“I look forward to collaborating with HHS to effectively bring the patient voice to their ambitious new framework to move our health care system away from rewarding health providers for the quantity of care they provide and toward rewarding quality. Empowering patients to play an active role in their healthcare should be a strategic and achievable goal of this important work,” Partnership chair Tony Coelho told Inside Health Policy.
As highlighted in an article in Inside Health Policy, "more than 60 patient groups and members of [PIPC] are asking HHS to make the Health Care Payment Learning and Action Network patient-centered by including patient groups in the network and using best practices from the FDA and Patient-Centered Outcomes Research Institute to solicit patient engagement with the initiative." While most patient stakeholders agree that paying for “value” rather than “volume” will result in better outcomes for patients, the shift to value-based payment holds significant implications for the patient-centeredness movement and the related issues of patient access and the physician-patient relationship. That’s why PIPC led this letter - to ensure that that patients have a seat at the table in determining how these new payment models are implemented.
“I look forward to collaborating with HHS to effectively bring the patient voice to their ambitious new framework to move our health care system away from rewarding health providers for the quantity of care they provide and toward rewarding quality. Empowering patients to play an active role in their healthcare should be a strategic and achievable goal of this important work,” Partnership chair Tony Coelho told Inside Health Policy. PIPC’s Andrew Rosenberg Named to PCORI Advisory Panel on Communication and Dissemination Research4/23/2015
The Patient-Centered Outcomes Research Institute (PCORI) has appointed PIPC’s Deputy Director, Andrew Rosenberg, JD, MP, to serve on the Institute’s new Advisory Panel on Communication and Dissemination Research (CDR). Rosenberg, who has over 20 years of experience as a healthcare and disability policy consultant, as well as a Capitol Hill staffer, brings a unique perspective to patient-centeredness – informed by his personal experience as a caregiver to his mother, who passed away after a protracted fight with a rare form of cancer.
PIPC Chairman Tony Coelho: "On behalf of millions of patients represented by our membership, PIPC urges MedPAC to expand the role of shared decision-making in Medicare, not reduce it. After hearing today’s recommendations related to bundling, however, we can’t help but harbor concerns that MedPAC is instead pursuing policies to reduce the role of patients by centralizing judgments about the comparative clinical value of treatments in a manner that puts a government agency between the doctor and the patient in determining an appropriate treatment regimen.
On March 9, 2015, the Government Accountability Office (GAO) released a review of PCORI’s activities as mandated by law. The Chairman of the Partnership to Improve Patient Care (PIPC), former Congressman Tony Coelho, stated: "PIPC remains vigilant in its efforts to ensure that PCORI’s work improves health care decision-making, and therefore is pleased that the GAO’s review of PCORI concluded that it is meeting its legislative mandate. Although the report acknowledged stakeholder concerns that PCORI’s research priorities are too broad and lack specificity, I am pleased that the GAO found that PCORI has been responsive to PIPC and others by better utilizing advisory panels to identify more specific research questions and topics....
The Government Accountability Office (GAO) released a report yesterday entitled, “Comparative Effectiveness Research: HHS Needs to Strengthen Dissemination and Data-Capacity-Building Efforts.” The Chairman of the Partnership to Improve Patient Care (PIPC), former Congressman Tony Coelho, provided the following response to the report’s findings and recommendations:
“PIPC is pleased that GAO has evaluated some of the key issues in HHS’ use of comparative effectiveness research (CER) funds, particularly related to dissemination of research findings. The report highlights some of the same issues that PIPC has identified with AHRQ's CER dissemination activities, and the critical need for the agency to establish a strategic plan, standards, and procedures to advance new, patient-centered approaches to CER dissemination. Today, the Patient-Centered Outcomes Research Institute (PCORI) submitted formal comments to Representatives Fred Upton (R-MI) and Diana DeGette (D-CO) of the House Energy and Commerce Committee. "[PCORI] applauds the efforts of the House Energy and Commerce Committee to forge a bipartisan approach to speeding development of effective new therapies and to involving patients in the process. PCORI has proven that involving patients leads to better research questions and better research post-approval. We agree that engaging patients will improve technology development research, and PCORI stands ready to help.” PCORI offered in their comments to be helpful in guiding the collection and methodological work around gathering patient data, advocated to support CER studies after treatments have been approved by the FDA, and advocated to build upon the foundation of PCORnet and its work to modernize clinical trials.
Tony Coelho: "Today, Health and Human Services Secretary Sylvia Burwell announced new goals intended to move the Medicare program further toward value-driven health care. In addition, Secretary Burwell unveiled a newly launched Health Care Payment Learning and Action Network to support those goals. The Partnership to Improve Patient Care (PIPC) shares the Secretary’s goal of achieving a more efficient, high-quality and patient-centered health care system.
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.
On November 19, 2014, PIPC held its 5th annual forum in Washington, DC. It is hard to believe that just 5 years ago we had Senator Baucus here talking to us about his vision for a patient-centered research institute that would support patient-centered care delivery. And today, the Patient-Centered Outcomes Research Institute (PCORI) is up and running. PCORI is changing the culture of research by engaging and including patients throughout the research process—from prioritizing research questions to engaging in research design and helping disseminate findings into practice. But as you know, and I know, it doesn’t stop there. For the investment in patient-centered outcomes research to have meaning, we must also have a health system that embraces the same principles of patient-centeredness.
PIPC Welcomed Congressional Staff and Expert Panel to Discuss Patient-Centered Health Care11/19/2014
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.
Today, the Medicare Payment Advisory Commission (MedPAC) convened for the first day of their March public meetings. Among their deliberations, the Commission considered developing payment policy to promote use of services based on clinical evidence. Discussion focused predominately on proposals to apply the defunct least costly alternative (LCA) policy to Medicare Part B drugs.
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."
The Center for American Progress (CAP) released a report today claiming that the use of Lucentis for the treatment of age-related macular degeneration (AMD) wastes $1 billion a year. If you speak with anyone who has watched a loved one lose their vision to AMD, you would not think that proper treatment of this disease is a “waste.” AMD is a progressive eye disease that predominantly affects older people. In my grandfather’s case, it robbed him of his ability to drive a car and also took away simple joys that kept him connected to the world like reading the newspaper, watching the nightly news and Turner Classic Movies, and even engaging in coffee conversations around the dinner table. 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.
On March 7, 2014, the Partnership to Improve Patient Care (PIPC) convened a group of its Steering Committee members, along with individuals serving on the Patient-Centered Outcomes Research Institute (PCORI) Patient Engagement Advisory Panel (PEAP) and PCORI staff. The purpose of the roundtable was to discuss how PCORI should evaluate its activities against a patient-centered framework using metrics that are most useful to patients.
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