Big news today in the health geek world: CureTogether has been acquired by 23andme.
For those just tuning in, CureTogether enables people to track and share their personal wellness experiments so that others can benefit from what they learn. 23andme enables anyone who can spit into a tube the ability to gain insights into their personal genome. Their partnership, to me, is another sign that the idea of grassroots contribution to health research is no longer “crazy” and getting closer to “obvious” every day.
More background on the two organizations:
Alexandra Carmichael and Daniel Reda founded CureTogether in 2008, “to help the people they knew and the millions they didn’t who live in daily chronic pain.” Thousands of people take CureTogether’s surveys and contribute their own experiences with over 500 conditions such as arthritis, migraine, and endometriosis. The most popular health topic on the site is depression, with over 6,500 members who have rated 105 treatments ranging from exercise to art therapy to drugs.
Anne Wojcicki and Linda Avey founded 23andme in 2006 and began offering personal genetic testing services in 2007 to empower people with knowledge of their own DNA. (Avey left the company in 2009.) One of the company’s core values is to encourage people to contribute to science: “So when you send in that DNA sample, you’re not only learning about yourself, you’re joining a community of motivated individuals who can collectively impact research and basic human understanding. In today’s connected information age, it’s no longer just about me. Instead, it’s about how we can change our understanding of ourselves by joining together.”
My personal favorite story about 23andme comes from David Hale: “Everything I n/ever wanted to know about myself I learned from my genome.” Enjoy:
As always, I’d be interested to hear more about what people think about this partnership. More specifically, since I’m working on the questions for Pew Internet’s next health survey: Is the time finally ripe for us to include questions about personal genomics? Or is it still too obscure for most people?
Thanks so much, Susannah!! It’s a super exciting for people-powered health research! :D
I think the acquisition of CureTogether makes a great deal of sense for 23andMe. 23 already has an active initiative to correlate genetic data to relatively harmless crowd-sourced observations such as bitter taste and sneezing. CureTogether tackles the harder problems of assessing the impact of both traditional and alternative treatments on people through a simple method of eliciting judgements of side effects and effectiveness. Moreover, they’ve been working together for awhile as it has been possible to download 23andMe data to CureTogether for over a year.
As for the Pew survey, I think it would be very interesting to know how many people are aware of personal genomics as well as how many are considering or have had their genome sampled or sequenced. Genetics is clearly an important component of the future landscape of healthcare, though we aren’t yet sure how that will evolve — consumer and e-patient action in this area may be a strong indicator of where we are on the adoption curve.
Here’s the question that the National Cancer Institute is fielding as part of their HINTS survey:
“Genetic tests that analyze your DNA, diet and lifestyle for potential health risks are currently being marketed by companies directly to consumers. Have you heard or read about these genetic tests? [yes/no]”
There are no follow-up questions.
Here’s my rewrite:
Genetic tests that analyze your DNA to trace your ancestry or personal health risks are available for consumers to take on their own. Have you heard or read about these genetic tests? [yes/no]
Have you yourself taken a personal genetic test?
Have you made any changes to the way you take care of yourself because of the results?
The problem with personal genomics is the less-than-above-the-board marketing. See, for example, what happened just a couple of years ago:
And as we reported back in 2010, there is very little genomic data for any mental disorder, such as bipolar disorder, that is relevant to an individual that a company like 23andme can share with you:
Research into the gene and gene mutations responsible for mental disorders is wide and inconclusive, demonstrating that it’s unlikely any single gene — or set of genes, or mutations, or whatever — are going to help explain any significant portion of mental illness.
While I love the data Cure Together publishes, you’ll see that every single treatment — except for alcohol (something I doubt few people would ever consider a ‘treatment’ for a mental disorder) is at least somewhat ‘effective.’ If you look at their live graph:
you’ll see the same thing — everything’s effective to some degree.
I guess it’s nice to know that basically doing anything will help your depression. But we already knew that and that gets to the heart of the problem with depression (and many mental disorders) — people with depression often don’t want to do anything.
The combination of these two communities? I wish them all the best, as there’s often synergies when you put two things together that just aren’t obvious at first glance.
I thought you might be interested in this recent article about our new venture —
“Cancer, Data and the Fallacy of the $1,000 Genome”
We believe that there are two, minimally overlapping types of clinical genomics, namely:
1. Presymptomatic genotyping for disease risk assessment
2. Post-diagnostic genotyping for precision diagnosis, targeted therapy and personalized medicine
Our company’s mission is to make the latter the new standard of care and we will be launching comparative effectiveness research studies, working with empowered patients who share our vision and would like to participate in redefining the research paradigm.
Certainly congratulations are in order for Alexandra. To have something become part of the health care infrastructure is an accomplishment.
So what does this mean? What’s next for users of Cure Together?
Interestingly, my wife just had a bout of pulmonary embolism. Now she has to figure how to self-inject a blood thinner for a week and then to live with coumadin. This morning she just said to me offhandedly, “Oh, a nurse said to me there’s a genetic test to see if I might have a family disposition to clots.” Got that news from…the nurse. Indeed, our experience is that nurses are more forthcoming about medical information than doctors. Now what do we do with that information? Hound her doctor for the test? Research it online?
The health “care” system is far more disseminated than we think. Because the vast obsession is with doctors, insurance companies, pharma, etc, etc, the extended network of health informers (or misinformers) is overlooked and neglected. (Our neighbors are already relating stories about themselves or friends.)It’s been there forever but resources to enable it to contribute better have not. And, as Susannah’s next post indicates, it’s going to get bigger and bigger. When is something rational and plan-full going to happen?