Career archivePatient journeys
Record 26Career record

Patient advocacy, co-design, and clinical collaboration

Brought patient and family experience into product requirements, clinical program design, education, and sustained engagement.

Period
Diabetes community and Ultragenyx portfolio
Kevin’s role
Program designer, collaborator, and patient-community partner
patient advocacyco-designpatient voicepatient experiencefamily systemsclinical collaborationXLH Networkhealth literacypatient community

Experience at several levels

Kevin’s work combines a personal origin in family diabetes care with professional experience building products, operating programs, conducting research, and collaborating with patient communities. The professional contribution is the translation of lived experience into requirements and operating decisions.

The record includes pediatric diabetes, adult chronic-care programs, family and social support, community-health engagement, and rare-disease research. Different groups required different engagement and collaboration models.

Family and social context

The Kaiser social-support study used supporters chosen by participants, while the South Texas work expanded the program frame from the child to parents, extended family, and community. These examples show that Kevin’s patient engagement work includes the people influencing daily behavior, not only the individual account holder.

Sugar Surfing and the associated community and workshop work added experience translating technical information into practical education for patients, families, and clinicians. Kevin partnered with qualified clinical experts in producing that education.

Value to product and program teams

Patient input becomes valuable when it changes a decision: the burden of a collection task, the clarity of a message, the timing of feedback, the availability of support, or the way a clinical workflow is presented. Kevin’s experience connects those decisions to teams capable of implementing and maintaining them.

The record documents repeated collaboration across the groups needed to make healthcare products and research usable.

Sources and record basis

  1. Conference abstractClinical Medicine & Research · 2010 journal issue and pilot abstract

    Contains the Diabetes Social Support Feasibility Pilot Study abstract, including Kevin McMahon in the author group. The link opens the journal issue.

  2. Published workSugar Surfing · Author and book resource

    The patient-education work co-authored by Stephen W. Ponder and Kevin L. McMahon and published by MediSelf Press.