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.​

​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 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.