The National Academy of Sciences believes what types of data volumes are needed to improve patient-centered outcomes research (PCOR), especially with regard to health disparities. A report published this month (emphasize) highlights some data capacity needs and describes how the U.S. Department of Health and Human Services (HHS) Office of the Assistant Secretary for Planning and Evaluation (ASPE) can help address these data capacity needs.
Some of their main conclusions are:
- required data type. Information on mortality, cost of care, social determinants of health, disability status, and characteristics associated with disparities in health outcomes.
- Patient-Oriented Disease RegistryThe report states that “disease registries can be a source of in-depth, longitudinal, prospective clinical and patient-reported data that other data sources cannot.” However, collecting disease registries is often expensive.
- More linked data. Collaboration between federal agencies and between federal agencies and public and private partners is needed to address barriers to data linking, including the lack of unique patient identifiers and consistent coding systems.
- Integrate patient-reported results. The National Academy of Sciences recommends “routine integration” of patient-reported data into various platforms. This process can be accelerated through digital data collection.
- Standardized data collectionThe report wisely states that while standards are useful, their utility is most evident when it is “driven by a clear concept of their potential use and the value they can contribute.” It may also be useful to standardize data to facilitate international comparisons.
- Updating data access laws is key. The National Academy of Sciences report identified 4 key laws governing privacy and data access, including: (i) the Health Insurance Portability and Accountability Act of 1996 (HIPAA); Substance Abuse Data Confidentiality Provisions; (iii) the Family Educational Rights and Privacy Act (FERPA) covering educational institutions; (iv) the Privacy Act covering federal government data resources. Of these, HIPAA has had the greatest impact on data access, with NAS claiming its approach to data disclosure makes it “obsolete” and explanations of how HIPA is applied are often “inconsistent.” NAS calls for serious scrutiny of privacy legislation in the new internet world.
- Build trust between those who use data. The National Academy of Sciences wisely states: “Building and maintaining trust among those who are seeking research data and the community is critical to producing high-quality data, and patient groups can be useful partners in these efforts.” The more sensitive the information, the better the data. The more important it is for people to build trust.
- Consider more data-sharing partnerships between government agencies and health systemsWhile this raises privacy concerns, the potential for access to health system data for research purposes will allow researchers to answer broader research questions with greater certainty.
Some of the key challenges that stand in the way of setting up these data structures include:
- data fragmentation. The data available for PCOR research are scattered in various databases.
- Available data often collected for payment and treatment purposes. However, claims and EHR data may miss important social determinants of health.
- Data Replication CrisisThe National Academies notes that PCOR research can only be fully replicated if the underlying data and source code are available to others. When data is publicly available, this is certainly best practice as long as confidential and proprietary information continues to be protected.
ASPE recommends how to address these challenges. Basically, this includes: (i) holding stakeholder meetings, (ii) facilitating access to the latest information, (iii) leading the development of data standards, and (iv) increasing consistency in the use of data interoperability standards, and (v) Prioritize funding for projects that help standardize PCOR-related data collection. The report’s proposed framework for ASPE is as follows.
