A special supplemental issue of Medical Care supports the growing recognition that patient economic outcomes matter in health care. Sponsored by the Assistant Secretary for Planning and Evaluation (ASPE) in the U.S. Department of Health and Human Services, the issue highlights studies that explore the relationship between economic outcomes, patient care, health outcomes and equity.
Patient-centered outcomes research (PCOR) includes economic outcomes 
In 2019, reauthorization of the Patient-Centered Outcomes Research Trust Fund involved an expansion of PCOR to focus on economic outcomes. 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, ASPE and partner agencies focused on “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.”
The results support measuring patient economic outcomes like unpaid bills, depleted savings, debt, and food insecurity). Additionally, the authors suggest measuring out-of-pocket health care costs and tracking economic well-being over longer periods.
Other papers in the supplement
The supplement includes a range of papers on related topics, including:
- 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 offers new outcomes for 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 co-authors comment that the special issue highlights the value of improved data for studying patient economic outcomes. They note, however, the value of “supporting the paradigm shift within health economics research to include the perspectives of patients and families.”
Gregory Stevens