Building Data Capacity for Patient-Centered Outcomes Research Priorities for the Next Decade (2022) / Chapter Skim
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3 Priority Areas for the PCOR Data Infrastructure
3 Priority Areas for the PCOR Data Infrastructure
Pages 35-52
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From page 35... ...
data infrastructure that ultimately emerged as areas that could benefit if prioritized as part of ASPE's work over the next decade. The topics highlighted touch on many of the key elements of the framework currently used by ASPE to manage work related to the PCOR data infrastructure (see Figure 2-1)
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From page 36... ...
The committee also offers a first conclusion, which resulted from a recurring theme that emerged from the workshops organized by the committee and from the committee's subsequent deliberations integrating all the input. This conclusion, which serves as the basis of the new approach described above and represents a shift in perspective, could be transformative for both research and health care.
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From page 37... ...
The most recent reauthorization of the PCOR Trust Fund highlighted several new areas as priorities, including intellectual and developmental disabilities, maternal mortality, and health care cost as a consideration among the full range of outcomes data. The committee's first workshop focused on gathering input on emerging data needs and priorities from stakeholders, including researchers and representatives of patient organizations.
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From page 38... ...
This input echoed findings from the stakeholder prioritization activity1 and the most recent assessment of the portfolio of PCOR data infrastructure projects.2 CONCLUSION 3-2: A variety of data types were identified that are less likely to be available or easily accessible in the PCOR data infrastruc ture, including data on mortality, cost of care, social determinants of health, and disability status, as well as other characteristics of people associated with disparities in health outcomes. Increased attention to filling gaps in the availability of these data will enhance the utility of 1 https://aspe.hhs.gov/sites/default/files/migrated_legacy_files//197426/PCOR-Data-Infrastructure.
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From page 39... ...
Much of the focus of the PCOR data infrastructure to date has been on data generated in the course of patient care or in federally funded research studies. The increasing use of person-generated data from various sources was a recurring theme throughout the workshops (see Appendixes C and D in particular)
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CONCLUSION 3-5: Assembling a comprehensive longitudinal record of individuals' health journeys, which also includes the social context of their lives to the extent possible, would facilitate more far-reaching outcomes research. ADDRESSING FRAGMENTATION The health care system in the United States is fragmented, resulting in fragmented data, and the PCOR data infrastructure aspires to overcome some of this fragmentation.
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CONCLUSION 3-7: Collaboration among federal agencies and be tween federal agencies and other partners to address barriers that hinder data linkages, such as the limitations associated with the lack of unique health identifiers and patient or person matching, will improve the PCOR data infrastructure. The usefulness of data available for
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From page 42... ...
Much of the work aimed to facilitate the use of these data for research is focused on the development of standards for clinical data and on enhancing the interoperability of data systems. ASPE has focused on "data standards" as one of the building blocks, and the "standardized collection of standardized clinical data" as one of the pillars in the PCOR data infrastructure framework to improve the data infrastructure (Figure 2-1)
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CONCLUSION 3-11: Prioritizing projects that address fidelity or use of standards may convey greater value for the PCOR infrastructure than developing new standards. GOVERNING DATA ACCESS The way data are accessed, used, and shared for research is governed by privacy laws.
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The Blue Button initiative is an additional effort that facilitates data sharing, primarily by providing a mechanism that enables people to download their own health records and then potentially share them with others for a variety of purposes, including research.5 Data access and privacy considerations were a recurring theme during the committee's information-gathering activities (see especially Appendix C, Chapter 4, and Appendix D, Chapter 2)
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This includes a need for a critical review of current privacy legislation, an understanding of public perspectives, and the development of recommendations for revisions or reform that would be applicable to the protection of health data in the Internet-enabled world, with a focus on preventing misuses of the data. CONCLUSION 3-12: This is an opportune time to revisit and update the legislation and rules governing data privacy and the sharing of data for research.
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Collaborations with patient organizations can help in addressing patient concerns about participating in research studies and in building patient engagement, which are both important for achieving a patient-centered approach. Researchers echoed the need to make PCOR data more widely available to empower patients and communities to use this information.
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PROJECT SELECTION TO SUPPORT THE DATA INFRASTRUCTURE FRAMEWORK While previous sections discussed specific aspects of the PCOR data infrastructure that could benefit from additional work in the years ahead, this section offers a few general, big-picture observations on project selection. ASPE sets priorities for the OS-PCORTF with assistance primarily from a Leadership Council that consists of HHS agency heads and their designees.
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From page 48... ...
are also con tinuing to present new opportunities for enhancing the data infrastructure. Leaders from patient organizations that participated in the workshops noted that PCOR data are often not focused on the types of issues that are truly important to people and that would enable them to find answers to the questions they tend to have about their treatment options and potential outcomes (see Appendix B, Chapter 3)
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CONCLUSION 3-20: The development of the data infrastructure might be enhanced and critical gaps could be filled by proactively iden tifying necessary projects in areas that examine the overall framework for the PCOR data infrastructure, particularly in the context of broader issues such as the balance between privacy and increased data use. The discussions with stakeholders and the review of prior evaluations led the committee to identify two general categories of projects that may be particularly worthwhile to pursue because of a high expected return on the investment.
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UPDATING THE DATA INFRASTRUCTURE FRAMEWORK Building on what was learned from the workshop, and on the basis of the committee's further deliberations, this section offers a few additional observations focused on strengthening the overall framework for building the data infrastructure in the coming years. As discussed in Chapter 2, Figure 2-1 is a visual representation of the framework ASPE has been u sing for the PCOR data infrastructure to operationalize the mandate for the OS-PCORTF and guide decision making.
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Reducing "voltage drops" at each step in the framework can contribute to realizing the potential of the PCOR data infrastructure. The most challenging need to address is likely between the development of insights and improving health, as shown on the left-hand side of the figure, which can be interpreted broadly to include informing policies, regulations, laws, and other mechanisms that drive improvements.
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is always a challenging task, but obtaining additional feedback from stakeholders and building a strong feedback loop that attempts to ascertain what types of evidence have been generated as a result of the work could provide additional insights and strengthen the overall framework for the data capacity infrastructure. CONCLUSION 3-27: A tighter feedback loop with the external end users and developers of evidence would enhance the value of data infra structure investments.
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