Project status
PatientStories.ai is independent, exploratory product and program-design work begun after Kevin’s Ultragenyx role. The project explores patient narrative, longitudinal context, and AI-assisted information products. Development was deprioritized in September 2026 while Kevin focused on employment opportunities and publishing work.
The archive presents the project as design evidence. It does not represent an active scaled patient network, a validated clinical system, or a commercial research service with established outcomes.
The problem being explored
A glucose trace, survey answer, or clinical observation captures only part of a person’s experience. PatientStories asks how patient-authored narrative might preserve the context behind those signals: daily burden, access barriers, workarounds, support, goals, and changes over time.
The product thesis is to organize that information without stripping away the participant’s agency or making a derived summary appear to be a clinical fact. The design connects raw narrative, human review, structured categories, and a longitudinal view.
Participant-facing design
Concepts developed during the project include a health biography, reflection check-ins, a doctor-visit report, consent and participant identifiers, and personal/community views. The health biography provides a concrete participant benefit: an organized account that can support reflection and communication.
Kevin’s design work also considered how to keep the capture and review burden manageable. Adaptive prompts could request missing context, but the user would remain able to review, revise, or remove AI-derived material.
Information and governance model
The design considers the relationship between source narrative, derived signals, consent, and permitted use. Proposed categories include care friction, adherence barriers, emotional burden, workarounds, support systems, and tradeoffs. These categories are a design taxonomy rather than a validated clinical classification.
Potential research use would require separate governance and appropriate evaluation. Early feasibility plans are plans, not proof of completed enrollment or established regulatory compliance. Kevin’s clinical quality experience informs the design but does not automatically validate an independent prototype.
What Kevin contributed
His work includes product thesis, user journeys, data modeling, governance strategy, rapid prototyping, AI-assisted workflows, and practical value exchange. The project connects his earlier patient-data and engagement experience to emerging tools while remaining honest about its stage.
It provides a current example of product and systems thinking. The strongest evidence remains the design work itself and its relationship to the implemented clinical and remote-care programs documented elsewhere in the archive.
Sources and record basis
The project account is based on Kevin’s CV, approved career statements, and supporting project materials. Related public research and professional work are available in the source index.
PatientStories is exploratory design work. The archive does not establish production deployment, validated clinical outcomes, or an audit result for that project. The AI record supports exploration and prototyping. It does not establish a production clinical AI deployment or validated clinical outcomes.