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PREPUBLICATION COPY, Uncorrected Proofs Summary The Office of the Assistant Secretary for Planning and Evaluation (ASPE), in partnership with other agencies and divisions of the United States Department of Health and Human Services (HHS), coordinates a portfolio of projects that build data capacity for conducting patient- centered outcomes research (PCOR). PCOR focuses on producing scientific evidence on the effectiveness of prevention and treatment options to inform the health care decisions of patients, families, and health care providers, taking into consideration the preferences, values, and questions patients face when making health care choices. The data infrastructure includes data sources and functionalities that support the research. Major building blocks are the services, standards, policies, and governance that enable the use of the data. ASPE asked the National Academies to appoint a consensus study committee to identify issues critical to the continued development of the data infrastructure for PCOR. The committeeâs work will contribute to ASPEâs development of a strategic plan that will guide their work related to PCOR data capacity over the next decade. As part of its information gathering activities, the committee organized three workshops to collect input from stakeholders on the PCOR data infrastructure. This report, the first in a series of three interim reports, summarizes the discussion and committee conclusions from the first workshop, focused on looking ahead at data user needs over the next decade. The workshop included representatives of patient groups with a wide reach and researchers with broad research interests as well as an understanding of the PCOR infrastructure. The high-level conclusions included in this interim report are based primarily on the input collected as part of the workshop, background documentation received from ASPE and other public sources, and the committee membersâ synthesis and expert judgment regarding the input received. As an interim report based on one in a series of information-gathering activities, the scope of this report is narrowly focused on a subset of key topics relevant to the committeeâs charge. The conclusions reached by the committee are, at this stage, fairly high-level. After completing all of its information gathering activities, which include but are not limited to the three workshops, the committee will also issue a final report, containing the studyâs overall findings and conclusions. FUNDAMENTAL DATA CHALLENGES Most data that are available for PCOR are collected for clinical care, billing, or other nonresearch purposes. This presents a fundamental challenge to answering critical questions, but the workshop also made it clear that opportunities exist for making the data infrastructure more suitable for answering questions of interest, so long as the potential uses of the data are carefully considered. CONCLUSION 2-2: The data available for patient-centered outcomes research are often collected for reasons other than research, which limits their usefulness. 1
PREPUBLICATION COPY, Uncorrected Proofs Opportunities exist for increasing the utility of the data infrastructure by carefully considering the multiple uses to which the data might be applied. Researchers experience barriers that limit their ability to access data available in databases, which range from databases that can be considered a part of the PCOR data infrastructure to those owned by private companies. A focus on facilitating and simplifying access could further enhance the usefulness of PCOR data. CONCLUSION 4-3: Researchers encounter substantial barriers to accessing existing data for patient-centered outcomes research. Facilitating and simplifying data access could further increase the usefulness of data for research. DATA FRAGMENTATION The data that exist for PCOR are collected and curated in a variety of databases across a fragmented health system. These databases are typically constructed as stand-alone entities for particular administrative or other uses, and without factoring in potential linkages with other databases. The workshop identified these data silos as a major barrier, both to understanding the role of social determinants of health and to research more broadly. A focus on facilitating data linkages could greatly increase the usefulness of the information available. CONCLUSION 2-3: Existing data on the social determinants of health are found in a variety of databases. Barriers to linking across these data silos represent a major challenge to understanding how social determinants of health affect health outcomes. CONCLUSION 4-2: The data available for patient-centered outcomes research are fragmented across a variety of databases. Expanding data linkages could greatly increase the usefulness of these data for research. HEALTH DISPARITIES A theme that emerged from the workshop was the magnitude of the gaps in the data that are available to better understand and address health disparities. Health disparities represent an evolving and expanding area of research, with corresponding data needs. Limitations exist for a variety of social determinants of health data and for a range of populations. Improving the data available for understanding and addressing these disparities would require data strategies that prioritize this goal. CONCLUSION 2-1: Health disparities can occur across a broad range of characteristics and populations. Data limitations affect the ability to identify and understand these disparities in many areas. Data for specific populations are sometimes unavailable or are not representative. In other cases, the data might not be timely or might have other gaps that make it difficult to understand the impact of changes over long periods of time. 2
PREPUBLICATION COPY, Uncorrected Proofs CONCLUSION 2-5: Prioritizing and improving the collection of data can lead to a better understanding of health disparities and to potential solutions for reducing disparities. The workshop also made it clear that the data available do not capture complexities that are necessary to understand how peopleâs characteristics and experiences influence health outcomes. Speakers at the workshop identified several potential ways of capturing data that reflect these complexities, emphasizing the need to build flexibility into the data collection systems to allow them to adapt to evolving terminologies and technologies for capturing and processing data. This is particularly important for social determinants of health, an area that may be rapidly changing. CONCLUSION 2-4: Existing data do not capture the richness of peopleâs characteristics and experiences. While such limitations are to be expected, opportunities exist for capturing data that are better able to characterize these complexities. A robust data infrastructure builds on the strengths of what is available today and has the flexibility to adapt, both as measures and terminologies become obsolete and as new technologies emerge. PATIENT DATA NEEDS AND ENGAGEMENT Too often, the data available for PCOR are not focused on the issues that are truly important to patients and that would enable them to find answers to their questions about treatment options and potential outcomes. Information about the cost implications of medical care is an area in which data are particularly limited, because it has only recently been included in the statutory scope of PCOR. CONCLUSION 3-1: The patient-centered outcomes research data infrastructure has not reached its full potential to provide data that can answer questions that matter to patients and enable them to make informed decisions. Information about the cost of care was highlighted among the types of data that would be particularly useful. Even for the many areas where data on patient-centered outcomes are available, the information is rarely available in ways that would make it truly accessible to patients for decision-making purposes. More widespread dissemination of information that is easy to use could increase the engagement of patients and communities and could complement research efforts to improve health outcomes. CONCLUSION 3-2: Dissemination and translation of the research findings could be greatly enhanced by using forms of communication that are relevant to those outside of the research community. CONCLUSION 4-4: Making the data more visible and more widely accessible could enable patients and communities to use the information in ways that reduce health disparities, complementing research efforts in this area. 3
PREPUBLICATION COPY, Uncorrected Proofs Both patient groups and researchers highlighted the clear need for more data on the total cost of care. CONCLUSION 4-5: Data needs related to the total cost of care and a better understanding of cost considerations are areas that deserve more attention. FOCUS ON THE PERSON AS A WHOLE The input received from workshop participants made it clear that limiting the focus to the patient limits not only thinking about the data but also the outcomes and impacts that matter to people in general. CONCLUSION 4-1: Broadening the focus from the patient to the person more generally would enable a more comprehensive approach to the data infrastructure and a better understanding of the outcomes and impacts that matter to people. 4