The Power
of Patients
Autonomous patient and/or caregiver behavior will deliver unparalleled medical advancement in healthcare!
Despite No Medical Education or Experience, consumers, have: Fully-aligned Intent and Ample Time to contribute towards accurate diagnoses, positive outcomes and understanding.
Consumer Responsibility
Fully-aligned Intentions
and Ample Time
Consumer Behavior
Their most basic responsibility for Consumers to enact their aligned-intentions and ample time for favorable outcomes is data aggregation.
Consumers are the only custodian of Longitudinal Health Records (LHR), including data collected by the provider and wearable, behavioral data from the patient.
Complete real-time LHRs provide the exhaustive data for more accurate diagnoses, effective treatment and improved disease understanding.
Moreover, consumers have (or bestow) the opportunity to feed complete real time LHRs into Large Language Models (LLM) for their benefit. LLM's have the power to analyze perviously incalculable data for the time-restricted-human bandwidth.
Intent
Time
Provider
— Overworked Patient-loads
— Personal Lives
— Fear of Malpractice
— Fiduciary Duty
Committed to provide the best possible care, providers have Restricted “Time” and “Intent”:
$4.7 Trillion Produces 60 Zettabytes of
Health Data; Less than 1% is Openly Accessible
Silos of Sources
Electronic medical records (EMR) is fragmented across various providers, EMR vendors. In addition far-outpacing Patient Contributed Data (PCD), like wearable, mobile and genomic data can only come from the consumer
Privacy Restrictions
Federal privacy policy, such as HIPAA, prevent health systems and EMR vendors from openly accessing and sharing any collected personal and clinical data without direct consent by the Consumer
Business Interests
Health systems and EMR vendors are not financially incentivized to promote data interoperability. Conflict of business interests and fear of malpractice from accepting outside data disincentives data sharing.
Incomplete Data
Even with policy from like 21st Century Cures Act, and interoperability standards of Fast Healthcare Interoperability Resource (FHIR®), errors, gaps, and moment-in-time data limitations make complete real-time longitudinal health records (LHR) impossible without the custodianship of the consumer
Paradigm Shift
Longitudinal Health Record (LHR) Data Sets are possible for the first time with the Participatory Role of Consumers, Access Mandates of the 21st Century Cures Act and Health Data Standards of HL7® FHIR®
21st
Century
Cures
Longitudinal Health Record
ABOUT
James Cummings
James Cummings’ background is digital product UX, but after his second son was born with a different rare disease from his 5 year old, James focused his energy to healthcare modernization. The 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 is also has autism. The 3 year old was born with VACTRL association (1 in 10,000 to 40,000 live births); He now has has undiagnosed profound deafness and neurological tumors.
James has spent years inside hospitals and witnessed the repeated lack of longitudinal data (including access and standardized aggregation) and incapability 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.
James recognizes the future of health data starts with patients/caregivers (consumers). Despite lack of education or experience, consumers have fully-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, James’ vocation is to design a process for consumers to aggregate their personal longitudinal health records (LHR), resolve standardization inefficiencies and expose data-blocking actors to influence policy.
Subsequently, James will 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.
