SpoolCast: Sharing Stories as Data: Building PatientsLikeMe’s Community – Q&A with Kate Brigham

Sean Carmichael

February 15th, 2011

Duration: 31m | 16 MB
Recorded: January, 2011
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Communities thrive when there is a common ground and a shared understanding. Connecting and feeling like you belong are essential parts of a community. PatientsLikeMe has created an online community for people struggling with life changing medical conditions. Here they can find support and share their experiences.

Kate Brigham is the Patient Experience Manager at PatientsLikeMe. Rather than focusing solely on forums and discussion, she has helped create an environment that encourages sharing amongst the patients. Through their similar experiences and shared vocabulary, patients create a support structure. In this podcast, Kate talks to Jared Spool about how PatientsLikeMe uses data visualizations to enhance the level of understanding within the community.

Here’s an excerpt from the podcast.

“…People don’t use their real name when they join the site. They have a user name. We allow people to post photographs on their profile, much like on Facebook or Twitter and some people choose to use photographs of themselves. Others choose animals or flowers or other things.

We try to get demographic information about people: are they male or female, how old are they, sort of where are they geographically but without having to identify themselves by name. Through the interface and kind of questions we ask, and through our messaging, you share as much as you are comfortable sharing.

People can also select different levels of privacy. One is where they basically only have their profile visible to people within the community. So there is a sense of a walled garden, and I think that is actually very important too. Many people feel more comfortable talking about this kind of information when they realize they are surrounded by others who are in the same situation.

They are talking to a room full of people who relate, who understand. Even the way that we identify people on their profiles, we very clearly show if someone’s a patient versus a caregiver versus a guest. If somebody is a guest, they are in fact actually required to share their real name.

[The different levels of identification] are ways that we can signal that you can come and share without fear of being publicly outed…”

Tune into the podcast to hear Kate address these additional points:

  • How do you approach this very personal information without turning off your user base?
  • How do you handle designing an interface that is not only usable but also emotionally supportive?
  • How are you using both structured data from surveys and unstructured data from forum discussions to create visualizations?
  • How have you converted people’s individual stories into data?

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