How CureTogether enables patients to drive medical innovation
The 25,000 members of Health 2.0 company, CureTogether, have contributed nearly three million data points across 576 medical conditions. In the process, this community is not only helping itself via mutual support and information provision, it is also ushering in a new paradigm of patient empowerment and creating new models for clinical research. Co-founder Alexandra Carmichael explains the workings and impact of CureTogether.
Tell us a little about yourself?
Well on the professional front I have a degree in molecular genetics and molecular biology and I spent 7 years as co-founder of a life sciences software company (Redasoft). On the personal front I’ve lived in and around chronic pain my entire life, first being around my mom – a chronic migraine sufferer of 30 years – and then with my own challenges: I live with vulvodynia (chronic vulva pain), migraines, depression, and a chronic multiple tic disorder.
How did you come up with the idea for CureTogether?
My vulvodynia, which I finally solved 5 years ago, was an extremely embarrassing condition. I had no one to talk to or compare notes with about it, and doctor after doctor could find nothing wrong. Striking out against my fear and loneliness I dove into PubMed to try and solve the problem myself. When I finally did find the solution I wanted to share everything I’d learnt with other women going through the same thing. As a scientist, I found the disease forums good for general support, but I wanted quantitative evidence-based answers.
Based on this need we put up CureTogether as an experiment, looking at three conditions: vulvodynia, migraines and endometriosis (which a friend of mine had). I published my symptoms, treatments I’d tried, and what had worked best. Soon we had a deluge of requests from people wanting to add their own conditions to the site, so we opened it up and it grew from there.
What is the central idea behind CureTogether?
Firstly we aim to quantify the collective patient experience. While other patient support sites focus on information from experts, we focus on quantitative data from patient-contributed conditions. With the largest available online real-world comparative effectiveness database we want this deep knowledge from individual patient experiences shared such that patients’ global voices are elevated in a way they’ve never been before.
CureTogether is also about breaking the isolation – helping people connect with others that they share multiple conditions with – something incredibly difficult to do on most health sites that focus on single conditions.
A final central idea to the site is looking at the unique co-morbidity data it generates – something that’s breaking through the paucity of research into this area. The idea here is to enable patients to help each other, help research into their conditions and in this way help themselves.
What are some of the key achievements to date?
Firstly we’ve achieved significant global reach, with 25,000 members in 112 countries. These members have contributed almost three million data points across 576 conditions. However, the real impact of CureTogether can be seen in the individual patient stories – where lives have been changed.
Using the data shared by these people our research has been able to replicate a dozen published disease correlations. In addition to this, we’ve also released infographics for eight conditions – scatter-plots of treatment effectiveness vs. popularity of use. What we’ve discovered here is that the most popular treatments are not always the most effective.
Looking ahead, what are the key opportunities and challenges for CureTogether?
A future impact we hope to have is in empowered trials. We’ve already received recognition from the clinical trial community and we’re currently in discussions with a cross-disciplinary team looking at re-purposing existing drugs for new indications. Both pharmaceutical companies and research organizations want to recruit our members to do clinical trials differently. We’re talking about a brand new space here – leveraging online communities for new research paradigms.
What does patient empowerment mean to you?
It means patients being able to draw on multiple sources of information to make robust medical decisions; including fellow patients, doctors, and online sources.
How do you see this movement around patient empowerment evolve in the coming 3-5 years?
I see more patients coming together to drive medical innovation, and doctors acting as guides or partners to work with patients on their health journeys.
Do you see an opportunity to collaborate with hospitals and the formal health-care system? In what way?
Of course! Hospitals are still essential for things like surgeries and emergency services, and doctors can be very helpful and knowledgeable. But increasingly they will need to work with patients, and incorporate patient knowledge into their systems in order to survive.
What will be the impact on the health-care system? Will there be a fundamental change in the way we organize health? Should there be?
Yes, a fundamental change is on the way – it may be a kind of creative destruction, or it may be a smooth addition to the medical system. It will depend on how willing the existing system is to adapt to the new health economy.