A very frustrating and often medically unrecognized result of living with chronic illness is the awful feeling that you’re alone in your struggle. Years of expensive yet unsuccessful treatment by physicians can make many patients lose hope. But for Alexandra Carmichael, out of such frustration was built a platform for people to share and track their health data, resulting in significant improvement in thousands of lives.
Alex was uniquely qualified to pull this off. She has a degree in molecular genetics and molecular biology, spent seven years as co-founder of life sciences software company Redasoft, and has lived with chronic pain for a decade. Her journey helped make it clear how essential good health is, and how elusive it can be for millions. When doctors cannot be of help, the only way to find a cure is… together.
Alex launched CureTogether almost three years ago. It now has more than 12,000 users in 112 countries. Alex also helps others share their findings in person, as a director of the wildly-popular Quantified Self movement. As a user of CureTogether, and an attendee of Quantified Self meetups long before I met Alex, it was a privilege to interview such a role model who’s making great strides in citizen science. Here is our conversation.
Eri Gentry: What was the impetus behind CureTogether?
Alexandra Carmichael: I’ve lived in and around chronic pain for my whole life. My mom has suffered with intense migraines for the past 30 years, so I grew up with her in bed for days at a time. I live with vulvodynia (chronic vulvar pain), migraine, depression, and a chronic multiple tic disorder. Five years ago I finally solved my vulvodynia, after a 10 year odyssey of pain where, on some days, I couldn’t even walk or sit.
It was an extremely embarrassing condition, and I didn’t know anyone who had it that I could talk to or compare notes with. Doctor after doctor told me they couldn’t find anything wrong. I felt very afraid and alone, and eventually dove into all the research papers available on PubMed to figure out what I might have and how I could ask a doctor to diagnose it and treat me. When I did find a solution, I wanted to share everything I’d learned with other women who were going through the same thing, since I learned that vulvodynia affects one in six women at some point in their life. Also, as a scientist, I wanted it to be quantitative — how many people felt better on this treatment vs. that one? The disease forums were good for general support, but I wanted evidence-based answers.
So we put up CureTogether as an experiment, with three conditions to explore —
vulvodynia, migraine, and endometriosis (which a friend of mine had). I added the symptoms I had, treatments I’d tried, and shared what worked best for me. Very quickly, we had requests flooding in for people to be able to add their conditions to the site, so we opened it up and it started to grow. I was surprised to learn that hundreds of medical conditions existed! Now I know 923 people with vulvodynia on CureTogether and what their collective experience with the condition is like. My mom has 1180 people with migraine to share ideas with, and has tried some new lifestyle changes based on things people suggested at CureTogether. We’re not alone anymore, and if enough of us come together, we can make some real inroads into the conditions we live with every day. For me, every day I’m not in pain is a day that I can help other people who are.
The problems we’re trying to solve at CureTogether are:
1. Under-funded Diseases. The most popular conditions at CureTogether are chronic diseases, mostly affecting women, that are poorly understood and inadequately funded by research granting agencies. Our top conditions include depression, migraine, vulvodynia, and chronic fatigue syndrome. CureTogether helps people share their experiences and eventually do their own research into these conditions, amplifying research efforts to find successful treatments.
2. Embarrassed Isolation. For acute, terminal conditions, patients are supported and more likely to be open about their conditions. For chronic, sensitive, and rare diseases, there is more of a stigma associated with them, so patients suffer in silence. CureTogether provides an anonymous place to connect, and we often hear “I thought I was the only one with these symptoms!”
3. Unverified Anecdotes. Patients often have to rely on low-quality information around them — on the web and in under-served medical communities. We hope to bring some rigor to anecdote.
What makes CureTogether unique:
1. Quantitative Crowdsourcing. CureTogether is about quantifying the collective patient experience. While other patient support sites have focused on stories or information from experts, we focus on quantitative data across 576 patient-contributed conditions. Individual data is kept private, but the anonymized aggregate data is shared openly to maximize discoveries that can be made.
2. Open Infographics. At almost one million data points, CureTogether has the largest available real-world comparative effectiveness database available to patients online. It’s deep knowledge shared from individual patient experiences, elevating global patient voices in a way that has never been done before. We help patients learn what treatments are available for their condition (based on what others are trying), and how popular and effective each treatment is reported to be. Patients can also track any measures of their health over time, recording weight, stress levels, pain, mood, and sharing this information with their doctors.
3. Breaking Isolation. CureTogether also helps people find and connect with others with whom they share multiple health conditions, which would otherwise be extremely difficult since most health sites are organized around individual conditions. Imagine finding someone who shares 7 conditions with you and being able to ask them private questions.
4. Novel Discoveries. Finally, we have unique data on co-morbidities. We were recently able to replicate an association between infertility and asthma (and other conditions) using only patient-contributed data. As more patients add their voices, we will be able to give more personalized information about what might work for whom. Patients are helping each other, helping research go forward into their conditions, and helping themselves.
EG: Have there been any findings on CureTogether that surprised you?
AC: So many things have surprised me about CureTogether. A few of them are:
1. Global Reach. CureTogether has 12,000 members in 112 countries, who have contributed almost 1,000,000 data points across 576 conditions.
2. Changed Lives. The real impact of CureTogether can be seen in individual patient stories. Ricky is bed-ridden 22 hours a day with Ehlers-Danlos Syndrome, a connective tissue disorder. She has a computer screen mounted over her bed and an assistive keyboard to help her function online. Being an active member and curator at CureTogether has given meaning to her days. Another example is Chris, who lives with Bipolar Disorder. He uses CureTogether to track his mood and other symptoms. He shares this information with his therapist regularly, and says, “CureTogether seriously changed my life.”
3. Shared Research. Using patient-contributed data, we have replicated a dozen published disease correlations. We have also released infographics for eight conditions – scatterplots of treatment effectiveness vs. popularity, which have revealed that the most popular treatments are not always the most effective.
4. Empowered Trials. This is a future impact we hope to have. CureTogether has already received recognition from the clinical trial community, both pharmaceutical companies and research organizations who want to both recruit patients and do clinical trials differently. It’s a brand new space – leveraging online communities for new research paradigms. We are currently in discussions with a cross-disciplinary team about an idea to conduct open clinical trials to repurpose existing drugs for new indications. We also plan to open up more self-experimentation features on CureTogether soon that are in development right now.
EG: Is this data that physicians can use? Have you noticed more doctors incorporating self-tracked data?
AC: The feedback we get from doctors is that they are happy to have their patients actively involved in tracking their health, but they don’t know what to do with the data, or don’t have time to look at it closely with the patient. This is part of the reason why I go to a naturopathic doctor who can take 90 minutes with me to collaboratively decide on my best course of action for whatever health issue I’m having. I think doctors will increasingly have to figure out how to work with patients who are engaged and knowledgeable about themselves, becoming more of a partner to patients, and having to justify their medical recommendations with hard data and published studies.
EG: What fuels your passion for self-tracking and Quantified Self?
AC: I’ve seen the power of self-tracking in my own life to reduce chronic pain and to help me feel like I can make a difference in my own health. I’m not helpless, and there are others like me out there – we can share data and figure this out together. At Quantified Self, I love hearing the stories of people who are learning new things about themselves and open to being surprised by their data. It’s also amazing to watch this movement spread around the world, with new tools emerging and new questions being asked every day. These are the pioneers, and I want to help their voices be heard.
EG: Have you changed your lifestyle based on findings from Quantified Self and CureTogether?
AC: Wow, definitely. I adjust my lifestyle constantly based on things I’m learning from both projects. My diet is now gluten-, dairy-, and caffeine-free, to try to deal with headaches. I walk and stand a lot every day to help my sleep. I even tried Seth Roberts’ butter experiment to see if it would improve my mood or cognitive function, but had to abandon the experiment after it triggered a migraine. I’ve also become much more sensitive to noise pollution around me, started a meditation practice, and discovered that I live with Tourette’s. So in addition to all the amazing people I’ve been lucky enough to meet through Quantified Self and CureTogether, I do find I live a much more self-aware life that accommodates my particular quirks.
EG: Have you noticed trends in what people are tracking/are interested in? What seems like the most exciting area of research now?
AC: The main overlapping circles of things people track are: fitness, health, sleep, mood, time/productivity, energy, location, lifestyle/family, money, social media patterns, learning/cognition, and general lifelogging. It’s really all exciting right now, because there are so many more questions than answers. We have all this data but aren’t always sure what to do with it yet.
Another layer that’s happening is the data aggregators, who are starting to pull in data from all these different sources and combine it into visualizations that help you have an overall picture of yourself. Farther out, the real benefits will come when it’s not just the Quantified Self, but many quantified selves sharing their data to compare, learn, and make aggregate discoveries. There are so many basic human processes, like sleep, that we actually know very little about, so as people start to track themselves and compare their data, we’ll be able to learn what influences sleep and how sleep influences our lives. That’s just one of hundreds of examples that we’ll start hearing about as more socially run experiments pop up.
EG: If you were going to start a new company based on self-tracking, what would that look like?
AC: There is so much opportunity in this space. If you know about hardware, build gadgets to easily collect data. If you know about software, build apps, algorithms, and aggregators to help people gather, visualize, share, and interpret data. If you’re a scientist, build a platform that helps people run their own experiments or communicate their results. If you have a problem in your life, create a solution to help solve it, and let us know about it!
EG: Any advice for entrepreneurs in this space?
AC: Yes! Here are the top tips I give other entrepreneurs:
- Start super simple
- Release something completely alpha that you’re embarrassed about, get feedback on it, and iterate
- When you hit on something that people like and use and keep coming back to, ramp it up. Until then, keep tweaking and adjusting
- Be patient and don’t get discouraged – it will take 10 years
- Don’t raise money, don’t hire anyone – stay small and survive
- Read about the Lean Startup and Four Steps to the Epiphany
EG: Anything that excites you that I didn’t ask?
AC: What excites me most is helping people — helping people feel better, learn about themselves, and live happier lives. What I’d like to see happen is an international “personal data challenge” movement. I’d also like to see citizen science taught in schools — my two daughters are unschooled, and self-experimentation is an integral part of their education. I’d like to see citizen scientists making discoveries that are as significant as what’s coming out of traditional research institutions, but at a fraction of the time and cost. Imagine if the cure for cancer came from DIY biologists. The future is super exciting.
EG: How can MAKE readers get in touch with you?
EG: Do you need any help/are you looking for collaborations?
AC: Sure! We’re always looking for people to either help start studies on particular conditions, help spread the word to condition communities, analyze data, or give talks about CureTogether. At Quantified Self, come out to a meetup, or start your own!
Bio: Eri Gentry is a biotech entrepreneur, citizen science community organizer, and the co-founder of BioCurious, the first hackerspace for biotech, in the San Francisco Bay Area.
Original article at http://blog.makezine.com/archive/2010/09/curetogether-crowdsourced-health.html