James Cummings Email and Phone Number

James’ career background is in UX and digital applications. After his son 5 year old son was born with Diamond Blackfan Anemia (5-7 cases per million live births); treatments include steroids, blood transfusions and bone marrow transplant (he also has autism.), James refocused his energy to healthcare modernization. His 3 year old son was born with VACTRL association (1 in 10,000 to 40,000 live births). Willam also has unassociated neurological tumors.As a result of both sons separate serious/ongoing rare conditions, James has spent years inside hospitals and witnessed their catastrophic problem of lack of longitudinal data access, standardized aggregation and the incapability to leverage deep machine learning models. Since 2021, James has emerged himself into the healthcare ecosystem and has quickly become a subject matter expert of data interoperability, policy, and health IT for public and private sectors. He is the 2024 recipient of the HL7® FHIR® Woody Beeler scholarship and a member of the Patient Empowerment working group, along with affiliations with the ONC, FDA and CARIN Alliance. James recognizes the future of health data starts with the patient/caregiver. Despite lack of education or experience, consumers have abundant time and wholly-aligned intent for positive outcomes. We are heading toward a future where clinical data and electronic health records (in addition to the outpacing non-clinical data of genomic, contributed, wearable, tracking, monitoring and social information) will travel on the possession of consumers. In effort to help this trajectory and inevitable future happen sooner, James immediate mission is design a process for consumers to aggregate personal health records (PHR), resolve standardization inefficiencies and expose data-blocking actors. Subsequently, James will implement the duplicatable process into rare/undiagnosed registries to exponentially advance the disease understanding and treatment. These ommunities already far along the participatory and data aggregation curve, they will demonstrate the proof of future health care and research behavior.