The PCORI Engagement Rubric: Promising Practices for Partnering in Research

We would like to thank the authors of the letter in response to the article "The PCORI Engagement Rubric: Promising Practices for Partnering in Research" for bringing up several important issues that went beyond the scope of the article. The rubric was a developed as a concrete, practical guide, in the early years of PCORI, in the absence of extensive data about most effective strategies to support engagement in research to help researchers and partners to think about the possibilities for engagement in their work.

The authors importantly mention the vital "pre-and-post engagement" phases of research. PCORI recognized very early in our existence that communities, the public, and researchers needed additional support and resources to fully participate in user driven research. The PCORI Board of Governors, Methodology Committee, and Patient Engagement Advisory Panel endorsed the development of best practices and several programs to support the Engagement Rubric and "engaged research." Recognizing that patients, communities, and researchers are often not well aligned in their interests, PCORI offers two programs to foster pre- and post- engagement activities. The Eugene Washington PCORI Engagement Award Program accepts applications from communities and researchers at all stages of the research continuum. The program is not meant to fund actual research but to establish the foundation and relationships and skills necessary to prioritize, conduct, and disseminate research. These awards will now also focus on supporting patient engagement in the uptake of findings for healthcare decision making. The Pipeline to Proposal Award Program is specifically targeted to the pre-engagement phase of research and is intended to create those relationships before the conduct of research. To date, PCORI has awarded 200 Eugene Washington Engagement Awards ($38.8 million) and 220 Pipeline to Proposal Awards ($4.9 million) for a total investment to date of over $43 million in these two programs.

PCORI also supports the public reporting of all PCORI funded research findings in accessible and comprehensible formats. This includes a requirement that all participants in PCORI funded studies be notified of the study's findings. PCORI funded research teams can also apply for dissemination and implementation funds to further spread the findings but must show community and public involvement in those efforts.

Enhancing the capacity of all participants in the research process is crucial and was a major reason for the development of the above mentioned awards. And as noted, while not the subject of this article, PCORI has developed a variety of mechanisms to support participants' capacities to engage, including training and mentoring to participate in merit and peer review; the creation of engagement officers to work directly with projects to support engagement; and the sharing of promising practices through webinars and conferences. To be sure much more can be done and PCORI is currently extensively mining its portfolio for practice-based tools and findings ripe for sharing with the field.

We agree with the author's points about ensuring broad stakeholder input in the design, execution and conduct, analysis, and dissemination of a research study is critical. The PCORI Engagement Rubric first began as the PCORI Patient Engagement Rubric and was broadened to reflect the diversity of important stakeholders. The input, particularly of patients and other stakeholders, on the Patient Engagement Advisory Panel was crucial to the refinement of the Rubric. There is more work to come as further refinement and revisions occur.

It has become clear to PCORI that both researchers and non- researchers need the support and tools to meaningfully collaborate on research. In addition to the programs mentioned above, PCORI is currently developing curriculums on Team Science and Patient-Centered Outcomes Research 101 to further enhance the potential for successful partnerships. PCORI will continue to be a leader and innovate on how we support and foster engaged research and we very much appreciate the author's thoughtful remarks.

The Rubric was developed as a tool to support the inclusion of patients and other stakeholders into the research process. At the time, a conceptual framework to prescribe action was not fully warranted. Currently we are developing the next iteration of the rubric moving towards a framework in how to support people in their interactions with individuals, organizations, institutions, and systems based on We agree with the authors that PCORI awardees' experiences offer valuable learning opportunities for others in the field. PCORI collects information from both awardees and partners about challenges to patient and stakeholder engagement and strategies awardees and partners use to overcome those challenges. These data are used to inform all of our processes, including the development of the new Team Science and Patient-Centered Outcomes Research 101 training. We also agree that PCORI has learnings that are valuable for the field. To date, PCORI has shared what it is has learned through publications (e.g., Forsythe, Ellis et al., JGIM 2015) and conference presentations (PCORI Annual Meeting 2016), and PCORI In Practice webinars and will continue to share in the future through additional manuscripts, presentations, webinars, the PCORI website, and other opportunities. We anticipate many near term activities that will enrich these findings and information to the field, and while we will certainly disseminate that information broadly, we also always encourage everyone to engage with PCORI through a variety of available mechanisms and welcome the type of feedback and dialogue the authors have provided.

Finally, PCORI greatly values the contributions of the Advisory Panel on Patient Engagement to the development of the Rubric. After discussion with the Chair of the Panel, it was determined that the contributions of the Panel to the Rubric and this manuscript were best reflected by listing the committee as a whole, because the work was reflective the group's collective effort. A full listing of the Advisory Panel members is available on PCORI's website: http://www.pcori.org/get-involved/join-advisory-panel/advisory-panel-patient-engagement/biographies-advisory-panel.

Competing interests: None declared