Two years ago, President Biden signed Executive Order 14058 of December 16, 2021, on Transforming Federal Customer Experience and Service Delivery to Rebuild Trust in Government. This executive order put delivering for the American people at the forefront of this administration. Since then, our Customer Experience (CX) teams have made significant strides putting CX in action, and, today, we are celebrating the two-year EO anniversary with additional updates on progress achieved.
For many mothers, giving birth is one of the most significant medical events of their lives. Yet too many mothers have a negative birth experience – or even a traumatic one – and enter the postpartum period confused about the details of their care and without fully understanding the decisions that were made during labor and delivery. Further, 20 percent of women surveyed reported experiences of mistreatment during pregnancy and delivery care.
How Access to Maternity Records Can Improve Patient Experience
In 2021, as part of the development of the Biden-Harris Administration’s Maternal Health Blueprint, a team from the U.S. Digital Service conducted interviews with mothers of color who had collectively experienced 21 pregnancies and had received health care services in 11 different States plus Washington, D.C.
In these interviews, women shared how impactful it was – or would have been – to get convenient, digital access to their health records.
- One mother shared that her lab results, delivered quickly into her patient portal, showed indications of HELLP (Hemolysis, Elevated Liver Enzymes and Low Platelets) Syndrome. Having the ability to receive her results electronically and follow up quickly, she was diagnosed and induced to deliver that same day – likely saving her life.
- Another mother who had survived a traumatic first birth was very concerned about delivering her second child. Having access to her first birth record with her new obstetrician would have helped her process the events of her first birth and address some of her stress through shared care planning for the second birth.
- Having health records in hand can also make it easier to switch maternity care providers if a woman feels that she is experiencing racism or bias in her care.
Many patients have long advocated for easier, faster, electronic access to their health records. The bipartisan 21st Century Cures Act, signed by President Obama in 2016, included provisions to accelerate the use of health information technology (IT) to enable patients to be more direct participants in their care, empower providers with the best available information and tools to improve their ability to deliver high-value care, and advance the ability of researchers and public health professionals to improve the overall health of the population. The Department of Health and Human Services (HHS) is committed to ensuring that this electronic health information can be available where and when it is needed by patients, their healthcare providers, payers, researchers, and public health officials.
Our Commitment to Delivering Data Access for Mothers
Accessing a comprehensive maternity record can be challenging, given that health IT systems may vary between prenatal care, labor and delivery, and postpartum care. To improve this experience for mothers, HHS’s Office of the National Coordinator for Health Information Technology (ONC) committed in the Executive Order to test methods to automate patient access to electronic prenatal, birth, and postpartum health records (including lab results, genetic tests, ultrasound images, and clinical notes) to improve patient experiences in maternity care, health outcomes, and equity.
In fulfilling this commitment, ONC worked with multiple private sector partners, including Datavant, Luminate Health, and PathGroup to launch two pilots:
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Luminate Health and PathGroup tested a laboratory test result education module that was linked to a customer portal. Approximately 125,000 of all PathGroup patients had pregnancy-related testing within the past year, and nearly 4,000 women actively engaged with this feature. Information about this functionality was also made available to all PathGroup patients with a portal account, or nearly 600,000 patients. The portal was built to ensure that: a) pregnant women knew how to access and understand their patient health information, and b) no critical tests or screenings were missed that would lead to adverse outcomes or fatalities.
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Datavant developed an electronic medical record request platform with user feedback gathered from maternal health patients. Today more than 250 health systems, practices, and clinics have made the platform available for patients or caregivers to request maternal health records. Datavant received over 3,000 requests and 95 percent positive feedback from users over the last year. Quantitatively, this response from users reflects the importance of timely access to this electronic information to this patient population. From the qualitative responses, patients commented in surveys and interviews on the criticality of access to this data for their own autonomy in their care plan; several patients in this pilot reported complications from a previous pregnancy that underpinned their desire to make sure their new providers had all their information in case anything was missed.
Overall, nearly 5,000 women have received access to critical maternal health information between 2022 and 2023 as the result of this commitment. One patient reported requesting her medical records after a cross-country move while pregnant. She was trying to establish a relationship with a new provider and assumed her previous provider’s office transferred her records – but they hadn’t. She eventually had to track down the records herself, during a time when she was expecting a child, had started a new job, and had just purchased a new house. “Everything was happening all at once, and trying to navigate the health care system is hard,” she said. “I wasn’t even thinking about scans and ultrasounds and how much they’re needed. I just wanted to think about being pregnant.”
The pilot experience has shown that mothers have various medical, emotional, and financial reasons for needing to access their medical histories. However, obtaining these records from health systems and hospitals can still be frustrating, inefficient, and incomplete. Following the results of these initial pilots, which were tied to the executive order commitment, enhancements were made available through a Patient Request tool to all Datavant customers nationwide, and Luminate Health and PathGroup have included the same workflow as a standard part of their companies’ patient experiences.
To continue expanding robust digital access to longitudinal maternal health records, ONC is establishing a baseline data list for information that should be electronically available to patients and their providers. The United States Core Data for Interoperability Plus (USCDI+) Maternal Health initiative is taking shape to reflect the data needs of mothers, caregivers, and providers such as physicians, midwives, and others who are part of the mother’s care team. The initial draft data set is available for review with a comment period that will open in 2024.
ONC is also working with the National Institutes of Health (NIH) on a technical implementation guide for Longitudinal Maternal and Child Health Information for Research, which defines a framework to enable maternal health researchers to aggregate, calculate, and analyze electronic clinical information of research populations to explore the root causes for maternal and child morbidity and mortality. Learn more and get involved here.
The ONC Annual Meeting will feature a session, Improving Patient Access to Health Information with Patients as Partners, where pilot results and additional information about how ONC supports patient access to digital health records will be shared. Register here. Organizations interested in joining this public-private collaborative, may contact ONC here.
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