Background: The field of complex care supports individuals whose physical, behavioral health, and social needs lead them to experience fragmented, inadequate, and often high-cost care. Due to wide programmatic variation and a dearth of rigorous research and evaluation efforts, it is difficult to discern where, for whom, and which of these efforts are most impactful, therefore exacerbating health disparities. Most recently, the COVID-19 pandemic widened existing gaps in care and the lack of coordination between systems for high-need individuals highlighted how health disparities are entrenched in the healthcare system. There is new momentum to support the development of a patient-centered research agenda to guide complex care efforts.
Proposed Solution to the Problem: To date, there has not been a coordinated complex care research effort that prioritizes the experiences and expertise of patients with complex needs. This project seeks to address this issue by developing a research agenda that will rigorously ground complex care in a patient-centered evidence base. Given the high degree of variation across complex care programs at present, the project will also use a comparative clinical effectiveness research (CER) framework to guide the work. The Center for Health Care Strategies (CHCS), a policy resource center based in New Jersey, will leverage its extensive relationships with complex care stakeholders across the United States, and engage patients, researchers, and clinical leaders in this project to address these research challenges and advance solutions.
Objectives: This project will bring together a broad cross-section of stakeholders to develop a patient-centered complex care research strategy in a rapid cycle learning approach. The primary objectives of this work are to convene patients, researchers, and clinical leaders to: (a) identify and prioritize key questions to drive a patient-centered complex care research agenda; (b) identify measurement domains that meaningfully reflect these priorities; and (c) put forward one or more approaches to implementing this research agenda in a way that ensures meaningful patient partnership. Comparing the effectiveness of multiple, varied interventions using common data sets and patient-centered outcomes measures will make it possible for future research in complex care to more effectively assess which strategies work best for whom.
Activities: The project will include: a four-month planning and research phase consisting of a literature review and 15-20 key informant interviews to assess how to focus the research agenda and a summative report that will guide remaining project activities; a seven-month workgroup phase involving teams of patients, clinicians, and researchers from at least 10 complex care organizations with a track record of patient engagement, tasked with developing research agenda recommendations; and a five-month research agenda development and publication phase. During this last phase, CHCS will synthesize stakeholder recommendations and produce a final report proposing a complex care research agenda, including key questions, core measurement domains, potential implementation mechanisms, and approaches for meaningfully partnering with patients in future research efforts, such as a practice-based research network.
Projected Outcomes and Outputs: This project’s short-term outcome will be to produce an initial report summarizing lessons from the planning and research phase and a final report outlining the proposed complex care research agenda. The medium-term outcome will be to increase the volume of patient-centered outcomes research and to standardize measure domains across complex care programs nationally. The long-term outcome is to expand the complex care evidence base and to guide ongoing complex care program implementation.
Patient and Stakeholder Engagement Plan: This work will actively engage patients and family members through three mechanisms: a patient and family advisory board; key informant interviews; and patient representation in 10 multi-stakeholder teams from participating complex care organizations under the workgroup phase. Across these mechanisms, the project team will seek ongoing guidance from patients and families to drive project activities and inform the recommendations for the research agenda. The patient and family advisory board and workgroup participants will collaborate across this entire effort, having joint power in the decision-making process. All patient and family member participants will be meaningfully compensated to reflect their vital contributions.
Project Collaborators: CHCS will partner with PFCCpartners to develop and guide the project’s patient engagement efforts; the National Center for Complex Health and Social Needs to advise on strategy, support workgroup recruitment, and ensure broad stakeholder engagement; and the Institute for Healthcare Improvement to support dissemination and implementation planning.