studies designed to address important clinical questions from a patient perspective.
PCORI’s Board of Governors voted today to revise our draft initial Research Agenda to reflect the input we received from a broad range of stakeholders during a 53-day public comment period that ended in mid-March. I want to personally thank the hundreds of individuals and organizations who took time to provide thoughtful feedback on our work.
All told, we received 474 comments, including many multi-page documents, all of which were thoroughly analyzed. We identified more than 200 distinct suggestions which fell into 15 broad themes. These themes were considered as potential sources of changes to the draft National Priorities and Research Agenda that we released in January. During a special public teleconference and webinar today, the Board voted to revise the draft Research Agenda to clarify our focus on:
- Patient engagement and transparency;
- Patients with multiple chronic conditions;
- Patients with rare diseases;
- Improving health care systems, including care coordination, access to care, and the role of practice settings and allied health professionals; and
- The importance of health literacy.
Today’s webinar reflects PCORI’s commitment to transparency throughout our work. We are a stakeholder-driven organization and value the input we receive and relationships we are building with patients, caregivers, clinicians, researchers and others throughout the health care system.
A full, final version of the National Priorities and Research Agenda, including the revisions approved today, will be considered for Board approval at its next public meeting in Denver.
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 research. PCORI aims to commit approximately $120 million of research funding by the end of this year through broad funding announcements that will be based on our initial Research Agenda. That’s in addition to $30 million that the Board awarded for PCORI Pilot Projects during today’s webinar.
This is our first Research Agenda. We intend to continue refining it and defining our areas of particular focus that will make the agenda more specific over time. Through forums, advisory groups and other outreach initiatives, we will work closely with patients and stakeholders to develop targeted funding announcements that address critical areas where more research is needed to support enhanced clinical decision-making by patients and those who care for them.
We look forward to continuing to work with you to advance patient-centered research. As always, I welcome your comments on how we can do a better job. Contact me at email@example.com.
Joe V. Selby, M.D., M.P.H
Executive Director, PCORI
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