Some HIEs Envision New Role in Patient Access to Data

Aug. 22, 2022
Speaking at Civitas Networks for Health annual meeting, HIE leaders describe plans to work with Invitae’s Cures Gateway to open access to patients, bolster equity efforts

Health information exchanges aggregate data on patients from across the community. Rather than going to multiple patient portals, patients wishing to share their health data could potentially get all that data about themselves from the HIE. In a panel discussion at the Civitas Networks for Health annual meeting, several HIE leaders discussed their nascent efforts to enable patient access to data, and how access to that data could help reduce disparities in care.

Devin McGraw, J.D., M.P.H., is the lead for data stewardship and data sharing at Invitae, which purchased a platform called Ciitizen that she helped to co-found to help patients get all their data in one place. She said initially Ciitizen worked with cancer patients, because their need for data was so immediate and the type of data that they needed was much deeper than what they might be able to get through a portal, and they might have three or four portals.

“We really saw a need to empower patients to get their data,” she said. They created an easy online platform for them to use to be able to collect their records and to identity-proof them. “Then we put the records in the patient's control so that they could decide when they wanted to share it,” McGraw said. “One of our earliest use cases involved working with a number of adult patient advocacy organizations in Black breast cancer, to try to address the very high rate of disparities in terms of Black breast cancer care,” she added. “We already had experience with gathering medical records, but it was taking us a long time. We were making requests to health information management departments and sometimes waiting up to 30 days to get these records. So we needed a much more efficient way to gather medical records.”

McGraw said the data infrastructure that the U.S.-based HIEs have built is fantastic, “but it's not accessible to patients. And it wasn't built in order to enable access to patients; it was built to enable physicians to access. How can we tap into that? How can we help HIEs serve the needs of patients in their community by empowering them with data? How can we help move the needle on racial and ethnic disparities by empowering people with data? We have created this gateway. We call it the Cures Gateway named after the 21st Century Cures Act, which first started to introduce the concept that health information exchanges have an expectation that they're going to be able to be available in terms of data sharing for more than just the treatment purpose for which they were built.”

Ciitizen describes its Cures Gateway as a new solution for HIEs that enables patients to obtain their medical records in a timely manner and useful format. It leverages existing data exchange models (IHE and FHIR) to deliver patients’ their medical records It provides identity-proofing of patients requesting their records. McGraw said that, so far, there is no cost to early adopter HIEs, and never to patients.

One HIE that is planning to use the Cures Gateway is the Rochester RHIO in upstate New York. “For many years, we've thought of system inefficiencies as reducing duplicate tests, making it so providers have the information that they need at the right time,” explained Sara Abrams, M.P.H., the organization’s vice president of data analytics and quality assurance. “But part of system inefficiency is that patient administrative burden, so in operationalizing the Cures Gateway, we aim to help reduce system inefficiencies for patients as well.”

Abrams said the Cures Gateway is part of Rochester RHIO’s broader strategy for health equity in their community. “Like in many communities, the pandemic really unsurfaced issues of structural racism and systemic inequities in in our community in a very real deep and challenging way,” Abrams said. “Our community came together, and the greater Rochester Black Agenda group developed a declaration that said that racism is a public health crisis. We were part of over 170 organizations, and thousands of individuals in our community that signed on to that declaration. In signing that, 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 improving diversity, equity and inclusion,” she added. “That includes our health data equity project that aims to improve the volume of race, ethnicity, and gender data in the health information exchange, improve the quality of it, improve the number of patients who have complete reported demographic information. We're focusing on building diversity in our governance structures, in what our committees look like, and what our workforce looks like. We are also focusing on opportunities that address systemic change and advocacy in our community.”

Abrams said Rochester RHIO had a long-standing relationship with Ciitizen and worked with them on a pilot for breast cancer patients. “When we were going through that pilot, we realized that there were lots of use cases where giving patients access to their data could be valuable to helping patients achieve better health,” she added. “Our commitment to health equity is really rooted in community collaboration, so we are working with a group of fellows in an executive healthcare program in our region. These fellows are leaders from all kinds of organizations — payers, healthcare systems, community-based organizations, Federally Qualified Health centers, behavioral health centers. We will be piloting our implementation of the Cures Gateway with all of those fellows.”

She said Rochester RHIO wants to work with its community members, to help them understand the workflow and to work directly with them to train their teams to walk through this process with their patients. “We're aware acutely that technology systems are really 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 who have a variety of health conditions,” Abrams said. “We have one FQHC that works with an urban African-American population, and that population doesn't use the patient portal much. They have low health literacy. They have a lot of social workers and community health workers in this Federally Qualified Health Center. We'll be working with their staff to help them understand how The Cures Gateway works. We're also going to be working with a rural FQHC that has a large migrant farm population. These are different populations that both have health inequities. Both have low health literacy for different reasons. Our role as a health information exchange is to empower our organizations and empower patients with their data, but also to help our partners who do the next step. The HIE shouldn't be between the relationship of a patient and a provider or their social worker or their caregiver. We want to make sure that we're helping to inform the process in a way that reduces patient administrative burden and helps improve health equity.”

Craig Behm is the executive director for CRISP, Maryland’s state-designated HIE, which is described as a health data utility.

A health data utility might work on a multitude of things, including privacy and security, basic connectivity, a certified Medicaid infrastructure, health equity and social determinants, he said. “Eventually, you're going to move beyond healthcare data to other really advanced use cases. I think patient access is kind of smack dab in the middle. And it's going to be great when we go live with the Gateway. We're really excited for this partnership. We're excited to see how patients respond to having data through an HIE instead of only having to go through 10 or 20 patient portals.”

Although he agrees patient access is a great use case, Behm said, he also very selfishly doesn’t think that's enough. “Maybe for a second, we can ignore the value to patients, because I think we all believe in it. Think about what's the value to the health data utility. Access to data is wonderful, but as we innovate a little bit, just imagine if I have a near match or old demographic data, and a patient's going to log into CRISP. Suddenly they can update the race/ethnicity, or they can correct a phone number, or they can unmerge records that seem out of place, or they can flag a mistake, and we can help direct them to the care team that might have input that mistake,” he said. “Or maybe if we're partnered with the WIC program in our area, we can have a one-stop shop and drive enrollment through a central corridor. We're really excited about thinking through access to data. But what do you do once you have patients interacting with the utility in these really meaningful ways? I encourage all of you to think through what are the use cases that go beyond the very basic checking the box?”

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