AUSTIN, Texas — Researchers at Dell Medical School at The University of Texas at Austin are developing an innovative patient engagement platform to make personal health information easily accessible and portable for everyone, with a specific focus on populations often excluded during technology development or clinical research. The project is made possible by a two-year, $1 million award from the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology (ONC).
The platform uses the principles of human-centered design and community-based participatory research to address health disparities existing in today’s medical records management systems. It will provide greater control and decision-making capabilities for people regarding their health data, ease patient-clinician communication through the platform, enable secure information sharing with clinical and nonclinical third parties and reduce the number of logins needed to access numerous apps.
“In current systems, it’s not easy for people to access their own health information, much less share it with others,” said lead researcher Anjum Khurshid, M.D., Ph.D., director of data integration and assistant professor in Dell Med’s Department of Population Health. “We aim to create a standardized way for patients to use just one platform that allows them to retrieve and let third-parties view their health records securely and through privacy-ensuring technology, regardless of which portals their doctors might use,” Khurshid said.
Ease of Use, Accessibility Propels Design
The platform is being designed to improve the ease of communication between clinicians and patients using the digital interface. “This approach not only helps to improve the doctor-patient relationship, but it also has the potential to help clinical research studies become more inclusive,” Khurshid says.
It will also allow users to easily share their health information with both clinical and nonclinical entities. For example, a person could share their medical records and interact with mobile applications from their insurance company, hospital, pharmacy or other service providers in a secure and privacy-preserving manner, says Khurshid.
Another key feature of the platform is that it reduces the number of times a user has to log into individual patient portals used by various medical care providers, thus making access easier. Instead, users can use other health information portals and mobile applications simply by logging into the platform. Khurshid likens the tool to an iOS or Android platform, which allows mobile phone users to access third-party apps.
Community Engagement as a Vital Research Resource
Central to the creation of this platform is how it targets end users: historically underserved populations that are often excluded during technology development or clinical research.
“We are gathering input about the issues specific to the most vulnerable populations, such as those from various ethnic minorities within the community or people suffering from specific chronic medical conditions,” said Khurshid.
The community-member feedback enables the resulting user experience to account for varying degrees of health literacy and to be sensitive to cultural variation.
“Dell Med, part of UT Austin, was created to improve the health of all people living in Travis County and Central Texas,” said Stephen Strakowski, M.D., Dell Med’s acting senior associate dean of research and professor in the Department of Psychiatry and Behavioral Sciences. “Including underrepresented populations as we design this tool helps to ensure that the end product reflects the needs of those who might benefit the most,” he said.
Community feedback will be gathered through a community advisory board, community patient groups and the Dell Med Department of Population Health’s Community Strategy Team — a group of grassroots leaders, connectors and advocates that rethinks strategies for meeting health needs of underserved people and neighborhoods across Austin and Central Texas.
Experienced community-based participatory researcher Carmen Valdez, Ph.D., of Dell Med and UT Austin’s Steve Hicks School of Social Work is part of the community engagement team in the project. Applied psychologist Eric Nordquist, a clinical associate professor at UT Austin’s School of Information and expert in user experience and human-centered design, is also collaborating with Khurshid’s team on the platform development.
Developing a Scalable Model for All
The platform is being developed using Health Level 7 International (HL7®) Fast Healthcare Interoperability Resources (FHIR®), an open-sourced application programming interface. UT Austin is one of only two organizations selected by ONC to help advance the development and use of emerging technologies to address future challenges of interoperability. If successful in its initial iterations in the Austin area, the patient engagement platform could ultimately be adopted across the country to improve medical record accessibility and portability for all Americans.
The two-year, $1 million grant is part of ONC’s Leading Edge Acceleration Projects (LEAP) in Health IT funding opportunity, which aims to further a new generation of health IT development and inform the innovative implementation and refinement of standards, methods, and techniques for overcoming major barriers and challenges as they are identified.
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