Priorities on the Health Horizon: Informing PCORI's Strategic Plan (2022)
Chapter: 7 Patients Shaping the Health Horizon
7
PATIENTS SHAPING THE HEALTH HORIZON
In every discussion of the meeting series, anchoring focus and design on patients, families, and communities was emphasized as fundamental to reorienting the business of health care; deploying effective, affordable, and efficient practices; stewarding the collection and use of data to improve care; and ensuring equity for all. The predominant perspectives forging the design and implementation of systems of health and health care have, heretofore, been shaped by the vantage points of the knowledge, comfort levels, convenience, and reward systems of health care organizations and providers. Truly evolved and effective health systems will deploy success measures that start with the most fundamental needs and goals of those they serve.
Meeting participants were in agreement that bringing more attention to building trusting relationships and interactions, rather than just transactions in health care, is one way to drive and shape perspectives on value. Moreover, being more intentional about asking people what aspects of their health and health care matter most to them, and then incorporating these perspectives into broader assessments of performance and value, can help guide a research agenda for PCORI while raising awareness and building demand for care improvements. This broader imperative to understand “what matters” also entails bringing more voices to bear. PCORI engages with a sizable constituency of patients, families, and advocacy organizations. However, due to limited time, resources, capacity, or opportunity, many patients face barriers to participating in research, such as study inclusion criteria, cost or transportation constraints that preclude ability to complete research study visits, and fewer recruitment overtures extended to communities of color. Current systems are not structured to engage with the most vulnerable populations; thus, finding ways to raise the voices of the individuals facing the greatest challenges is essential for influencing policy, practice,
and all phases of research—design, study implementation, analysis, and dissemination (Carter-Edwards et al., 2021). In discussions, there was broad concurrence that until patients and families are at the center of all aspects of the health care delivery system and related research, the system will fall short. The embedding of patient-centeredness as the starting point for PCORI’s vision, mission, and program endows it with a leadership mantle of critical importance and advantage.
