How HIEs Can Empower Patient Data Access, Boost Health Equity

Information blocking provisions of the 21st Cures Act require health information exchanges (HIEs) to support patient data access.

However, stakeholders did not build HIE infrastructure for this use case, according to Deven McGraw, MPH, JD, lead for data stewardship & data sharing at health IT vendor Invitae.

"It's not accessible to patients," McGraw said during a Civitas 2022 Annual Conference presentation. "It wasn't built in order to enable access to patients. It was built to enable physicians to access."

To help HIEs empower patients with data, Invitae created the Ciitizen Cures Gateway, a nationwide health information exchange designed to respond to patient-initiated requests for medical records from data providers.

The Cures Gateway evolved from Invitae's Ciitizen platform, an application that helps patients access health data. McGraw explained that the platform's first use case was cancer patients.

"We started with cancer patients because their need for data was so immediate," she said. "Cancer patients might have three or four portals given the number of doctors that patients with oncological conditions see, so we really saw a need to empower patients to get their data."

"We created an easy online platform for them to use to collect their records and identity proof them because we were not going through this traditional portal route," McGraw continued.

One of the platform's earliest projects involved working with patient advocacy organizations for Black breast cancer to try to address health disparities.

Between 2013 and 2017, the death rate from breast cancer was 40 percent higher in Black women than in White women. Further, only 40 percent of Black women with metastatic breast cancer report having been offered enrollment in a clinical trial. However, when surveyed, 80 percent say they are interested in clinical trials.

Patients that use the platform can download their data and share it with others. For instance, a cancer patient could send their data to a clinical trial specialist to see if they might be eligible.

However, McGraw explained that when the vendor would make requests to health information management departments for patient records, it would sometimes take 30 days to receive patient data.

"We needed a much more efficient way to gather medical records," she noted. "After working with a number of health information exchanges throughout my career, I knew that they had built an amazing infrastructure to transfer data, largely among physicians and other treating providers to treat patients."

To harness HIE infrastructure for patient data access, Invitae created the Ciitizen Cures Gateway.

If a patient requests their health information from an HIE, the organization can send the patient to the Cures Gateway. The platform then identity-proofs patients and gathers their records in the app of their choice.

"We pre-validate third-party PHRs and other apps that connect through the Cures Gateway on behalf of patients, ensuring they meet privacy and security standards permissible under information blocking rules," McGraw said. "We do the work of vetting these apps, and it's up to the HIEs connected to the gateway to decide if they are okay exchanging data with each app that we have approved."

Invitae has initially been offering the service at no cost to patients or early adopting HIEs.

Sara Abrams, MPH, vice president of data analytics and quality assurance for Rochester RHIO (Regional Health Information Organization), said that operationalizing the Cures Gateway is helping the HIE empower patients with data and address health disparities.

"The Cures Gateway is part of our broader strategy for health equity in our community," Abrams said during the presentation. "Like many communities, the pandemic unsurfaced issues of structural racism and systemic inequities in our community in a very real and challenging way."

"We thought about how we, as a health information exchange, could make an impact in the way that we work to connect our community and improve diversity, equity, and inclusion," she continued.

RHIO is collaborating with community members to pilot the Cures Gateway.

"We are working with a group of fellows in an executive healthcare program in our region," Abrams explained. "These are leaders from all kinds of organizations, so payers, healthcare systems, community-based organizations, federally qualified health centers, and behavioral health centers."

"We want to help community members understand the workflow and train their teams to walk through this process with their patients," Abrams added. "We're aware that technology systems are designed for default users, so in partnering with our community, we are hoping to learn how we can make the system work for all patients."

By empowering patients with their health data, RHIO hopes to move the needle on health equity efforts.

"In giving patients information, you can help move them toward knowledge around their health conditions, and they can gain an understanding about how to improve their health so that they can each live their best life," she emphasized.