Background: Financial distress is a striking reality for many patients and families and has been exacerbated by the COVID pandemic. With every diagnosis, individuals confront direct costs for medical visits, medications, and treatment as well as indirect costs like transportation and expenses of getting needed care and support at home, all while deteriorating health circumstances may interfere with their ability to work, earn income, and maintain health insurance coverage. Total costs of care include medical and non-medical expenditures that can quickly overwhelm even the best-planned household budget. For limited-resourced populations, these unexpected expenses further compound health inequities and the economic challenges that individuals and families are already experiencing. Those most at risk are the very people that the Patient Advocate Foundation (PAF) serves, with 63% ranking financial distress intensified by illness as their number one concern and prioritizing financial viability as a critical goal of care.
Proposed Solution to the Problem: Mitigating financial distress is essential to combat the impact of escalating healthcare costs and social determinants of health (SDOH), and to curtail disparities. Increasing availability of financial and social needs navigation services is a central aspect of improving health and financial stability for many patients and families, especially those at highest risk in underserved communities and medical shortage areas. These patients reflect a “silent majority” of low-income and hard-to-reach populations often overlooked by researchers chronicling the long-term effects of a chronic or complex condition. PAF has provided skilled financial and social needs navigation supporting patients by phone for 25 years, positioning the organization to meet patients where they are in furthering data capture on cost burdens and impacts that reflect people’s actual lived experience.
Objectives: The project team’s primary objective is to co-develop a novel set of outcomes data, PCOR/CER priorities and project ideas that will advance rigorous, person-centered evidence demonstrating how healthcare settings can effectively identify and address financial and social needs to reduce distressing access and affordability burdens experienced by patients and families.
Activities: Patient Advocate Foundation will host a multi-stakeholder PCOR Research Insights Track as the major featured segment of its inaugural Patient Insight Institute Congress, “Galvanizing Partners on Access, Affordability and Equity”. This will involve three phases over 10 months: (1) three pre-workshop webinars, (2) an in-person workshop over 2.5 days in Washington, DC, and (3) a post-workshop evaluation webinar plus additional post-workshop outreach activities from February through May for communicating outcomes and next steps among a broad range of stakeholders. Over the course of the patient- and caregiver-guided series, participants will have opportunities to engage in activities emphasizing outcomes data, patient-centered outcomes research (PCOR)/comparative clinical effectiveness research (CER) and the patient role in research, co-develop a set of PCOR/CER priorities and project ideas exploring impact of financial distress, SDOH, and needs navigation relating to access, affordability, equity, and other identified areas.
Projected Outcomes and Outputs:
Short-term outcomes during the project period include:
Development of appropriate outcomes data options and research questions to drive PCOR/CER projects that consider the full range of outcomes data and increase underserved patient/caregiver engagement in identifying themes and topics aligned with outcomes of interest for these populations.
Medium-term outcomes (0-2 years post-project period) include:
Planning and prioritizing collaborative PCOR/CER that integrates diverse population insights, and furthers evidence and fill gaps to improve outcomes and advance equity.
Long-term outcomes (3+ years post-project period) include:
Continued engagement of lived experience expertise involving the team’s vast network of patients/caregivers and their community reach, building collaborative PCOR/CER partners and projects, and maintaining sustained stakeholder outreach.
Patient and Stakeholder Engagement Plan: PAF will involve patients/caregivers and multi-stakeholder representatives (including community and PCOR/CER researchers) in planning, promoting, executing, and evaluating the event activities as well as dissemination of the strategic plan for PCOR/CER and the convening summary. The project team’s existing patient/caregiver volunteer network is actively engaged in PAF programs and research projects. This is a diverse group of underserved patients. The project team has selected from this network four patients, in addition to involving two community-based practitioners and up to three PCOR/CER researchers to serve as lead advisors on the team informing all aspects of the project. Ongoing engagement with PAF patient and partner networks will ensure representativeness of advisors contributing perspectives from diverse backgrounds, conditions, and identified social needs.