Enhancing data infrastructure to improve women’s health outcomes
- Collection:
- Health Policy and Services Research
- Contributor(s):
- United States. Department of Health and Human Services. Office of the Assistant Secretary for Planning and Evaluation. Office of Health Policy, issuing body. Office of the Secretary Patient-Centered Outcomes Research Trust Fund, issuing body.
- Publication:
- Washington, D.C. : Department of Health and Human Services, Office of the Assistant Secretary for Planning and Evaluation, Office of Health Policy, October 2022
- Language(s):
- English
- Format:
- Text
- Subject(s):
- Data Collection Outcome Assessment, Health Care Registries Women's Health United States
- Genre(s):
- Technical Report
- Abstract:
- Improving maternal health before, during, and after pregnancy is among the nation’s most pressing public health priorities. Maternal health, mortality, and morbidity are strategic national research priorities across the Department of Health and Human Services (HHS) reflected in Healthy People 2030 and the 2019 Congressional reauthorization of the Office of the Secretary’s Patient Centered Outcomes Research Trust Fund (OS-PCORTF). Patient-centered outcomes research (PCOR) requires robust data to monitor, understand, and address health outcomes that are unique to women. However, researchers face many difficulties aggregating data on outcomes for women’s and maternal health to produce informative, actionable evidence on health care options. Such data are often captured across multiple, disparate platforms with unique data elements, which limits researchers’ ability to analyze these data in aggregate. Under the OS-PCORTF, the Assistant Secretary for Planning and Evaluation (ASPE) has funded multiple projects that are helping to address these challenges with better tools to collect, standardize, link, share, and analyze women’s health data. The 2020-2029 OS-PCORTF Strategic Plan charts a course for the future and includes a priority area under Goal 1 around maternal health. Recent technological advances in screening and testing to improve diagnostic accuracy as well as in treatment options for clinical conditions unique to women have spurred a growing demand for evidence on the performance of these interventions that better reflects women’s experiences and outcomes. Patient registries can help meet this need by including real-world data on patient care and specific device exposures. However, they can also require major investments to run efficiently. Both completed and ongoing projects have focused on forming collaborations across coordinated registry networks (CRNs)--in which multiple registries align their data capture and sharing--as a mechanism for increasing the data and analytic tools available for women’s health research.
- Copyright:
- The National Library of Medicine believes this item to be in the public domain. (More information)
- Extent:
- 1 online resource (1 PDF file (5 pages))
- Illustrations:
- Illustrations
- NLM Unique ID:
- 9918590085306676 (See catalog record)
- Permanent Link:
- http://resource.nlm.nih.gov/9918590085306676