From patients to partners: evaluating a co-designed website for congenital hypogonadotropic hypogonadism

Patients with congenital hypogonadotropic hypogonadism (CHH) are geographically dispersed and have unmet health and informational needs. Patients often rely on the Internet to learn about CHH, find expert care, and connect with other patients.

We partnered with patients to co-design a website (virtual empowerment toolkit) and conducted an online evaluation of the website.

Healthcare providers, patients, and a design team engaged in an iterative 'design thinking' process (i.e., empathize, define, ideate, prototype, refine, and test) to co-design the website. Subsequently, patients with CHH were recruited and evaluated the site using the 'gold standard' Patient Education Materials Assessment Tool for Audiovisual Materials (PEMAT-A/V). Scores ≥80% on PEMAT-A/V domains are considered 'high quality'. Content analysis was used to group qualitative feedback into salient themes.

Patients were involved from the outset and in all stages of the design thinking process. Iterative patient focus groups and online surveys were used to prioritize content and refine prototypes. In total, 58 participants (48.5 ± 14.4 years) completed the online evaluation. All PEMAT-A/V domains scored >88% (i.e., 'high quality'). Participants (47/55, 86%) rated the site 'easy to navigate', and 52/55 (95%) would recommend it to another patient. Qualitative feedback was largely positive and expressed appreciation for the online resource.

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.