Patient-Centered Outcomes Research Institute PCORI: What Is It? How Does It Work? The Director Explains

PCORI: What Is It? How Does It Work? The Director Explains

In this segment of Medscape One-on-One, Joseph Selby, MD, talks with Eli Adashi, MD, about his new role as head of the Patient-Centered Outcomes Research Institute, its mission, and how physicians might benefit from this institute created under the Affordable Care Act.

excerpt: 

"How Does PCORI Differ From the Cochrane Collaboration?

Dr. Adashi: A question you almost certainly have heard before and that some of our viewers almost certainly contemplated has to do with the distinction between PCORI and other undertakings, such as the Cochrane Collaboration and programs that engage in systematic reviews or meta-analysis of data. In what way does PCORI stand out to other efforts? Where is it unique and distinct?

Dr. Selby: I think the most striking difference is that we are a research funding institution. The Cochrane Collaboration collects, disseminates, and guides the creation of evidence syntheses. We will fund some evidence syntheses, but we'll also fund a lot of empirical research, including observational research and randomized comparisons. So, we are a funding institute of substantial size in distinction to, as you mentioned, the Cochrane Collaboration and several European organizations that synthesize data and go beyond synthesis to supporting policymaking.
The other distinguishing characteristic is that we don't make policy; we generate information....

Patient-Centered Outcomes Research Institute Amends Draft Research Agenda in Response to Public Comment -- WASHINGTON, April 25, 2012 /PRNewswire-USNewswire/ --

Patient-Centered Outcomes Research Institute Amends Draft Research Agenda in Response to Public Comment -- WASHINGTON, April 25, 2012 /PRNewswire-USNewswire/ --

".....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, M.D., 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....."

Comments needed - exp March 15th - Patients: Your Researcher Will See You Now!--Kathleen O'Malley

 CLICK HERE TO SUBMIT COMMENTS to PCORI.

Patients: Your Researcher Will See You Now!--Kathleen O'Malley:

Guest blogger Susan Woods, a physician and SPM board member, urges patients to help shape PCORI’s draft National Priorities for Research and initial Research Agenda, and offers her own comments here. The public comment period ends at 11:59 pm EST on March 15.

Patient voices are needed now!

The Patient Centered Outcomes Research Institute (PCORI) is soliciting input about patient-centered outcomes research. We blogged about this when they were seeking people to apply to be participants.

           Now the deadline to submit your comments is almost here.

PCORI is an independent, non-profit organization established by Congress through the 2010 Patient Protection and Affordable Care Act. Its mission is to help people make informed health care decisions by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers, and the broader health care community.
The legislation creating this group, governed by a 21-member board, is fascinating. Patient advocates must be part of the process: “For identifying research priorities, they take into account…a number of factors including variations and health disparities, the potential for new evidence to improve patient health, well-being, and the quality of care…as well as patient needs, outcomes, and preferences, the relevance to patients and clinicians in making informed health decisions….”
This is enlightenment in medical research. The law also states:
“All funded studies will have a strong orientation to the patient perspective and all will have patients involved in the development of the research, its governance and oversight, and its dissemination strategy.”

Comparative effectiveness research plan seeks input from all sides (including patients/families) deadline March 15th ... American Medical News

"PCORI leaders want feedback from patients, caregivers, clinicians and others on its research agenda. They want to know if the tentative agenda covers key subjects for which more evidence-based information is needed, said Eugene Washington, MD, MSc, PCORI's board chair and dean of the David Geffen School of Medicine at the University of California Los Angeles. The leaders also want to involve patients in a significant way in the research process, according to PCORI Executive Director Joe Selby, MD, MPH. "This initial agenda does not limit which conditions or treatments will be studied. It is a starting point," he said, adding that 2012 "will be a year of engagement."".........

Also: "The 53-day public comment period, which will end March 15, will be used to solicit feedback and revise the priorities and agenda before a final version of each is adopted by PCORI's Board of Governors."

Outcomes Research Institute Releases Priorities - in Public Health & Policy, General Professional Issues from MedPage Today - comments until March 15

WASHINGTON -- The new institute created by the Affordable Care Act (ACA) to study which medical treatments are the most effective will focus on broad areas of healthcare instead of specific drugs or procedures, according to a draft of its research priorities.
The institute, called the Patient Centered Outcomes Research Institute (PCORI), is a nonprofit organization with a 21-member board that will identify areas that can benefit from comparative effectiveness research, fund the research through $3 billion in grants over the next decade, and provide patients and clinicians with research findings.
Opponents of the healthcare reform law charge that PCORI will make decisions that will lead to clinical rationing.
Supporters of the ACA, however, say comparative effectiveness research is crucial to improving the U.S. healthcare system and that it won't lead to denying access to certain drugs or procedures. The law specifically prohibits the panel's recommendations from being "construed as mandates for practice guidelines, coverage recommendations, payment, or policy recommendations."........
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In draft recommendations released Monday, the PCORI board identified five broad areas where it determined comparative effectiveness research is needed. They are:

• Assessment of options for prevention, diagnosis, and treatment, with research focusing on patient preferences and decision-making as well as various factors that may affect patient outcomes.
• Improving healthcare systems, including focusing on coordination of care for patients with multiple medical conditions, and how use of nonphysician providers affects patient outcomes.
• Communication and dissemination of research, including ways to provide information to patients that helps them to talk with their healthcare providers about it, and ways to use electronic data (e-records) to support decision-making.
• Addressing disparities, including ensuring that research into the benefits and risks of various medical options addresses the needs of all patient populations.
• Designing "quick, safe, and efficient" patient-centered outcomes research and methodological research, and studying ways to improve the quality and usefulness of clinical data and follow-up studies.

"These priorities and agenda give a framework to and identify the broad questions that must be addressed so that patients can make better and more personalized decisions in partnership with their clinicians across all areas of health," said PCORI Executive Director Joe Selby, MD, MPH, in a press release.
Selby added that the early agenda is a starting point and PCORI hopes that patients, healthcare providers, and others will provide feedback and "think boldly" about research projects in all five areas.
The draft will be available for public comment until March 15, and PCORI will hold a public meeting in Washington on Feb. 27.

(U.S.) Medscape: Feds Target Roles of PAs and Nurses for Comparative Research

Clinicians, patients, healthcare organizations, and the general public can weigh in on the proposed agenda and research priorities of PCORI at the agency's Web site or at its National Patient and Stakeholder Dialogue meeting, set for February 27 in Washington, DC. More information about the meeting is available at the PCORI Web site.