Being an Ally: Communication Design's Role in Improving the Health Information Seeking Experience in People with Polycystic Ovarian Syndrome
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Eighteen percent of reproductive-aged people assigned female at birth have PCOS (Polycystic Ovarian Syndrome). It is very likely that most people have or will have a relationship with someone that has PCOS. It is a complicated, difficult to treat, underfunded, chronic health condition. People with PCOS struggle to get diagnosed, have a good relationship with healthcare providers and find quality information. Helping people affected by PCOS access accurate information regarding their health can encourage hope and healing.
This research describes the creation of a prototype website aimed to improve the health information seeking experience of someone with PCOS. The prototype is an interactive digital tool and educational project named Allyist. Allyist’s features and format are informed by human-centered design methods. The primary goals of the website are to help people test suspicions of having PCOS, thoroughly explain PCOS while also giving more specific information, improve the search for PCOS specialists, and provide personalized information that encourages self-advocacy.
User-testing with a small sample of people affected by PCOS revealed that participants had a favorable experience using Allyist. Results also show that educational visual aids that are simple and interactive are valuable to participants over personalized features. This suggests that most people are looking for straightforward health information online. Allyist can serve as a model for similar websites focused on other chronic health conditions.