In December 2019, Congress reauthorized the Patient-Centered Outcomes Research Trust Fund (PCOR Trust Fund) through 2029. The reauthorization legislation also expanded research priorities to include intellectual and developmental disabilities and maternal mortality. Projects supported by the Trust Fund will also now consider “full range of outcomes data” to include the “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.”
With the renewed and expanded scope and ten-year time horizon for the PCOR Trust Fund as a whole, and the advances in health information technology and tools for interoperability over the past decade, the Office of the Assistant Secretary for Planning and Evaluation (ASPE) has embarked on a wide-ranging effort to update and modernize the OS-PCORTF strategic plan for the next decade. Seeking input from experts and stakeholders from both within and outside of the federal government, ASPE is working with its HHS partner organizations to update and further strengthen the contributions of the OS-PCORTF portfolio to meet future data infrastructure challenges. The new Strategic Plan is expected to be released in early 2022.
Consultations in Support of the Strategic Plan
In consideration of the broad community of producers and users of federal health data for patient-centered outcomes research, ASPE is engaged in both internal and external consultations. We invite public participation and comment, particularly in conjunction with the public workshops conducted by the NASEM study group.
Activities and work products of interest include:
- Initial Listening Session (2020): Challenges and Improvements for PCOR Data Infrastructure: Results from a Stakeholder Prioritization Activity ASPE sought to gather perspectives on challenges and improvements for PCOR data infrastructure from a diverse group of stakeholders—with a wide range of occupational backgrounds including policy, health care delivery, research and informatics—through an online prioritization activity.
- Research Data Network Report (2021): Patient Centered Outcomes Research Trends and Opportunities: Scan and Interviews with Key Informants Report: In support of the development of the OS-PCORTF Strategic Plan, ASPE sought to gather perspectives on PCOR data infrastructure from research networks. On behalf of ASPE, MITRE conducted an environmental scan of 15 research networks as well as 8 key informant interviews with representatives from networks particularly involved in PCOR. Respondents were asked about the challenges they face and potential opportunities to enhance access, quality, and scope of data for PCOR. The paper reports on insights drawn from both the scan and the interviews.
- National Academy of Sciences, Engineering and Medicine (NASEM) study group and public workshops: Building Data Capacity for Patient-Centered Outcomes Research: An Agenda for 2021 to 2030: This study will identify issues critical to building data capacity for patient-centered outcomes research (PCOR) and generating new evidence to inform health care decisions. The study will also incorporate considerations such as connecting with other data infrastructures in DHHS, other Federal departments, and the private sector; implementing new developments in health information technologies; facilitating consumer/patient data donation for research; and addressing national health priorities such as coronavirus disease and other use cases relevant to federal and state health programs.
Public workshops (virtual) were conducted in May and June 2021. Workshops were recorded. Reports from the workshops will be released by fall 2021; the final report from the study is expected in late 2021. The public is invited to provide comments on the workshop topics.
May 3, 2021: Building Data Capacity for Patient-Centered Outcomes Research: Looking Ahead at Data Needs - Workshop 1
May 24, 2021: Building Data Capacity for Patient-Centered Outcomes Research: Data Standards, Methods, and Policy - Workshop 2
June 14, 2021: Building Data Capacity for Patient-Centered Outcomes Research: A Comprehensive Ecosystem for PCOR - Workshop 3
Previous OS-PCORTF Strategic Planning Resources
- Building Data Capacity for Patient-Centered Outcomes Research in HHS: A Formative Evaluation of 2012-2016 Projects: This report is a formative evaluation of the OS-PCORTF portfolio of projects from 2012 to 2016. It summarizes achievements as well as considerations for future work to build data capacity for clinical comparative effectiveness research and patient-centered outcome research.