What types of data do national academies think are needed to improve patient-centered outcome research (PCOR), especially with regard to differences in health status. Report this month (Basic moments) highlights some of the data capacity needs and also describes how the Office of the Assistant Secretary of State for Planning and Evaluation (ASPE) of the US Department of Health and Human Services (HHS) can help meet these data capacity needs.
Here are some of their key findings:
- Required data types. Information on mortality, health care costs, social determinants of health, disability status, and characteristics associated with differences in health outcomes.
- Patient-focused disease registries. The report notes that “disease registries can be a source of detailed, longitudinal, prospective clinical and patient-reported data that are not available from other data sources.” However, the collection of disease registries is often costly.
- Additional related data. Collaboration between federal agencies and between federal agencies and public and private partners is needed to remove barriers to data transmission, including the lack of unique patient identifiers and consistent coding systems.
- Integration of results reported by patients. The National Academies recommend “routine integration” of patient-reported data into various platforms. This process can be accelerated by collecting digital data.
- Standardize data collection. The report wisely points out that while standards are useful, their usefulness is most evident when it is “determined by their potential use and a clear sense of the value they can add.” Data standardization to facilitate international comparisons can also be helpful.
- Updating data access laws is key. The National Academy report notes 4 major laws governing data privacy and access, including: (i) the Health Insurance Portability and Accountability Act of 1996 (HIPAA); ii) “Part 2”, which deals with confidentiality provisions for substance abuse data; (iii) the Family Educational Rights and Privacy Act (FERPA), which covers educational institutions; and (iv) the Privacy Act, which applies to federal government data resources. Of these, HIPAA has the largest impact on data access, and NAS claims that its approach to data disclosure makes it “obsolete” and interpretations of how HIPA is applied are often “inconsistent”. NAS calls for a critical review of privacy law in the new world of the Internet.
- Build trust between people whose data is used. The National Academies wisely state, “Building and maintaining trust between individuals and communities whose data are requested for research is essential to producing high quality data, and patient groups can be useful partners in this effort.” The more sensitive the information, the more important the trust of the people providing the data is.
- Consider additional partnerships for sharing data between government agencies and health systems.. While this raises privacy concerns, the ability to access health system data for research purposes will allow researchers to answer a broader set of research questions with greater confidence.
Some noted key issues standing in the way of customizing these data structures include:
- Data fragmentation. The data available for the PCOR study is fragmented across multiple databases.
- Accessible data that is often collected for payment and treatment purposes. However, EHR claims and data may miss important social determinants of health.
- Data Replication Crisis. The National Academies note that PCOR studies can only be fully replicated if the original data and source code are available to others. When the data is public it will certainly be the best practice as long as sensitive and private information is still protected.
What does ASPE offer to solve these problems. This mainly includes: (i) holding meetings with stakeholders, (ii) facilitating access to up-to-date information, (iii) leading efforts to set data standards, and (iv) increasing the harmonization of the use of standards for data interoperability, and (v) prioritizing funding projects that help standardize PCOR-related data collection. The structure proposed in the report for ASPE is presented below.