November 14, 2023 — A special supplemental issue of Medical Care, sponsored by the Assistant Secretary for Planning and Evaluation (ASPE) in the U.S. Department of Health and Human Services, supports the growing recognition that economic factors often affect health outcomes, patient decision-making, and equity in health care. Medical Care, the official journal of the Medical Care Section of the American Public Health Association, is published in the Lippincott portfolio by Wolters Kluwer.
The scope of patient-centered outcomes research (PCOR) was expanded to include economic outcomes in the 2019 reauthorization of the Patient-Centered Outcomes Research Trust Fund. Congress recognized the importance of the "potential burdens and economic impacts of medical treatments, items, and services" in PCOR studies, Scott R. Smith, PhD and colleagues explain in an introduction to the supplement. Dr. Smith is the Director of the Division of Health Care Quality and Outcomes in the ASPE Office of Health Policy.
In response to the new mandate, ASPE and its partner agencies set the objective of "improving the availability, quality, and relevance of data on economic outcomes." The eleven invited papers in the special issue draw on themes that emerged from an ASPE-sponsored symposium.
Data on trade-offs in family decision-making about health care is a key need
One paper reports on telephone interviews with 59 commercially insured adults who had asthma and/or had a child with asthma, conducted by Alison A. Galbraith, MD, MPH, a health researcher at the Harvard Pilgrim Health Care Institute, and colleagues. They found participants reported paying for asthma care sometimes at the expense of their family's overall financial well-being.
Specifically, participants described making trade-offs between asthma care and other needs based on short-term needs versus longer-term financial health, needs of children over adults, acuity of the condition, effectiveness of treatment, and availability of lower-cost alternatives.
PCOR studies "should include family members and consider intrafamilial trade-offs," the authors conclude. Quantitative measurement "requires linking individual patient data into family units based on shared insurance, address, or birth records, or using household panel surveys."
Other implications of these findings, Dr. Galbraith's group says, are the need to measure nonmedical economic outcomes (e.g., unpaid bills, debt, depleted savings, missed housing payments, and food insecurity); measure out-of-pocket health care costs; use longitudinal micro-costing to capture temporary financial crises; and track economic well-being over longer periods.
Some of the other papers in the supplement discuss:
Collecting economic outcomes data on people with intellectual disabilities and cancer patients
Linking federally funded administrative and survey data sources to Medicare fee-for-service claims to increase the range of potential outcomes in PCOR studies
Coupling Medicare and Medicaid databases in North Carolina to facilitate evaluation of health equity
Developing a Medicare dataset for studying medication nonadherence due to cost
Linking a state-level all-payer claims database in Colorado with a cancer registry
Efforts to strengthen the National Patient-Centered Clinical Research Network (PCORnet)
A synthesis of the discussions at the symposium, including initial recommendations
Dr. Smith and his co-authors comment that although the articles in the special issue highlight the potential benefits from improved data capacity for economic outcomes in PCOR, "they also make it clear that much work needs to be done—particularly in supporting the paradigm shift within health economics research to include the perspectives of patients and families."
