Increasingly, health services researchers are embracing collaborative or participatory research models in their work (see Dr. Carolyn Clancy’s blog post on New Opportunities for HSR). This increased effort and focus on engaging patients and other stakeholders in the research process is reflected in the prominent representation of patient-centered outcomes research (PCOR) at the 2013 Annual Research Meeting, including multiple panel presentations, methods workshops, and policy roundtables. A full list of PCOR-related sessions can be found here, and as you can imagine, following all of these sessions kept us very busy! Several highlights are listed below:

    • Developing a Program of Comparative Effectiveness Research at the Patient-Centered Outcomes Research Institute This session offered ARM attendees an opportunity to learn about funding opportunities at PCORI, which has committed more than $159 million to PCOR thus far, as well as to ask questions of the Institute’s leadership. Dr. Joe Selby, Executive Director at PCORI, described the different funding mechanisms for investigator- and patient-initiated research and how the Institute is working to encourage research that matters to patients. In addition, he emphasized that patient and other stakeholder engagement in research is required for PCORI funding, and that more than half of the peer reviewers of the funding applications are patients. Program directors representing several of PCORI’s national priorities for research then discussed how their programs are approaching funding opportunities. Dr. Romana Hasnain-Wynia, Program Director of the Addressing Disparities priority area, explained how research applications for this priority area should focus on how to improve health disparities, rather than measuring disparities alone. Dr. David Hickam, Program Director for the Assessment of Prevention, Diagnosis, and Treatment Options priority area, recommended that research applications in this priority area offer substantial potential for results to change clinical practice. Similarly, Dr. Chad Boult, Program Director for the Improving Healthcare Systems priority area, shared that this program area is looking for the "what if" proposals that can realistically transform health care. For more information, see the slides from this panel and the PCORI funding page.
  • Evaluating Engagement in Patient-Centered Outcomes Research Panelists discussed the existing evidence on stakeholder engagement in patient-centered research, presented new perspectives, and provided novel ideas for evaluating and enhancing it. Notably, Dr. Lori Frank, Director of Engagement Research at PCORI, presented a conceptual model for PCOR that outlines the principles, foundational elements, actions, and outcomes that comprise PCOR. Subsequently, Alison Rein, Senior Director at AcademyHealth, presented an evaluative framework for meaningful patient engagement in research that intends to further specify and clarify what it means to conduct PCOR.
  • Methods Pilot Projects: Learning from Engagement In this panel, attendees heard from PCORI methods pilot project investigators who are engaging patients and other stakeholders in their research. Throughout the presentations, panelists emphasized that researchers need to be open to shared decision-making and to collaboration with patients as partners in the research process. For example, Dr. Katherine Bevans, The Children’s Hospital of Philadelphia, shared that her research team includes “patient-scientists” as partners in the research endeavor, as well as soliciting input from two advisory boards comprised of patients and researchers. Dr. Tiffany Haynes, University of Arkansas for Medical Sciences, also spoke about the importance of a diverse research team and noted that it is important to “not just engage the grassroots, but also the grass itself and the grass tops,” which signify different groups of stakeholders. For more information about the pilot projects’ work and to view their abstracts, click here.
  • Selecting Patient-Reported Outcome Measures for Quality Measurement Given the increased interest and uptake of patient-reported outcomes (PROs) by health services researchers, panelists for this session described an optimistic future for PROs, especially when they are used for quality improvement and care coordination. While PROs offer many opportunities to learn about patients’ experiences, Dr. Kathleen Lohr, RTI International, noted that more research is needed to understand how language barriers, diverse ethnicities and health literacy affect reporting. Similarly, Dr. Kitty Chan, Johns Hopkins Bloomberg School of Public Health, discussed her research in understanding external factors that can introduce measurement biases for different population characteristics (e.g. age, race, gender) in PROs.
  • 2013 Rigor and Relevance: Using the PCORI Methodology Standards In partnership with the PCORI Methodology Committee and the Center for Medical Technology Policy (CMTP), AcademyHealth convened a mini-course on the PCORI Methodology Standards. This mini-course was well attended, which demonstrated the interest from the health services research community in learning about how to utilize the PCORI methodology standards for PCOR. Three standards were highlighted in breakout sessions: the heterogeneity of treatment effects, standards for adaptive and bayesian trial design, and standards for data registries. These smaller-sized workshops allowed for group discussions, review of case studies, and deeper “dives” into the standards. To view the introductory webinar on the PCORI methodology standards included as part of the course, please click here. Other materials from this course will be made available online. For more information, contact Marianne Hamilton Lopez.
With the wide range of PCOR-related sessions, ARM attendees had a chance to hear from other researchers engaged in PCOR, share lessons learned for engaging patients and other stakeholders in research, and learn about the PCORI methodology standards. We encourage you to check the AcademyHealth website in the coming weeks for additional materials from the 2013 Annual Research Meeting.
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