The fragmented nature of the health care system in the United States means that health-related data are also often fragmented. Data silos are a major barrier both to research and to increasing the usefulness of the information available for decision-making that could improve health more broadly. The National Academies of Sciences, Engineering, and Medicine released a consensus study report aimed at providing input to the Office of the Assistant Secretary for Planning and Evaluation (ASPE) for their work coordinating the Office of the Secretary Patient-Centered Outcomes Research Trust Fund portfolio of investments focused on enhancing the data infrastructure that supports patient-centered outcomes research (PCOR).
PCOR focuses on producing scientific evidence on the effectiveness of prevention and treatment to inform the health care decisions of stakeholders, such as patients, families, and health care providers, while taking into consideration the preferences, values, and questions patients face when making health care choices. The data that exist for PCOR are collected and curated in a variety of databases across the health system. These databases are typically constructed to serve their primary purposes and do not prioritize the ability to link with other databases. Other relevant data, such as data on social determinants of health (SDOH), sometimes exist only outside of these databases or do not exist at all. The PCOR data infrastructure is designed to overcome some of this fragmentation by integrating data sources and functionalities to support the research.
The report from the National Academies summarized the committee’s findings and conclusions in the areas that could benefit from being prioritized as part of ASPE’s work over the next decade. The report also offered input on how to enhance the overall framework for building the data infrastructure over the coming years.
ASPE’s recently released strategic plan built on the committee’s report in several key areas. The report highlighted the importance of taking a holistic view of an individual’s health, rather than limiting the perspective, and the data acquired, to that captured about an individual in a clinical setting. The committee concluded that broadening the focus of the PCOR data infrastructure from patient-centered to person-centered would enhance the goals and data requirements needed to conduct meaningful outcomes research. Everything that has been learned about the contributions of SDOH indicates that ignoring the health impacts of where individuals live, work, and play impedes meaningful understanding of important intervention targets to improve health.
The report also discussed the importance of continued work on expanding data linkages, including the potential usefulness of linkages that would enable a longitudinal perspective on a person’s journey through the health care system and, more broadly, through life events that are relevant to health. The report also discussed the broader limitations of the data infrastructure that make accomplishing this goal challenging.
The report (and the appendices that summarized the workshops organized by the committee) further highlighted technological and methodological advances that are available for PCOR and identified areas that could benefit from additional attention in the coming years to facilitate research. The committee emphasized the need for transparency and for consideration of related scientific principles, such as reproducibility of the data and methods used for PCOR. These considerations are important for all types of data and analysis, but the increasing use of tools such as machine learning and natural language processing raised the question of whether best practices can ensure that these tools do not introduce biases that hardwire current disparities in care delivery (e.g., algorithmic bias).
Building data capacity for PCOR is a complex task with additional work needed in a variety of areas. The projects funded through the Office of the Secretary PCOR Trust Fund are well targeted toward further developing and enhancing key aspects of the PCOR data infrastructure, but that infrastructure can be further enhanced to reach its full potential. The committee concluded that additional feedback and metrics to understand how the uses of the PCOR data are shaping knowledge, practice, and policy is essential to meaningfully drive investments in the data infrastructure.
More information about the work of the National Academies committee is available here.