HCB News: Recent news shows large health systems are focused on maternity records. What are the unique challenges there?
SW: Conversations around our country's terrible maternal mortality rates have motivated people to better understand what's happening during pregnancy, while giving birth, and the perinatal period immediately after. Ensuring patients and providers have access to maternal data will help providers understand what’s happening and where interventions can assist while allowing patients and mothers to take more control of their and their child's care.

Historically, we focused on generalized patient access to medical records, which has been incredibly important. But there is even more impact when we tackle the specific issues of access records around major medical events like childbirth. This challenge allows us to give more unique solutions to the problem of access.
For example, a mom who had a high-risk pregnancy and almost died in labor with her first child would want to have access to that information. If she she became pregnant with a second child, she would be able to provide her doctor with all the information they need to best prevent a similar situation from reoccurring.

Mothers need to be able to say, “I want to be in control of my own health care, and I want to make sure you're taking care of me in the way that I need you to.” The vulnerability of pregnancy and childbirth require our health system to ensure secure but readily available health information; better more timely data should result in better outcomes.

HCB News: Does this burden fall on providers to give patients access?
SW: Yes, the burden falls on providers as well as the developers of Certified Health Information Technology. Under the HIPAA Privacy Rule, and reaffirmed by the Cures Act, providers must give patients access to their medical records. There are limited exceptions, but they do exist. Electronic Medical Records companies are also required to support this both by providing access to a patient portal and Smart on FHIR APIs that allow patients to connect third party applications.

HCB News: What future regulations can help to give every patient more control over their data? What can providers do now to improve access for their patients?
SW: We have a ton of regulation around access to data and records for patients, but what we need now is enforcement. Separately, as a country, we're heading towards a reckoning around privacy. There is an increased focus on health data and electronically generated information to ensure that patients have control over their data and that their privacy is respected.

More Voices