In a letter to the Patient-Centered Outcomes Research Institute (PCORI), PIPC Chairman Tony Coelho discusses important elements of the priority-setting processes for comparative effectiveness research (CER). Chairman Coelho recommends that PCORI provide separate, sequential public comment periods on the CER research priorities and CER research agenda. In addition, as PCORI develops draft research priorities and a research project agenda, he asks that the Institute provide adequate opportunity for broad input from patients, physicians and other providers with relevant clinical expertise. Further, Chairman Coelho suggests that PCORI describe a systematic process for describing how input it receives will be considered and incorporated.
PIPC Comments: AHRQ Draft Report: Engaging Stakeholders To Prioritize Future Research Needs7/8/2011
PIPC appreciates the steps the Patient Centered Outcomes Research Institute (PCORI) has taken over the past few months to provide more open, transparent operations and reach out to various stakeholders. In this comment letter, PIPC recommends several additional steps PCORI should take to convey its commitment to patient-centered outcomes research, and strengthen its operations. These steps will ultimately help to increase the patient and provider community's confidence and trust in PCORI’s work.
In a letter to the Patient Centered Outcomes Research Institute’s (PCORI’s) Board of Governors, Chairman Tony Coelho says that PIPC is pleased that PCORI has released four draft definitions of “patient-centered outcomes research” early in the process of their development. Chairman Coelho writes, “The definition of this term is a very important issue for our members, and is foundational to PCORI’s work. Therefore, in response to the Board’s verbal requests for comments, PIPC would like to take this opportunity to articulate some basic principles that we hope can guide the definition of the term.” A copy of the letter is available below.
Poll: Patients Favor CER Focused on Providing Information, Rather than Making Coverage Decisions3/1/2011
PIPC conducted a poll of registered voters in March, 2011 related to the new Patient-Centered Outcomes Reearch Institute and comparative effectiveness research (CER). Among its findings, the poll found that voters favor a comparative effectiveness institute focused on providing information, not making coverage decisions. Click here to view the summary of findings.
White Paper: Priority-Setting for Comparative Effectiveness Research: A Review of Key Elements3/1/2011
This White Paper inventories and discusses the basic elements of the framework for CER that are identified in PPACA and compares these requirements to current procedures developed and used by the Agency for Healthcare Research and Quality (AHRQ) to conduct CER through its Effective Health Care Program and through the funding provided by the American Recovery and Reinvestment Act. Finally, the paper identifies issues related to these elements to monitor as implementation of PCORI gets underway in the coming months.
In comments delivered at today’s PCORI board meeting, PIPC Steering Committee member Katie Orrico commented that it is important to engage the broader community in all aspects of PCORI’s decision-making, not just share decisions after they are made. She explained that allowing for adequate, equal, and broad stakeholder representation throughout PCORI’s research priority setting process could foster more rapid adoption and use of research results. A copy of Ms. Orrico’s comments is available below.
In partnership with the National Health Council and the National Working Group On Evidence-Based Health Care, PIPC has submitted comments to the Government Accountability Office (GAO) regarding appointees to the PCORI Board of Governors. Considering that Andrew Imparato, President and CEO of the American Association of People with Disabilities, is not be able to serve on the PCORI Board of Governors due to his new position with the Senate Committee on Health, Education, Labor, and Pensions, the letter strongly urges the GAO to appoint another representative of the patient advocacy community to again fill this position.
This paper inventories and discusses the basic elements of the framework for comparative clinical effectiveness research that are identified in PPACA: requirements for stakeholder participation in comparative clinical effectiveness research; requirements for transparency in procedures and operations; requirements for public opportunity to comment on research priorities and to be engaged in Patient-Centered Outcomes Research Institute (PCORI) review processes; and requirements for open decision-making processes. This paper also compares these requirements to current procedures developed and used by the Agency for Healthcare Research and Quality (AHRQ) to conduct comparative effectiveness research through its Effective Health Care Program and through the funding provided by the American Recovery and Reinvestment Act (ARRA).
This week, Tony Coelho, chairman of the Partnership to Improve Patient Care (PIPC) sent a letter to the Assistant Secretary for Planning and Evaluation at Department of Health and Human Services (HHS), Sherry Glied, urging the agency to work in close coordination with the new Patient-Center Outcomes Research Institute (PCORI) as it considers developing an inventory of comparative effectiveness research (CER). PIPC sent the letter in response to HHS soliciting recommendations on how to build a CER database.
Dear Chairman Baucus and Chairman Conrad:
The Partnership to Improve Patient Care (PIPC) is writing in support of the “Patient-Centered Outcomes Research Act of 2009” (S. 1213) as a sound framework for comparative clinical effectiveness research that helps center CER on patients and providers and incorporates the science of personalized medicine into the research program. |
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