Women’s Health and Implementing the 21st Century Cures Act

Lisa-Nicole Sarnowski | May 12, 2021

As we celebrate Women’s Health Week, we wanted to share some of the ways that ONC’s work directly impacts women of all ages, in every part of the country. ONC published a strategy in October 2020 that outlined federal health IT goals and objectives, with a focus on individuals’ access to their electronic health information. One step in achieving some of these goals is through the implementation of ONC’s Cures Act Final Rule, which advanced policies to improve the access, exchange, and use of electronic health information so it can be used where and when it is needed.

Many women play a key role in their families as healthcare decision-makers, and women who become mothers will make approximately 80 [PDF – 163] percent of healthcare decisions for their children. Women are also more likely to be caregivers, providing regular care to a family member or friend with a health problem or disability. As women age, more than half of them will have two or more chronic conditions and they’re at a higher risk of dementia than men. Arming women with necessary healthcare information during their various touchpoints with the healthcare system helps them – and their family members –  reach successful health outcomes throughout their lives.

But what specific considerations need to be considered? For starters, navigating the current healthcare system can be difficult, particularly for women of color. According to a 2019 National Healthcare Quality and Disparty report data, Black and multi-racial women were more likely to report that their health care providers sometimes or never showed respect for what they had to say. Patient concerns are important data points in prognosis and disease management, particularly in an environment where one-third of patients report gaps in information exchange. This puts many women at a disadvantage in a medical field that values the use of information and data to make healthcare decisions. Access to health records my help women overcome some of the barrriers they face as patients.

Moving the Needle

The 21st Century Cures Act laid out a vision for all patients to have access to their electronic health information. An important part of this vision is closing the health information gap as well as making sure that technical capabilities and tools reflect the diversity of the country so research findings can be applied across populations. ONC has participated in efforts with federal partners to better incorporate women’s health considerations into research, ultimately improving clinical practice and promoting safe, quality care. One such collaboration with the U.S. Food and Drug Administration and National Institutes of Health  resulted in the development of the Women’s Health Technologies Coordinated Registry Network FHIR® Implementation Guide. This implementation guide provides technical specifications and considerations for implementing a strategically coordinated registry network, which were then piloted by two women’s health registries. More information on the pilot projects, findings, and lessons learned can be found in the final report.

ONC’s Cures Act Final Rule continues to light the path towards greater health information exchange. Healthcare providers, health IT developers, and health information networks/health information exchanges are now subject to the information blocking provision in the Cures Act and its implementing regulations. These provisions will help to eliminate practices that are likely to interfere with the access, exchange, or use of electronic health information. Information sharing is now an established expectation. Having the right information when and where it is needed is vital for people to make care decisions for themselves and for those they care. The information blocking regulations provide an important tool to ensure women have the electronic health information they need to make informed care decisions for themselves and their families.

Standing Together

We encourage you to take a look at federal resources designed to help patients and caregivers understand their rights under the Health Insurance Portability and Accountability Act (HIPAA). Also, ONC has released a user-friendly resource that provides specific tips for individuals on how to get, check, and use their health information.

ONC has released a user-friendly resource that provides specific tips for individuals on how to get, check, and use their health information.

As the 2020-2025 Federal Health IT Strategic Plan lays out, individuals must be empowered with tools to use their electronic health information effectively, and we hope these resources help women do just that. Further, if you think you may be experiencing information blocking of your health data, we encourage you to visit our Health IT Feedback Portal, click on “Report Information Blocking,” and report your experiences.

Women deserve more power in their healthcare. Access to information is key to making that happen. This information is a powerful tool in making care decisions for oneself and others and reducing inequities. ONC remains committed to ensuring health IT-related initiatives will help move us all towards better and more timely information that will advance more equitable treatment of women in healthcare. And in so doing, the entire healthcare system benefits.