By Evagelia Tavoulareas, Media Mobilizer at Ashoka’s Changemakers
Since July 2008, CureTogether has been using the power of the internet (and crowdsourcing) to empower patients. And just how are they doing this?
Imagine a Wikipedia for health, but a Wikipedia based entirely on raw data, instead of text. While the internet has given us access to vast amounts of educational and anecdotal information about anything and everything relating to our health, what has been missing is structured, quantitative information related to treatment options.
Alexandra Carmichael and Daniel Reda have attempted to fill that gap by developing CureTogether – a website that aggregates patient-contributed data on over 550 medical conditions.
CureTogether quantifies the collective patient experience to provide a comparative effectiveness database for patients – online, and for free. Additionally, the infographics are the results of anonymized aggregate data (individual inputs are anonymous), making the platform especially appealing to those with “embarrassing” conditions.
At the moment, the site has over 12,000 members, with approximately 1 million data-points on 576 different health conditions – and is growing rapidly.
How did they get started?
Alexandra Carmichael, co-founder of CureTogether, suffered from chronic pain for about 10 years. After being told by numerous doctors that they could not find anything wrong, she dove into her own research and found her answer. Upon her discovery, she felt the need to share what she had learned with other women, yet she wanted the information shared to be quantitative. For example: How many people felt better on Treatment X as opposed toTreatment Y?
With her and her husbands’s backgrounds in business and science, they set up CureTogether as an experiment, starting with 3 conditions: vulvodynia, migranes, and endometriosis. Users of the site input their symptoms, treatments they have tried, and which treatments were most effective. Requests quickly flooded in suggesting the inclusion of other conditions, so they opened up the site and it started to grow rapidly. Today there are over 550 medical conditions represented on the site, the most popular of which are:
Chronic female pelvic pain
Concrete data is difficult to dispute, especially when it is coming from thousands of people around the world. Already, CureTogether’s patient-contributed data has replicated a dozen published disease correlations, showing that there is truth in numbers.
If our data corresponds to what is coming out in journals, couldn’t it mean that our data is just as accurate and representative as that collected via traditional methods?
Treatments range from conventional pharmaceuticals to lifestyle changes – but regardless which treatment shows the highest impact, it is difficult to refute a solution when thousands and thousands of people have benefited from it. At the very least, it creates a need for further study.
What we have on our side is the power of numbers… we do not claim to find medical cures, but we want to be a place for hypothesis-generation that would merit further research.
Scientists and medical professionals have embraced the potential of crowd-sourced data, and have used it as an example of the future of healthcare. Doctors enjoy seeing their patients taking a proactive role in their healthcare. And patients have access to aggregated data on hundreds of chronic conditions … for free.
Let us know what you think!
Original article at http://smblog.changemakers.com/meet-our-early-entry-winner-curetogether