Building a Community through Stories and Data

This past winter, I recorded a podcast with Kate Brigham from PatientsLikeMe. The company is doing ground-breaking work in the area of online communities. Specifically, PatientsLikeMe provides a community for patients dealing with life changing conditions. It’s a way for patients to get online, connect with other people who are dealing with and going through the same kinds of things that they’re going through.

But unlike other online patient communities, which are very much focused on forums or discussions, PatientsLikeMe enriches the experience by allowing patients to share data and their stories through data visualization. It puts a visual on the experience that a patient is going through, the journey that this patient has been on.

Below is an excerpt of the podcast interview. You can listen to the entire interview online.

Jared Spool: PatientsLikeMe provides a place for patients to meet up and talk with on another. It’s a place to communicate with each other about very specific issues that they’re sharing, treatments that they’re trying and have a common ground and way to relate with one another in the midst of a pretty challenging thing on a very nice footing.

They’re dealing with lots of different stuff in their lives, right?

Kate Brigham: Absolutely. Health-related issues. Social issues, work-related issues, and relating to friends and family members who presumably are not going through the same kind of experience. They’re trying to figure out how to function and how to continue to have a good quality of life and maximize their quality of life in the midst of what can be a pretty challenging set of health related issues to contend with.

Jared: This seems like a fire hose of stuff to be dealing with that’s flooding their life. How does PatientsLikeMe begin to help them get that under control?

Kate: I think part of the process is very much coming in, signing up. We have a start up process which encourages people to start to share a little bit about their health condition; when they were diagnosed a little bit of background information about their particular situation. Maybe their first symptom that they experience. But a little bit of that, with the idea that as they share a little bit of information about themselves and about their situation, they can start to find other patients who are in a similar space, who have possibly been diagnosed for about the same amount of time.

They start to share data and then find people who are similar to them. I think that’s a big part of the process. We also encourage patients to do things like share treatments that they trying and see how they relate to others in the community who are also taking those same treatments.

They begin to see a picture of themselves in a larger context. Which is very important. That they’ll be able to find those other people who they want to relate to and who are going through similar issues to connect with. They can do that through private messages. They can see in larger data aggregation how they fit in and other people who fit in similar ways.

Jared: This may be in some cases, the first people they’ve had contact with who have any sense of what they’re going through. Because everybody else in their life just can only deal with it on an intellectual level and can’t really understand the underlying emotion and stress that comes from this lack of predictability.

Kate: I think that’s very true. Actually, we have heard from some of our epilepsy patients, which is another community that we have, that for some, the people they’ve connected with online are in fact the first people they have ever come in contact with that really had an opportunity to speak with or email with, who actually have their disease as well.

I think it’s also a great opportunity for a patient to connect with others who are non patients, who are just part of their lives, and give them a sense for what this is. That their experience is normal and that there are other people going through this as well.

Jared: From a UX perspective, as the person who’s behind design of the experience that’s here, this could be treacherous territory. You’re getting into incredibly personal stuff that if you approach it the wrong way, not only might you just turn off your user base and make them go running for the hills, but there could be serious implications.

One of the reasons people don’t share things about their medical conditions is they’re afraid of the possible effects. How people see them or how their employer sees them. That their insurance might get cancelled. There’s all sorts of these downstream things that culturally makes people in this world close in. You have to design an interface that provides the data based on people filling in forms properly but all confidence giving, empowering, and emotionally supportive.

Kate: People only share as information about themselves as they feel comfortable with. We try to get demographic information about people that allows us to get a sense of their gender, how old they are, and where they are geographically, but without having to identify themselves by name or by some other things.

We also have a different levels of privacy that people can select from. They can share their profile to people within the community only. So, there is a sense of a wall-garden and I think that is actually very important to many people. The forums provide a place where they feel comfortable talking about this kind of information because they realized they are surrounded by others who are in the same situation that they are in.