Today, the Patient-Centered Outcomes Research Institute (PCORI) Board of Governors approved $50 million in targeted funding for four specific areas of research related to hepatitis C resulting from its expert advisory group meeting held on October 17, 2014. Patients and patient advocates applauded PCORI for convening diverse stakeholders and for using a process that, with continued patient engagement, will prioritize the research questions that matter most to patients.
PIPC Chairman Tony Coelho moderated a forum today on Building a Patient-Centered Health System. At the forum, Congressional staffers discussed their ongoing work in Congress and appreciation for PIPC’s work to keep patients at the center of health care. Ms. Sue Sheridan provided the audience with an update on the ongoing work of PCORI to engage patients in research. Dr. Kristin Carman presented the Patient and Family Engagement Roadmap developed by the American Institutes for Research (AIR). Ms. Sally Okun discussed the work of PatientsLikeMe to connect networks of patients and their recent work on an Open Research Exchange. And finally, Dr. Tanisha Carino discussed the ongoing work of Avalere to support alternative payment models, and particularly their work on the use of Patient-Reported Outcome Measures.
PIPC is deeply concerned about MedPAC’s discussion of giving CMS new authority to make “least costly alternative” judgments about patient treatment options. PIPC fought hard for patient protections in the Affordable Care Act that ensure CMS does not misuse comparative effectiveness research to impose “one-size-fits-all” coverage or payment policies. LCA could undercut these protections and prevent doctors and patients from making informed decisions about the treatment option that is best for the individual patient. We urge MedPAC not to move forward in recommending new LCA authority for CMS.
In a recent BMJ article on evidence-based medicine, the authors warn that an over-dependence on clinical evidence could inappropriately drive clinical decisions according to a rule rather than encouraging providers to respond to the needs of the patient. "Inflexible rules and technology driven prompts may produce care that is management driven rather than patient centered," the authors comment. "Evidence based guidelines often map poorly to complex multimorbidity." Responding to the article, PIPC Chairman Tony Coelho agrees that "a return to 'real' evidence-based medicine means bringing the patient back to the center."
Today, Sara van Geertruyden, Executive Director of the Partnership for Improved Patient Care (PIPC), addressed the Patient-Centered Outcomes Research Institute's (PCORI) Board of Governors regarding the Patient Engagement Advisory Panel. Ms. van Geertruyden sits on the advisory panel and provided the board with insight into their recent roundtable regarding PCORI’s development of an Evaluation Roundtable.
PIPC issued the following statement in response to discussion on use of CER in Medicare payment policy at today’s meeting of the Medicare Payment Advisory Commission.
“Clinical evidence, and comparative effectiveness research (CER) in particular, can play a valuable role in empowering patients to make good decisions about the range of treatment options based on their unique circumstances and characteristics,” PIPC Chairman Tony Coelho said. “PIPC is concerned that expanded CMS authority to use CER in Medicare would result in one-size-fits-all policies that create patient access barriers. The discussion today highlights the importance of advancing principles of patient-centeredness in Medicare payment policy.”
Today, PCORI announced that Deputy Executive Director Anne Beal, MD, MPH, will be leaving on March 9 for a new position as Senior Vice President and Chief Patient Officer with Sanofi S.A., where she will work with various divisions of the firm to create a holistic understanding of the patient’s daily experience and translate patient concerns into novel healthcare delivery solutions. Dr. Beal was PCORI’s first Chief Officer for Engagement and also its first Chief Operating Officer.
PIPC welcomes Alicia Fernandez, MD, as the newest member of the PCORI Board of Governors. PIPC Chairman Tony Coelho stated, “I want to congratulate Dr. Fernandez on her appointment to the PCORI Board of Governors. I look forward to learning more about her work to engage patients in research, and particularly her insight on how to make research relevant to subpopulations that often receive disparate care in our healthcare system. It is important that the PCORI Board of Governors represent diverse stakeholder views, as was intended by Congress. PIPC’s members look forward to working with Dr. Fernandez to advance PCORI’s work in a manner that engages patients and clinicians so that research findings are useful at the point of healthcare decision-making.”
PIPC Chairman Tony Coelho issued the following response to a recent op-ed published in Bloomberg by Dr. Peter Orszag, former director of the Office of Management and Budget (OMB).
Dr. Orszag reveals in his critique of PCORI the very conceit the Institute was designed to avoid – a research agenda designed by “the experts” to cut costs, instead of an agenda shaped by patients and doctors to improve care. Rather than pursue a research agenda as defined by an insular group of experts in Washington, PCORI was set up to engage patients, caregivers and the publicly directly, and give them a real voice in decision-making, in order to ensure that the Institute was studying the questions that matter most.
PIPC Chairman Tony Coelho praised comments made by Dr. Joe Selby, Executive Director of the Patient-Centered Outcomes Research Institute in which he highlighted the importance of PCORI’s broad research agenda, and the need for an explicit research priority setting process that engages patients and other stakeholders.
Today, the Partnership to Improve Patient Care (PIPC) released a new flow chart - which supplements a recent White Paper, "Road Map for Prioritizing Research” - which graphically represents PIPC's recommendations for determining comparative effectiveness research (CER) priorities.
PIPC Holds 4th Annual Forum on Disseminating Comparative Effectiveness Research, Releases White Paper on “Road Map for Prioritizing Research”
Today, the Partnership to Improve Patient Care (PIPC) held its 4th Annual Forum in Washington, DC to explore how comparative effectiveness research (CER) entities can change the culture of research to be more patient-centered. The Forum, held at the Reserved Officers Association Building on Capitol Hill, featured a panel of highly respected thought-leaders who shared insights on the progress of the Patient-Centered Outcomes Research Institute (PCORI) in engaging stakeholders to identify research priorities, discuss patient-centered dissemination strategies, and explore the application of usability criteria throughout the research process.
The Partnership to Improve Patient Care (PIPC) today released a detailed analysis of the Patient-Centered Outcomes Research Institute (PCORI) three years since its creation under the Affordable Care Act. The purpose of the analysis was to assess PCORI’s progress in meeting its statutory mandate to prioritize, conduct, and communicate patient-centered comparative effectiveness research (CER).
The Partnership to Improve Patient Care (PIPC) today announced the addition of two new members to its Steering Committee, the Association of Clinical Research Organizations (ACRO) and the American Osteopathic Association (AOA). Their addition raises the number of current Steering Committee members to 13. PIPC is comprised of a total of over 45 member organizations.
The Partnership to Improve Patient Care (PIPC) welcomes the selection of Dr. Grayson Norquist as the new Chairman of the PCORI Board of Governors. PIPC’s Chairman Tony Coelho stated, “Although we were disappointed when Dr. Washington resigned as the PCORI Board Chair, I am pleased by today’s decision by the Government Accountability Office (GAO). Dr. Norquist has consistently provided thoughtful insights during PCORI’s Board proceedings, including a continued emphasis on engaging patients and their caregivers in PCORI’s work. He embraces the vision and opportunity of PCORI as an Institute doing research differently so that it is guided by, and responsive to, the needs of patients and their caregivers.”