Rochester RHIO, one of the original organizations to implement what is now called the Invitae Ciitizen Cures Gateway, is providing a real-world example of how data sharing can improve patient care, reduce inefficiencies, and combat racial inequities in health care.
Launched by Ciitizen in 2021, the Cures Gateway is a platform designed for health information exchanges (HIEs) to comply with patient-initiated requests for medical records. Patients can use the platform to direct their records to a personal health app of their choice.
Sarah Abrams, vice president of data analytics and quality assurance for Rochester RHIO, and Deven McGraw, lead for data stewardship & data sharing at Invitae, spoke about the value of data sharing at a recent Connecting for Better Health meeting.
Rochester RHIO serves the Finger Lakes Region of New York state. The organization’s primary goal, Abrams said, is to reduce duplicative testing and help patients gather their medical records, which can be a tremendous burden, especially for people with complex chronic conditions and those trying to get qualified for clinical trials or seeking second opinions.
“We have an opportunity as an HIE to reduce inefficiencies for patients and make it easier to get their information in one place,” Abrams said.
In addition, Rochester RHIO is working with community groups to help improve diversity, inclusion, and equity in the region.
As highlighted during the pandemic, Rochester has experienced racial tension along with communities across the United States. This experience led to a “deep, painful” community conversation about racial inequality, Abrams said. As a result, the Greater Rochester Black Agenda Group declared racism a public health crisis and asked individuals and organizations to sign its May 2020 declaration. Rochester RHIO joined more than 170 organizations and more than 3,000 individuals in signing the declaration
“We thought about how we, as an HIE, can be impactful in improving health equity and reducing systemic racism in the spaces and places where we operate,” Abrams said.
In spring 2021, Rochester RHIO launched the Health Data Equity Project, which seeks to improve the quality and completeness of race, ethnicity, and gender data. Other efforts by Rochester RHIO include working to build diversity in its governance and workforce, providing additional training, and being intentional and considerate about the language and terminology that is used within the organization.
Abrams sees the Cures Gateway as an opportunity to work with organizations that are serving patients who are dealing with the impact of systemic racism and are at the receiving end of health inequity.
“Patients will have information that they need to empower themselves to receive better care,” she said. “With the Cures Gateway, our commitment to health equity is really rooted in collaboration.”