From patients to partners: Evaluating a co-designed website for congenital hypogonadotropic hypogonadism
Partnering with patients to co-design the virtual patient empowerment toolkit produced an understandable, actionable website that was responsive to patient priorities. This work supports the utility of co-creation and co-design for empowering patients with CHH and may serve as a roadmap for other rare diseases.
Authors
- Isabella R. McDonald (ORCID: https://orcid.org/0000-0002-7392-5130)
- Jeanna Chi
- Rich Le
- A. A. Dwyer
- Neil Smith (ORCID: https://orcid.org/0000-0002-2598-9965)
- Jordan Keels (ORCID: https://orcid.org/0009-0008-4216-7585)
- Samantha Strasser
Institutions
- Boston College (US)
- Parks Canada (CA)
- Massachusetts General Hospital (US)
- Center for Systems Biology (US)
- National Patient Safety Foundation (US)
Publication Details
- Journal
- Endocrine Connections
- Published
- 2026-03-20
- DOI
- https://doi.org/10.1530/ec-26-0027
- Primary Topic
- Electronic Health Records Systems
- Type
- article
- Field-Weighted Citation Impact
- 0.00