Getting access to one’s own health records can be difficult – often your health record is fragmented, with different pieces of it held by different providers, and there is typically a lengthy “authorization to release” process that involves paper forms, multiple signatures, and fax machines. This old method of patients and providers requesting and granting access to health records manually is inefficient, incomplete, cumbersome, and can be dangerously slow.
The LEAP (Leading Edge Acceleration Project) research study has developed a data platform that empowers patients to obtain and grant access to their health data in real-time while ensuring privacy and security of personal information. The app uses FHIR standards (Fast Healthcare Interoperability Resources) in order to support interoperability and integration with an ecosystem of innovative mobile apps. Through our app platform, patients will be able to request and control access to their health records via their mobile phone or other devices. To ensure the final product is both useful and easy to use, the app has been developed using “human-centered design” principles, with significant input from the community members and providers who will be the final end users.
A secondary aim of the LEAP research program is to enhance and expand opportunities for underrepresented populations to participate in health care research. Health-related research studies have historically included a disproportionate number of participants who are young, white males – undergraduate college students and other groups who may be easy to access for researchers, but are not representative of the marginalized communities we want to help. Project LEAP hopes to bring greater health equity to health research by streamlining marginalized communities’ ability to learn about and be recruited for research studies.
This research is funded as a co-operative agreement with the Office of the National Coordinator for Health IT, US Department of Health and Human Services through its LEAP awards. Khurshid Labs has been awarded this award twice, in 2019 and 2021. Expansion of this work is also being supported by the St. David’s Foundation, Austin.