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NHII 03 Research and Population Health

This presentation discusses the current challenges and desired state of research and population health data, including the lack of data linkages, ownership issues, and minimal standardization. Short-term recommendations focus on adopting a complex adaptive system approach, establishing patient characteristic linker variables, establishing a national registry of data definitions, and incentivizing data providers to conform to NHII standards. Medium-term recommendations include developing procedures to communicate research knowledge to the public and securing funding from state/local governments and the private sector. The future status of research and population health includes increased data exchange, shortened research cycles, and efficient delivery of population-based insights to consumers.

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NHII 03 Research and Population Health

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  1. Shawn Murphy, MD, Ph.D. Massachusetts General Hospital NHII 03 Research and Population Health This presentation does not necessarily reflect the views of the U.S. Government or the institution of any participants

  2. Research & Population Health Current Status • Clinical research - unable to use data from medical record. • Population health data - minimal commonality between data sets. • Health services research - lack clinical detail. • Unable to easily link people from disparate data sources. • Ownership issues impair data sharing.

  3. Research & Population Health Desired State • Multiple purpose data use • Research and population health data standardization • Reliable means of linking people in various data sets • Support for secure access and information exchange • Support for various ownership models of data

  4. Research & Population Health Short Term Recommendation 1 • Adopt a complex adaptive system approach to support data exchange and interoperability in research and population health. Define the key elements to allow for this kind of approach. • HL7

  5. Research & Population Health Short Term Recommendation 2 • Establish standard set of patient characteristic linker variables and accompanying logical methods for matching patients for research and population health studies. Match can tolerate <100% accuracy. • AHRQ, NIST, CDC

  6. Research & Population Health Short Term Recommendation 3 • Establish national registry of data definitions, data sets, and metadata for research and population health. • HL7, LOINC, NLM (UMLS), NIH

  7. Research & Population Health Short Term Recommendation 4 • Develop incentives for data providers to conform to NHII standards and make data available for research and population health (e.g. Make participation required to receive funding, distribute direct financial incentives, allow equal access to data if they contribute). • NIH

  8. Research & Population Health Short Term Recommendation 5 • Develop communications and marketing plans to facilitate alliances in the research and population health communities • AHRQ, CDC, ASPE/NHII

  9. Research & Population Health Medium Term Recommendation 1 • Develop procedures, processes, and guidelines to ensure that the research community will communicate knowledge back to the public to improve personal health decisions. • AHRQ, CDC, NIH

  10. Research & Population Health Medium Term Recommendation 2 • Funding and leadership for research and population health in NHII should come from state and local governments and private sector, as well as federal agencies.

  11. Research & Population Health Future Status • Increase data exchange and interoperability. • Shorten research cycle. • Allow focus to shift away from data collection and onto data analysis. • Return population based insights to consumers in a rapid and efficient manner.

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