My background is digital product UX, but after my second son was born with a different rare disease from his 5-year-old, I focused my energy on healthcare modernization. My 5-year-old 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. My 3-year-old was born with VACTRL association (1 in 10,000 to 40,000 live births). He has undiagnosed profound deafness and neurological tumors.
I have spent years inside hospitals and witnessed the repeated lack of longitudinal data (including access and standardized aggregation) and inability to leverage deep machine learning (ML) models. As a result, James has immersed himself in the healthcare ecosystem and has quickly become a subject matter expert in consumer behavior, data interoperability, policy, and health IT.
I recognize that the future of health data starts with patients/caregivers (consumers). Despite lack of education or experience, consumers have wholly-aligned Intentions and abundant Time to contribute to positive outcomes. Humanity is heading toward a future where clinical data and electronic health records (EHR) (in addition to the outpacing non-clinical data of genomic, contributed, wearable, tracking, monitoring and social behavior) travel in the custody of consumers.
In effort to help this behavior trajectory and inevitable future happen sooner, I made it my goal to design a process for consumers to aggregate their longitudinal health records (LHR), resolve standardization inefficiencies, and expose data-blocking actors to influence policy.
I hope to implement the replicable data commons process into the rare and undiagnosed communities to exponentially advance the disease understanding and treatment, showcasing the maximum opportunity for ML tools as a diagnostic, treatment and research companion. Rare/undiagnosed consumers are far along the participatory and data aggregation curve; they will demonstrate the proof of future care and research.