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Winner of Amgen Patients | Choices | Empowerment Competition Emerging Star of HealthCare Engagement Award
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The Health Care Blog

February 23, 2009

Open Source Health Research

By MATTHEW HOLT

CureTogetherI’m doing a first for THCB which is a IM chat interview. On the other side of the keyboard (so to speak) is Alexandra Carmichael who is the CEO of CureTogether.com. Hi Alex!

Alexandra: Hi Matthew, nice to IM with you!

Me: So we’re trying this out and we’ll talk about Repetitive Stress Injuries later!!

Now CureTogether was a late add to a panel at Health 2.0 last October, but to be fair you are very early in the process of what you’re calling Open Source Health Research. Before you tell us what that is, can you tell me a bit about your background.

Alexandra: Sure, you can add Repetitive Strain as a condition on CureTogether.

I started out in molecular genetics, actually, at the University of Toronto, Canada. I left grad school to co-found Redasoft, a molecular biology software company, with Daniel Reda. We grew the company over 10 years to having customers in 37 countries, then sold the technology we developed to Hitachi Software in 2005. We moved to California, consulted with Hitachi for a couple of years, and then were ready to dive into a new project.

Me: So if you Google the Alexandra tea-leaves, doesn’t it show you starting a genomics venture?

Alexandra: Right! We started out with the idea of doing a genomics startup (GeneTwist), where people could come together and share data to do genetic research on various health conditions. After much discussion with some of the top geneticists in the country, we decided it was too early for the genetic piece. But we realized there was still a lot of value we could add on the phenotypic side, gathering health data to add to a large, collaborative research effort.

Me: Which brings us to CureTogether. There are already LOTS of websites and patient communities that are centered around conditions and patient experiences. What’s different about yours and why do we need another one?

Alexandra: Great question, thanks for asking! There are definitely a lot of patient communities based on stories and support. But there are very few patient websites based on data. CureTogether is a data-driven site, bringing people with different conditions together to compare symptoms and treatments in a quantitative way.

Me: What does that mean compared to say Daily Strength, PatientsLikeMe or Trusera

Alexandra: I guess that should be “multiple conditions” instead of “different conditions” :)
We are more similar to PatientsLikeMe than to Daily Strength and Trusera, which focus more on stories and emotional support (also very important!)

Me: But you’re also different in that you’re trying to look at cross-condition links, right?

Alexandra: Yes, absolutely. That has been one of the most surprising things we’ve discovered. By being open to patients sharing data about multiple conditions (33% of our members have more than one condition), we are making some very interesting connections. For example, here’s a graph showing the various conditions that have been calculated to be co-morbid with our most active condition, vulvodynia, which opens up new research questions – http://curetogether.com/blog/2009/02/11/vulvodynia-survey-shows-high-comorbidity-rates/

Me: So what is the experience like for someone using the site? What kind of information are they recording and what are they getting back?

Alexandra: When you come to CureTogether, you can search for a condition, or you can sign up and start tracking your health (sleep, weight, calories, and exercise – more measures coming soon). If you choose a condition, you can see symptoms and treatments that other members have entered, check off and rate if you’ve had them too, share your experience, and see statistics to give you a sense of where you fit in the condition space. Your data is completely private to you, only the aggregate data is made public. This privacy is especially important for the more sensitive conditions that we study, especially in women’s health.

Me: OK, let’s talk about women’s health, and more importantly the research you’re already generating. What’s the new book about?

Alexandra: We’re so excited to be releasing a book called “Vulvodynia Heroes: 190 Women Share Their Experiences and Treatments”. It’s the first crowdsourced women’s health condition book, about a painful chronic condition that affects 16% of women at some point in their lives. Through this book we hope to spread awareness, reach out to people in pain who may not have heard of vulvodynia, and increase interest and funding for future research. You can read more here – http://curetogether.com/VHeroes/

Me: So lots of questions. What type of information and data is in the book? Did these women know it was going to be published like this? What do you hope will be the result?

Alexandra: Great questions! The book shows only aggregate data that is available on the CureTogether website. Symptoms, Treatments, Causes, Co-morbid Conditions, and Resources are the major categories. We circled it to some of our members in advance, and the response was overwhelmingly positive, ranging from “thanks for doing this kind of research, it is very much needed” to “wow this is amazing. What a project and what an amazing job you’ve done!”

Me: So what type of help is the book and the online information giving these women?

Alexandra: Imagine you have an embarrassing condition and you don’t know anyone else who has it. Your doctor recommends a treatment, or you read about something online. Wouldn’t it be great if you could ask 200 other people with your condition if they tried that treatment and what their experience with it was? It wouldn’t be medical advice, but it would give you a better sense of what you might expect, and help you ask better questions. People also seem to be very interested in asking things like “How many people have incredible itching as a symptom?”, to get a sense of the range of possibilities for their condition and where they fit.

Me: So are you just recording information so far, or are you also giving these users a way to communicate and ask those questions?

Alexandra: We did an experiment where I sent out one question to a community on behalf of a member, and it seemed to work well for everyone. So we are working on a way for people to ask each other questions through the site.

Me: OK. It’s early days for CureTogether, and as you say you’re practicing Open Source Health Research. What level of usage/signups are you seeing so far, and what do you think the eventual results will look like when you’re a little further along?

Alexandra: Right now 10% of people who visit CureTogether sign up as members. We’re at about 2000 members today but so far we’ve been in “soft launch” mode, iterating the site with the dedicated members we have to make sure we have something of real value before getting out there in a big way. I think as we start finding out interesting things with all the data we’re gathering and publishing the results, the phenomenon of Open Source Health Research as a viable complement to traditional research will spread. Seehttp://curetogether.com/blog/open-source-health-research-plan/ for more discussion on this.

Me: Which kinds of takes us back to your prior life in genomics and ideas about GeneTwist. Care to speculate about the actual ways that CureTogether’s data and community will actually lead to cures, together?

Alexandra: Yes, the grander vision for down the road is to integrate all kinds of data – genome scans, biomarker tests, streaming data from wifi health tracking gadgets. Collaboration with the larger research community as well, integrating our data with traditional clinical trial data. We already have researchers knocking on our doors wanting to start analyzing the data.

Me: So now “all” you have to do is get more people and more data into the site. How are you going to do that?

Alexandra: That’s a good question! By talking to people like you, for a start. Health and condition-specific bloggers seem happy to help spread the word. Disease foundations have also approached us, eager to help out. And media have all been coming to us so far. I just started the process of seriously getting out there in the past couple of weeks – I’m even on Twitter @accarmichael. It’s still mostly a grass-roots effort though. If and when we get funding, that could change. But it’s very rewarding work. At the end of the day, I know I’ve spent my time helping people and working to make a difference.

Me: Which is indeed something that’s good to hear. I think you’re on the threshold of a very interesting phenomenon because the information you collect from a few thousand or tens of thousands could really change the way we provide care for millions.I’ve been IMing with Alexandra Carmichael from CureTogether who’s been telling us about the relatively new site, and the brand new book. Thanks Alex

Alexandra: Thank YOU, Matthew! Have a wonderful day. :)

Original article at http://www.thehealthcareblog.com/the_health_care_blog/2009/02/im-doing-a-first-for-thcb-which-is-a-im-chat-interview-on-the-other-side-of-the-keyboard-so-to-speak-is-alexandra-carmicha.html