Emerging digital technologies provide exciting opportunities for patient generated health data (PGHD), defined by the Office of the National Coordinator for Health Information Technology (ONC) as health-related data created, recorded, or gathered by or from patients (or family members or other caregivers) to help address a specific health concern. PGHD include but are not limited to: health and treatment history, biometric data, symptoms, and lifestyle choices. PGHD will considerably alter the way in which clinicians and researchers interact with patient data, close care gaps, and provide a holistic view of patient data. Given the trend toward patient-centered care and availability of data collection tools via consumer devices (e.g., smartphones, wearables), there are exciting opportunities to collect and leverage PGHD to optimize care outcomes but also emerging socio-technical challenges (e.g., EHR workflow integration) which may limit their use. Additionally, the digital divide has been identified as the newest social determinant of health, ultimately impacting patient wellness and health equity.
The project “Equity Engines: Leveraging Human-in-the-Loop Patient-Generated Health Data with Automation to Optimize Equity Enhanced Care” addresses the ONC LEAP Area of Interest 2: Demonstrate
the use of equity-enhancing patient-generated health data (PGHD) for clinical care and research. The purpose of our project is to develop the infrastructure and standards-based PGHD technologies needed to demonstrate the scalable use of equity enhancing PGHD for clinical care and research from the point of care to the researcher. Specifically, we will (1) perform an environmental scan to understand current standards and interoperability of PGDF related to our proposed PGHD technology solution; (2) develop the Equity Engine (PGHD technology solution) that collects and shares PGHD among patients, providers, and researchers around clinical care and research that require PGHD and incorporate the needs of underserved communities; (3) conduct two demonstration projects in at least two separate healthcare locations for at least two use cases using the same underlying technology solution to demonstrate scalability; (4) evaluate operational utility of the novel solution to report the potential impact, opportunities, and challenges.
Our Equity Engine solution will be co-designed with input from the ONC, a coalition of key stakeholders including patients, and standards development organizations. We will leverage the organizational capacity of MedStar Health and technical expertise in clinical informatics and technical integration through our partnership with Health Lab. Our multidisciplinary team is uniquely positioned to successfully execute this project given our expertise and experience in human factors, health equity, clinical informatics, patient-reported outcomes, and usability. The result of our two year project will be the delivery of an open-source solution to capture and integrate PGHD including patient reported outcomes and patient generated health metrics. Our final report will document lessons learned, challenges encountered, and recommendations for a blueprint that can be used by others to advance the use of PGHD for research and in clinical care.