Imagine if the answers to thirty questions could help transform the challenges that we see in the U.S. health care system into high-value, equitable solutions that advance the health and wellbeing of communities. Imagine if those thirty questions were bold enough to spur the redesign of a health system that could become not only equitable and high value but deeply attuned to the needs and experiences of those at the heart of the health care system—patients and families.
Imagine that those questions were designed not only to fill gaps in research but were destined to drive action. Imagine that they drew from shared definitions and a consensus-based framework, built upon a strong base of existing knowledge and the discovery of relevant new data and insights to inform choices and actions. Imagine that these thirty questions reflected things that matter most to patients and families—not just payers and policymakers—because they had emerged from a thoughtful collaboration between diverse researchers, expert patients and public voices, and leaders in health equity, health systems, health care quality, and social justice.
Over the past two years as one of approximately fifty contributors to AcademyHealth’s Research Agenda for High Value, Equitable Care funded by the Donaghue Foundation, I’ve witnessed an ambitious and dynamic collaborative effort to use these thirty questions to reimagine and co-create the roadmap for health services research to drive meaningful systems change. From the outset, I was ready to put my trust in a process that was co-chaired by two brilliant Consensus Group leaders—Donna Cryer, Founder of Global Liver Institute and Elizabeth McGlynn, Senior Vice President for Research & Quality Measurement and Executive Director of the Kaiser Permanente Center for Effectiveness & Safety Research—who brought both empathy and evidence to the table, grounded in lived experience and a record of research impact. The Consensus Group itself, including inspiring changemakers like Somava Saha, President and CEO of We in the World and recognized experts in patient- and family-centered care like Marie Abraham, Vice President, Programming and Publications at the Institute for Patient- and Family-Centered Care, reflected a commitment to elevating patient and community voices while developing the five drivers outlined below that would guide this process:
- A Fair and Just Culture of Whole-Person Health for All
- Care That is Accessible to All Patients
- Health System Centered Around Primary Care
- Adequate Health System Capacity to Deliver Care
- Health System Accountability for Outcomes
These drivers provided an easy-to-understand guiding framework, supported by a valuable virtual voting tool, which helped us to make sense of our task and center health equity in the generation, refinement, and prioritization of research questions.
You can read more about the five primary drivers, their secondary drivers, and the full set of research questions in this summary report.
Behind every question on the research agenda is an urgent need and beyond every answer is the opportunity to improve lives. Some of my “favorite” questions demonstrate how the agenda recognizes real-world challenges for patients and families—like this one: How can we move beyond accessibility as it relates to insurance status to studying how people actually access care, e.g., urban vs. rural populations, people’s sense of belonging or lack of belonging in accessing care? Other questions are long overdue, recognizing a barrier to progress in addressing the intersection of value and equity—like this one: What are effective strategies for encouraging health system quality/safety programs to integrate equity into existing frameworks (as opposed to seeing it as something extra)?
The Research Agenda for High Value, Equitable Care is a call to action. Imagine what could happen if funders, researchers, decisionmakers within health systems, and stakeholders who drive the behavior of health systems (such as federal and state policymakers and regulators, health plans and employers) answered that call! Imagine how this agenda could be taken up with a sense of urgency, complete with funding support for the necessary research infrastructure to accelerate our work!
Change begins with conversations. We can start conversations in our communities about the Research Agenda and its potential impact—reaching beyond the health services research community and across to leaders of medical associations, public policy institutions, civic organizations, and patient partners. We can discuss the agenda with grant-seekers, grant-makers, and funders. As researchers, if our work has been focused primarily on value (or quality or cost or equity), we can use the agenda to guide conversations about how value and equity are dual priorities that cannot be divorced from one another in the real world—and explain why the answers to the thirty questions matter to patients, researchers, and health systems alike. As advocates, we need to challenge decision-makers to seek out new research evidence on high-value, equitable care. The sooner that this research agenda comes to life, the sooner lives can be improved.