Jared Spool: Welcome everyone to another episode of the SpoolCast. I have with me today Kate Brigham, who comes from a fabulous company called PatientsLikeMe, which you probably never heard of. But it is doing some amazing things in the field of how we think about, how we take care of ourselves and how we take care of people who are dealing with serious illnesses and medical conditions. They have built this web based application that is just really incredible.

Kate's going to be speaking at our upcoming Web App Masters tour, where we've got a whole bunch of folks coming to Philadelphia and Minneapolis and Seattle this Spring. I'm very happy to have a chance with talk to her today.

Kate, how are you doing?
Kate Brigham: I'm doing very well, thank you. It's great to be here.
Jared: Well it's fabulous to have you on this, what it turns out to be a snowy winter day here in New England. So PatientsLikeMe, I've probably been getting it wrong when I explain it to people. What would I say if I wanted to get it right?
Kate: Well we describe ourselves as having online communities for patients dealing with life changing conditions. So I think that's the initial premise of it. But it's very much 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, we actually enrich ours with having patients share data and really share their stories through a data visualization that puts into a visual, the experience that a patient is going through, the journey that this patient has been on.

They suddenly have shared vocabulary for meeting up with and talking with other patients. They can look at the journey that patient has been through. The experience they've had with their particular condition, and really understand where somebody is coming from. The different sorts of things that they've tried and experienced, and be able to relate to each other about very specific issues that they're sharing, treatments that they're trying and have a common ground and a way to relate to each other in the midst of a pretty challenging thing on a very nice footing.
Jared: Wow! That sounds really, really very cool. So what happens is is that someone who is dealing with a serious, like you said, life changing condition. Maybe they are having serious back pain or they've been diagnosed with something like multiple sclerosis or something.

They're dealing with lots of different stuff in their lives, right?
Kate: Absolutely. Health related issues. Social issues, as far as being out, potentially still trying to work, relate to friends and family members who presumably are not going through the same kind of health related issues that they're going through. Yeah, really 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: And so, they're coming to the website. This seems like a firehose of stuff to be dealing with that's flooding their life. How does patients like me begin to help them get that under control?
Kate: Sure. 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 experienced. 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. Maybe have the particular variant of MS that a patient might have.

They start to share data and then find people who are similar to them, who are like them. I think that's a big part of the process. Then 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 aggregations how they fit in and other people who fit in in similar ways.

They can also meet up with people in the forum and talk about similar issues that they're experiencing and going through. All with the ability to go back and then look at this profile and understand the person who's asking these questions in relation to their disease state and their disease context as well.
Jared: So, from their perspective, this feels like it could be a very difficult thing, right? In my life I've had some people who are dealing with things like multiple sclerosis. It's a hard disease to deal with on a day-to-day basis because some days you're fine and some days your body is just not cooperating, and you have no way of predicting this.

Someone who is going through that, the website, if I understand right, let's them connect up with other people who are going through the same thing. 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 of these people, 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. So it's really a first opportunity for them to find somebody else who is in a similar situation, who understands what they're going through, has been in their shoes and can relate to them in that way. So that's an incredible thing.

We also have some examples from our HIV community where people talked about our site being the first time and the first place they actually said they had HIV. And it was the first time they felt they had been put into a space where they can feel comfortable doing that and sharing that piece of information and starting to talk about that. And figure out how to incorporate that into their lives in a way that they've been really fearful about possibly or just not had any outlet for in the past.

That's really exciting too, I think. To give people a space and a forum to find others who really can relate. In our MS communities as well, we certainly heard people sharing anecdotes about what it's like and how they try to explain to other people what this condition entails and is like. I think one of the thing that's nice that we've also seen is for people who are trying to communicate with family members or caregivers, spouses et cetera. For them to be able to see the kind of information that somebody is sharing on PatientsLikeMe, understand the different symptoms that they're going through. See that everybody else is sharing those same kinds of symptoms, to understand the number of medications somebody is taking is actually pretty normal for someone in that condition.

I think it's also a great opportunity for 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 they're other people going through this as well. I think that's great.

It enables them to talk to their doctor in a way that they might not been able to before. Because they again, I think start to have more of a context and can start to advocate for themselves. Ask questions that they might not have had information about before. I think those are neat things.

Even by virtue of the surveys that we have people take, and a set of primary symptoms that we ask people about, you suddenly have the sense for, "Oh wow. I'm being asked about symptoms. I never thought about this. But yeah I might have a problem with X, Y or Z. Now that I'm being asked about it, in this pretty easy to fill out friendly survey, I can start to think about all of the different ways that this might impact my physical well being."

We also have just recently launched a quality of life survey that's an interesting way for patients to visualize and write down again through an easy set of questions, how they're doing physically. How they're doing socially. How they're doing as far as relating to people. So it's a nice way for people to start to, I think have something specific to look at as a framework for understanding all the myriad of many conflicting things that they're going through. Start to get a little bit of clarity of how different things are impacting them. What things are really problematic at various times and maybe less problematic at other times.

Because they can start to look at that over time and see some of those changes and be able to say, "Oh, well I'm trying something new. Is it making a difference? Has my stress level really gone up? Is that something that I can start to look at and see how that's having an impact."

I think for any of us, suddenly having a vocabulary to talk about some of these things in a context to put our experience in, is a great tool for all of us to be able to make sense of a pretty complicated situation of our lives.
Jared: This is really interesting to me because you're giving this really powerful experience. So from a UX perspective, as the person who's behind the design of the experience that's here, this is really... well in some ways it's treacherous territory. Because you're getting into really 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.

I mean one of the reasons people don't share things about their medical conditions is they're afraid that it's going to have effect on how people see them, 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 basically not just is usable by some metric of can people fill out a form properly, but is confidence giving and empowering and emotionally supportive.

Wow!
Kate: Well it's interesting. I think one of the very basic things that we do, and this creates interesting ripple effects too, is 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 chose to use photographs of themselves. Others choose animals or flowers or other things.

There's really a way for people to I think share this little personally identifying information about themselves as they feel comfortable with. So, we try to set them up very much and also message describe clearly that people can share as much as they are comfortable sharing. So, I think that is one thing try to do right off the bat.

We try to get demographic information about people that allows us to get a sense for, are they male or female, how old are they, sort of where are they geographically but without having to identify themselves by name, by some other things. So, and I think that's one way that we signal both through the interface and kind of questions we ask and through our messaging around that you shares as much as you are comfortable sharing.

We also have a couple of different levels of privacy that people can select from. 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 talk about the fact in the forums is one example and other places 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.

So, they are not talking in a giant room full of all sorts of people who don't have their condition. They are talking to a room full of people who relate, who understand and even the way that we identify people as far as on their profiles. We very clearly show in 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.

So, we have some different levels of identification. And I think those are a couple of ways that we can signal both that you can come and you can share without fear of being publicly outed. You can make some choices about how much you share and think about how comfortable you are with what you share. I also think one of the things that's really exciting to see and you certainly see this played out in forum discussions in one particular place.

But somebody will come and they'll ask a question about a particular treatment or about a symptom and other full respondents say, "hey, if you actually fill out some more information in your profile, we'll be able to answer your questions better because right now it is hard to get a sense for where you are coming from in your context. So, we can provide you better answers if you can share some of this information".

So, that I think is really nice because in addition to hopefully having an interface that clarifies and shares as much as you are comfortable with. You also have patients starting to really be able to identify and see a benefit for how sharing information gets them better answers, gets them better information. So, you start to be able to do a risk-reward calculation I think to some extent and realize, wow, what I can get out of this.

If I put a little bit of information into it as much richer if I don't. And that I think is a huge motivator. Really, I think we try to focus a lot on what the benefits are that you get out of sharing data, out of sharing information about yourselves because really, that's the point of all of this. As a patient, how can I improve my quality of life? How can I live better with my condition? What we really try to setup and what we try to support through the UI is make it very easy to share information but we try to make it very clear also what benefit you get out of sharing that information.

Being able to see yourself in context, understanding what other people are trying, with similar symptoms and similar levels of symptoms. Understanding the different treatments people are trying and how you fit in to that and I think some of those benefits focuses are really ways that we try to make it clear to people again.

That sharing information is a decision they make but hopefully it is a decision that you make because you decide you get better information on the far end than you have coming into it.
Jared: I'm intrigued by this idea of question completeness. I've been playing with Quora which if our listeners haven't played with it yet. It is this website where basically, people ask questions and people answer them. There have been a lot of those over the years but Quora has this interesting UI and people can vote up answers. It is interesting stuff. But the thing that interest me a lot about what you are saying that's related to my playing with Quora is one of the things I see is that people will put a question to a Quora.

It's like, "What do I need to do to make my programs have a better user experience?" And of course, the first thing that people say is well, it depends what you are trying to do. Can you give us a little info and there's no structure in the Quora system. There is a place where people can add details to their question but there's nothing that structures that.

What it sounds like you've done is you've actually built a structure for those types of elaborations that are around this specific domain of medicine. Is it just sort of medical issues in general, or, for instance, do certain types of issues have different questions than other types of issues?
Kate: We have a variety of different kind of surveys which are essentially a set of structured questions that people answer that populates their profiles. We have one set of questions that we ask people about symptoms. And symptoms are rated essentially on a scale of none, mild, moderate or severe.

So, you can ask, how bad is your stiffness and spasticity today? Are you experiencing none of it? Is it mild? Is it moderate or severe? So, that's one set of questions that we answer in some of our outcome surveys which are more focused on the particular condition that somebody has.

Actually our Parkinson's disease scale is a really interesting one. We enable people to tell us, basically, how well are you functioning. Are you able to do some of the normal activities of daily life? Can you get dressed? Can you do some...in the same way you ask me what I had for breakfast. Pretty easy question to answer. Can you walk up and down stairs? Are you able to do a lot of your daily tasks, and at what level are you able to do them? Slightly impaired?

Again, some of the gradations that people can think about, but in that particular survey patients can also decide to tell us about how they're doing on medication or off medication because Parkinson's medications are such that when you're on them, they immediately take effect. You start to feel better. You have a visible change in your symptomology, and then when they start to wear off, you start to have an increase in your symptoms.

So, it's interesting that patients can actually pick and say, "Well, when I'm on my medications, this is how I'm doing. When I'm off, this is how I'm doing" and be able to see that and understand that and actually share that with one another. And then, it sparks a great conversation about, oh, have you tried adding this other particular medication which sort of helps during the off periods.

It really enables people to, I think, have much richer conversations where they can relate their own experiences by looking at a profile that's somebody's created where they're sharing data about their experiences. Putting that into a way that's really easy for anybody else to understand because they've been there, too. They understand in that they're going through it as well. They've got a shared vocabulary and a shared set of experiences.

So, again, I think, with the Quora piece, it's just a way to get much more specific. But to ask pretty easy to answer questions, patient reported outcomes is something that is kind of a term that's often used in this sphere. A big part of patient reported outcomes is to create questions that patients can comfortably answer themselves, can self-report on.

And so, I think that's a big part of what we try to do is to create questionnaires for people to take surveys, for people to take that are very straightforward that they can relate to their everyday lives.
Jared: Now, you're using terms like patient reported outcomes. Is that an internal term, or is that a term that patients like me, the users and the community to see?
Kate: That's probably more of an industry term. Again, I think that we try not to use that sort of language often within the site. So, we talk about things like symptom surveys. We talk about treatment surveys. For different conditions we have measures which we call, things like quality of life. That's actually both an industry term and something that's patient based and patient friendly.

But we've just gone through an interesting process of looking at condition categories and thinking about meddra codes that we use to match things so we've got a really rich reference architecture behind it, but recognizing that the way a doctor or a coding system would actually talk about a particular symptom or condition is very different from how a patient would talk about it.

One of the things that we're also trying to do which is really exciting is to start to have patients be able to use their own terminology and really collect the sort of folksonomy that patients use when they describe their symptomology. And map that back to more clinical terms so we can help both patients and clinicians ultimately start to both identify the same sets of things using whatever language they're most comfortable with.

So, I think that's one thing that we do, and it's really interesting the kind of terms that patients will use for things like brain fog. It's one symptom that goes along with MS and some other conditions. Cog fog is something people call it, brain fuzziness and there are 20 or 30 different terms that patients have used for it.

And it's important for them to be able to talk about their experience in a way that really is how they think about it and just have that map back to the more clinical term that kind of matches up with that but enable them to use the language that is comfortable for them, is familiar for them. It's how they think about it.

And to maintain that richness. I think that's actually another piece that we're doing that's very exciting, is trying to get that patient real world experience, that patient language into the process. And really incorporate that as much as we can as opposed to trying to forcibly translate that into a more clinical term.
Jared: Yeah. So, talk about swelling in my limbs instead of edema and things like that. And so, that's interesting to me because had you been working in the medical field before you took this job?
Kate: No. I had a brief stint doing public health research when I first got out of college. I was interested in health economics and thought I'd end up going that way and ended up heading into design. So, it's been a domain area that I've learned about since I've been here. I think all of us have.

It's funny to me to hear myself talking about things like Parkinson's patients being on and off and medication effects because I certainly do not have a clinical background.

But again, I think a big part of what we can all bring to the table, even those of us without the medical experience, is to really try to listen to, hear from and understand what the patient experience is like, and be able to translate that into something that a regular person can look at and relate to and have match up with their experience.

And we certainly have a team of PhDs and all sorts of people with clinical backgrounds who vet that and who work with us on that. But we do, I think, really focus on trying to enable patients to talk in a way that's people-friendly as opposed to doctor-friendly.
Jared: So that to me feels like you're immersed in this world. And all of a sudden you've got this whole new language. And it's not just one language, right, because you're sort of this translation point between the swelling and the edemas of the world.

And trying to make sure that the site can deliver all the services it can from the medical side, but at the same time, that you are doing things like understanding when brain fog and cog fog are the same thing or possibly different things depending on what's going on. Right?
Kate: Yeah, and I think even in the various reports that we have, symptom reports, treatment reports, we try to link up all the different names and terms that are used for a particular treatment as one example. So there's a generic name for it, there are a lot of different brand names. But to be able to bring somebody to a page and say "All these things are really the same. There are some different terms that are used for it." This particular treatment is one example.

And moving towards doing more of that with symptoms, too. So if you're looking at swelling, for example. We can show you a report and people who have shared information about their swelling and treatments they're trying for swelling et cetera, but say these are also symptoms that are related to this and that are similar to it. And you can start to see those relationships and think "Oh yeah, maybe that's what I have."

Even as people type in symptoms to try to add a new symptom they're experiencing, be able to show them a list of similar kind of things. So they can look and see what other patients might have used or talked about to see if one of those matches up with how they think about it. So trying to create those mappings is certainly something that we are continuing to work on and actively working on to make that as seamless as possible for patients. So they don't have to think about it. It's our job to think about it.
Jared: Along those lines, you mentioned that you're really trying to bring this stuff out and I know that at the Web App Masters Tour one of the things you're going to talk about is how you've designed the many different types of visualizations that you've put in the site.

So you've got all this data. Some of it sounds really structured, because you've got these surveys. And some of it sounds unstructured, because you've got people talking. Talk about a little bit about the things you've been trying to do with visualizing this not just in words, but in graphical interactive settings.
Kate: So I think what's actually interesting is... I think we've done a god job of creating a structured data profile, which is really kind of an amazing data visualization of any particular patient's journey through their condition. So you can look and see how their overall health has been changing over time. You can see how their symptoms have been changing over time. You can see treatments as they've stopped and started them and changed dosages. And have essentially sort of a big time line view with all of these different components and understand how they relate to one another to some extent.

So we have those. And then we also have conversations taking place in places like the forum for example, which are very unstructured. And one of the things that we're looking to try to do now is to bring some of those together more. We've started to do that in a lot of ways. But we can do that a lot more and do that a lot better.

I think one way that we've started to bring together structured and unstructured conversations or, I think, text-based conversations and more structured data is through our treatment evaluations. So that's been an interesting place where people take a survey and they talk about explicitly how well did they think the treatment worked, and did they experience side effects on it, and what where the side effects, and how bad were they, and how much did it cost, how much of a burden was it to be on this treatment. So we can do some really nice structured reporting and sort of collective reporting about side effects.

But then we also enable people to talk about any advice or tips that they might want to share. And that's a nice way for people to annotate or amend the data that they're sharing with a little bit of a story behind it. So you can then put the data you're seeing in more contexts. You can not only see what they're taking, how long they've taken it and how they're rating its effectiveness against whatever particular reason they're taking it for.

But you can also see what they're having to say about it, which is great and I think adds a level of richness and dimension that's really nice. People talk about "You know, I try to take it right before bed, because I find if I do that, even though it makes me sleepy it's sort of fine because it helps me sleep." So you can start to see how the story can really enhance the data and how the data can enhance the story.

Actually, there's a patent that Jamie, one of our co-founders, got at some point a reference quite a while ago about adding data into forum conversations so again, trying to bring data together with the story piece. So you have both a very straight forward information that lets you understand explicitly what somebody has gone through, what they've tried, time frame, dosage, some of those really kind of specific pieces of information that are helpful to have.

But also to then be able to have somebody story around it so you can understand if you see somebody who's the pain levels suddenly shoot up and it is because they broke their leg which actually doesn't have anything to do with their condition but this other piece of information that happened that is an important part of their story. So, some of the things that we're working on and hopefully it will start to make it into the site for the people to see in the not so distant future, are ways to do that.

Again, one effort we've made towards that which is really a neat one is a tool we call instant me and it is a super easy question. It is just how you do it and there are five answers. I'm doing very good, good, neutral, bad, or very bad and then they can do a quick little status update, 140 character, Twitter-esque kind of status update to say here's why and here's what's going on.

And it is a great way to be able to look at somebody's profile and say, hey, it seems like this person is doing really well. Great, they got promotion at their job or something that's not necessarily health related but again helps you see the person in their entirety and their whole and if somebody is doing really badly. They're having a really hard time. They've had, a symptom really get a lot worse or they've had a lot of stress and that's impacting how they're feeling in general.

They haven't been sleeping well. So, you can start to see a little bit of the story combined with the data and provide a great, rich context for people to share their experiences in a way that is both very straightforward and uses a shared vocabulary that everybody is using. But also enables the personalization and the richness of each individual's story.
Jared: So, in your talk at the Seattle and Minneapolis Web App Masters Tour, the sites that you are going to be stopping with us on. I'm really hoping that you're going to have a chance to share how you've been adjusting to all of this new stuff that you have been learning and how that sort of reflects in the design. Can you talk a little bit about just what you are thinking about in terms of how you are going to help us see that you don't have to be this complete expert coming in that you can learn from your users, you can learn from the people you are working with and that actually can help you make a really awesome design?
Kate: I think there are a couple things. I think data visualization is hot. It is something everybody wants to be kind of doing. But I think, again, going back to some basic principles and thinking about... Nobody thinks in data. People think in stories so if you can think about ways to help people create data out of stories, do that in a way that feels pretty easy and seamless.

Again, we try to use pretty easy to answer sort of questions and that's a good starting point. So, I think again, make it easy to have data but then also, think about the kind of conversations that people want to be having which is hard to have now. And that data can help people to have so I think it is a big part of that. Sort of not using data visualization because it's prettier, because it's cool but because really what it does is it adds layer to the conversation and it enables people to start talking about, thinking about and asking questions of one another, sharing information with one another that they couldn't do easily beforehand.

So, I think that is a big part of the learning curve that I've been on is really trying to understand what are the conversations people care about. The way that we developed our treatment evaluations really evolved because we heard what people really care about is they want to know the side effects of being on a treatment and so, we change the way that we visualize side effects and we moved them around on treatment reports to try and highlight them.

And we started to think about whether we were asking the questions in the right way so that people could share that information with us and easily see it as somebody coming in who cares about that. So, I think a couple of those are some key things for me as again just make it easy to make visualizations and make it easy to have conversations that you couldn't have easily without it.
Jared: Well, this all sounds really interesting. I can't wait 'til your presentation. Minneapolis and Seattle stops are not going to come soon enough as far as I'm concerned.
Kate: Me too. It should be great.
Jared: But this is fabulous. Thank you very much for spending this time talking about this today.
Kate: Thank you, Jared. It's great to be here. I'm really looking forward to being part of the Web App Masters Tour. It's very exciting and I had a great time talking with you too.
Jared: Excellent. Once again, I want to thank all of you fabulous folks who are on the listening end of this podcast, for listening to us and sending in your great questions and thoughts. We love to hear from you. Please post on our blog at UIE.com. And of course, you'll want to see Kate and all the other great speakers we have as a Web App Masters Tour. She'll be in the Seattle and Minneapolis stops. We have other great folks who are going to be at the Philadelphia stop and there maybe another stop on the tour at some point. Keep your eyes peeled.

But it would be awesome to see you there. You can find out information about the UIE Web App Masters Tour at UIEtour.com. Thank you very much for encouraging our behavior and for spending this time with us today. We'll see you again. Take care.