PatientsLikeMe is is a startup that aggregates the experiences of patients to improve individual health outcomes and advance medical research. Users enter detailed information about their health day-to-day and share experiences on forums.

When I arrived, the company consisted of 6 people and served a community of ALS patients. There was no history of UX research or design. There were few metrics to evaluate the operation of the site. I was there to incorporate design thinking into product development and present the platform to researchers and designers. Ten years after launch, PatientsLikeMe has over 400,000 members and serves people with more than 2,500 conditions.

UX Research: Interviews, Mockups and Participatory Design

In the early days of the platform, we grew through adding disease specific communities one at a time. I conducted the contextual interviews used to inform that design process. I worked with the graphic designer to generate site mockups (patient profiles, reports, visualizations) that described the concerns of the particular patient group.

Expanding and Improving the Site: Defining Functionality, User Testing

Based on findings from contextual interviews and participatory design sessions, I made recommendations for new functionality on the site (e.g. mood trackers, upgrades to treatment reports) that are now core elements of the platform. And, to ensure the usability of new elements of the site, I conducted user tests.

Representing the Platform

During my time at PatientsLikeMe, I published findings on our work and presented the platform widely to different audiences, both in medicine and design, including an Ars Electronica Award of Distinction in 2008 and the paper of the year at Medicine 2.0 in 2009. Here is one of my final presentations on PatientsLikeMe made in Amsterdam.

The interactive treatment report was one outcome of our studies.

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