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Building Data Capacity to Study Economic Outcomes in Patient-Centered Outcomes Research

As part of the 2019 reauthorization of the Patient-Centered Outcomes Research Trust Fund, Congress expanded the scope of outcomes that should be considered for inclusion in patient-centered outcomes research (PCOR) to include “potential burdens and economic impacts of the utilization of medical treatments, items, and services on different stakeholders and decision-makers respectively. These potential burdens and economic impacts include medical out-of-pocket costs, including health plan benefit and formulary design, non-medical costs to the patient and family, including caregiving, effects on future costs of care, workplace productivity and absenteeism, and healthcare utilization.”

To support this expanded scope of outcomes in PCOR studies, ASPE has undertaken a number of efforts, consistent with Goal 4 of the OS-PCORTF Strategic Plan (2020-2029), which focuses on addressing data capacity limitations to support a more comprehensive view of health outcomes, identify and address disparities, and examine economic outcomes. Read the OS-PCORTF Strategic Plan (2020-2029).

Listed below are the OS-PCORTF publications, data products, and other activities related to building data capacity to study economic outcomes in patient-centered outcomes research (displayed in reverse chronological order).

Medical Care Special Issue

Medical Care Special Issue: Building Data Capacity to Study Economic Outcomes for Patient-Centered Outcomes Research
December 2023

A special issue of Medical Care draws on the themes that emerged from a December 2022 symposium, featuring articles that highlight critical challenges and important opportunities in building PCOR data capacity on economic outcomes.

All articles in the special issue are open access. To read the articles, click on the linked titles below.


Economic Outcomes in Patient-Centered Outcomes Research: A Paradigm Shift
Smith, Scott R.; Evans, Emily L.; Brown, Derek S.; Reynolds, Kerry A.; Timbie, Justin W.

Measurement and Data Collection

Using Address Data to Track Household Financial Burden of Disease
Nicholas, Lauren H.

“You Have to Rob Peter to Pay Paul so Your Kid can Breathe”: Using Qualitative Methods to Characterize Trade-offs and Economic Impact of Asthma Care Costs
Galbraith, Alison A.; Faugno, Elena; Cripps, Lauren A.; Pryzwara, Kathryn M.; Wright, Davene R.; Gilkey, Melissa B.

Determining Economic Factors that Matter to People with Intellectual and Developmental Disabilities and their Caregivers: A Process Framework
Palatucci, John S.; Chakravarty, Sujoy; Kratchman, Amy L.; Harris, Jill; Pizzi, Laura; Coffield, Carrie; Ibitamuno, Grace; Spitalnik, Deborah, M.

Enhancing Cancer Economic Data Resources: The Interagency Consortium to Promote Health Economics Research on Cancer (HEROiC)
Halpern, Michael T.; Ekwueme, Donatus U.; Yabroff, K. Robin.

Cancer-Related Financial Hardship Screening as Part of Practice Transformation
Williams, Courtney, P.; Liang, Margaret I.; Rocque, Gabrielle B.; Gidwani, Risha; Caston, Nicole E.; Pisu, Maria.

Data Linkage

Medicare Data Linkages for Conducting Patient-Centered Outcomes Research on Economic Outcomes
Brown, Derek S.; Srinivasan, Mithuna; Zott, Courtney; Wilson, Kala; Dullabh, Prashila; Smith, Scott R.

Linking Medicare-Medicaid Claims for Patient-Centered Outcomes Research among Dual-Eligible Beneficiaries
Jones, Kelley A.; Clark, Amy G.; Greiner, Melissa A.; Sandoe, Emma; Giri, Abhigya; Hammill, Bradley G.; Van Houtven, Courtney H.; Higgins, Aparna; Kaufman, Brystana.

Developing an Integrated Longitudinal Dataset for Patient-Centered Outcome Measures in Cost-Related Medication Non-Adherence
Zhang, James X.; Meltzer, David O.

Building Data Infrastructure for Disease-Focused Health Economics Research
Bradley, Cathy J.; Liang Rifei; Lindrooth, Richard C.; Sabik, Lindsay M.; Perraillon, Marcelo C.

Avenues for Strengthening PCORnet’s Capacity to Advance Patient-Centered Economic Outcomes in Patient-Centered Outcomes Research (PCOR)
Waitman, L. Russell; Bailey, L. Charles; Becich, Michael J.; Chung-Bridges, Katherine; Dusetzina, Stacie B.; Espino, J.; Hogan, William R.; Kaushal, Rainu; McClay, James C.; Merritt, J. Greg; Rothman, Russell L.; Shenkman, Elizabeth A.; Song, Xing; Nauman, Elizabeth.

Stakeholder Perspectives

Advancing Data Capacity for Economic Outcomes in Patient-Centered Outcomes Research: Challenges & Opportunities
Timbie, Justin W.; Reynolds, Kerry A.; Evans, Emily L.; Brown, Derek S.; Cohen, Joel W.; Darien, Gwen; DeVoe, Jennifer E.; Grosse, Scott D.; Holve, Erin; Meltzer, David O.; Merritt, J. Greg; Neumann, Peter J.; Yabroff, K. Robin; Smith, Scott R.


Symposium: Building Data Capacity to Study Economic Outcomes for Patient-Centered Outcomes Research
December 2022

Bringing together multiple perspectives, this symposium served as a scientific forum for discussion of current efforts, challenges, and opportunities related to improving the collection, linkage, and analysis of economic data for PCOR studies.

Video recordings of the symposium are available via YouTube. To view the sessions, click the links below:

  • Part 1: Opening remarks and panel session on data capture
  • Part 2: Panel session on data linkage
  • Part 3: Panel session on data measurement
  • Part 4: Panel session on empirical studies and closing remarks
People at a symposium


Older lady and her caretaker speaking with a doctor

Report: Medicare Data Linkages for Conducting Patient-Centered Outcomes Research on Economic Outcomes
October 2022

Building on prior work, this report identifies federally funded data linkages that may facilitate the inclusion of economic outcomes for Medicare fee-for-services (FFS) beneficiaries in PCOR studies.

Read the Report on Medicare Data Linkages for PCOR Studies

Report: Federal Data for Conducting Patient-Centered Outcomes Research on Economic Outcomes
September 2021

This report assesses the current landscape of federal and federally funded health care data relevant to economic outcomes in PCOR studies and identifies opportunities to address gaps in data capacity.

Read the Report on Federal Economic Outcomes Data for PCOR Studies

Data files