The Partnership to Improve Patient Care (PIPC) held a roundtable discussion on May 6, 2016 to discuss the challenges of value frameworks in determining patient access. For the past several years, there has been a shift to a health care system based on value, rather than volume. Amidst this shift, “value to whom” has been a consistent question, with payers, providers, patients and other stakeholders defining “value” from different vantage points. PIPC has continuously advocated that value should first and foremost be considered through the lens of patients and people with disabilities who are the ultimate beneficiaries of health care.
The Partnership to Improve Patient Care (PIPC) and the Cancer Support Community (CSC) convened a roundtable on July 8, 2015 on “Patient-Driven Health Care and Evidence in Oncology: Setting an Agenda.” The roundtable participants represented patient organizations serving cancer patients, as well as a representative from the Patient-Centered Outcomes Research Institute (PCORI). Roundtable participants discussed the outcomes that matter to oncology patients and policies that would support high-quality, patient-driven cancer care.
There is an abundance of evidence that indicates patients who are active in their own healthcare decisions have better outcomes at lower costs. As such, steps to increase patient engagement in their health care represent a significant opportunity for policy-makers. Yet, patients often find themselves feeling disempowered and hopeless when facing a healthcare decision because the current United States (U.S.) health care system does not provide adequate tools to be effectively engaged. The shift to so-called “value-based” or alternative payment models provides an important opportunity to improve patient engagement. However, achieving this opportunity requires understanding what patients value and structuring new payment models in ways that engage patients based on their values.
On June 19, 2014, the Partnership to Improve Patient Care (PIPC) and Families USA co-hosted a roundtable discussion on “Accountability for Patient Engagement in Research and Dissemination.” The purpose was to move beyond a discussion of the points of engagement, and focus on who is accountable for patient engagement, and what makes engagement meaningful. It was noted, and agreed by participants, that a goal of patient engagement is real patient empowerment and activation in their health care. A focus of the discussion was implementation of the Patient-Centered Outcomes Research Institute (PCORI), which is creating a precedent for patient engagement practices in research that could be modeled by other entities.
On May 8, 2014, the Partnership to Improve Patient Care (PIPC) convened a Roundtable of experts in the diagnosis, treatment, and care of patients with hepatitis B (HBV) and C (HCV): i.e., patient advocates, health care providers (nurse practitioners, physician specialists including family physicians, gastroenterology, infectious disease, and oncology), representatives from the Department of Health and Human Services (HHS), and the Patient-Centered Outcomes Research Institute (PCORI), all of whom participated individually and/or on behalf of their representative organizations, to discuss current challenges to and potential solutions for the appropriate dissemination and implementation of clinical evidence. Additionally, this group focused on the value and clinical benefits of ensuring patients and providers have access to reliable, relevant, current data and information.
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. PIPC Chairman Tony Coelho opened the meeting by emphasizing the importance of PCORI having a patient constituency, and the potential for PCORI’s evaluation framework to be a tool for organizing patients in support of PCORI’s patient-centered research model.
On November 21, 2013 the Partnership to Improve Patient Care (PIPC) and the American Academy of Neurology (AAN) jointly hosted a Movement Disorders focused Roundtable on issues specific to the dissemination and implementation agenda of the Patient-Centered Outcomes Research Institute (PCORI). A PCORI representative briefed attending participants (those signing onto this summary and recommendations listed in “Appendix A”) on the Institute’s current thinking and approaches related to its Dissemination and Implementation Action Plan, and participants were offered the opportunity to both comment and ask questions. Subsequently, participants engaged in a wide ranging discussion intended to surface and identify consensus recommendations for both PCORI and the AAN. A summary of the Roundtable and recommendations are available below.
On November 6, 2013 the Partnership to Improve Patient Care (PIPC) and the American Gastroenterological Association (AGA) convened a Roundtable Discussion of patient advocacy and provider organizations to discuss the development of a Dissemination and Implementation Action Plan by the Patient Centered Outcomes Research Institute (PCORI). The goal of the Roundtable was to identify and articulate consensus recommendations to guide PCORI as it initiates this next phase of its research agenda.
On Monday, June 10, 2013, the Partnership to Improve Patient Care (PIPC) and the American Association of People with Disabilities (AAPD) convened a roundtable representing people with disabilities in an effort to provide PCORI with consensus recommendations to develop research contracts beneficial to the disability community. PCORI researchers were present to outline the parameters for the research projects that PCORI can fund, as well as the process for working with PCORI
Since the creation of PCORI, it has been clear to PIPC that it would be crucial for patients and physicians to work together in support of an agenda that is responsive to our shared needs at the point of treatment decision-making. To that end, PIPC supported a series of roundtables with leading physician and patient organizations beginning in early 2012 to identify, discuss, and define potential next steps in key areas of PCORI’s work. Leading medical societies that serve on PIPC’s Steering Committee – such as the American College of Cardiology and American Association of Neurological Surgeons – were instrumental in helping organize several of these roundtables