Most Popular

    Sorry. No data so far.


Winner of Amgen Patients | Choices | Empowerment Competition Emerging Star of HealthCare Engagement Award
Mayo Clinic Award - LeftA winner of the Mayo Clinic iSpot Competition for Ideas that will Transform HealthcareMayo Clinic Award - R

Matthew Cornell

An interview with Alexandra Carmichael, co-founder of CureTogether and Director of The Quantified Self

Mon, 2010/08/02 – 11:19 — matt

Alexandra Carmichael photo

I am delighted to share an email interview withAlexandra Carmichael, a leader in the self-tracking data movement and the way health decisions are made using the power of the crowd. She is co-founder of the collaborative health research site CureTogether, director of The Quantified Self, and a Research Affiliate atInstitute for the Future.

I came at the questions from our Think, Try, Learn perspective, with the goal of tapping Alexandra’s extensive experience in helping people take control of their health. Her idea is that by tracking and comparing health data we can better understand our bodies and make more informed treatment decisions, with the additional benefit of contributing data to research [1]. This meshes nicely with our own ideas about how self-tracking fits into a scientifically-oriented life as experiment philosophy. (See my post The Experiment-Driven Life for more.)

Some additional links on Alexandra:

Thanks Alexandra. Enjoy!

Why should people experiment with their health?

I try not to tell people what they should and shouldn’t do, especially when it comes to health. But for me, doing careful self-tracking helped me solve a decade of chronic pain when doctors didn’t know how to help me. So self-experimentation does have tremendous power. [The Wired article The Decision Tree: How Smarter Choices Lead to Better Health has more on her struggle with chronic pain. -- matt]

What mistakes do people make when experimenting?

The biggest thing I notice is that many people are not aware of the various cognitive biases humans have that affect our decisions and interpretations of the world. I wrote a bit about this here - Are You Biased? How To Make The Right Decisions

They also tend to try to measure too many variables at once (more on that below). [I think teasing out testable hypotheses and controlling variables in personal experiments is a significant challenge to personal experimentation. -- matt]

What are some ways that people trying personal experiments can keep it light and enjoy the process, especially given the serious nature of some conditions?

The most important point to remember is to keep things super simple. Only try one thing at a time, and see what happens. And only do things where you understand all the risks. Seth Roberts gave a great talk on this at a Quantified Self meetup last year: Seth Roberts on experiment design.[More on Seth Roberts below [2]. — matt]

What are some techniques you’ve seen people use when they get data they don’t like? Is there a healthy way to get some detachment from it?

Usually when people get data they don’t like, it serves as a strong kick in the pants to change something in their lives. You can go about your life without thinking about your health very much, but when there’s a number staring you in the face, it’s hard to ignore. Sometimes this leads people to stop tracking because of the discomfort of the numbers. I’m not sure what a healthy attitude looks like yet, but I’d love to know. Great question!

What advice would you give to someone wanting to start trying things, but is afraid to experiment?

I’d encourage people to learn from others’ experiences – check out the videos of people who are doing this: The Quantified Self videos on Vimeo. We will also soon have a self-tracking guide for beginners, on the new Quantified Self Ning site, to be announced on the QS blog. Stay tuned!

In what ways is treating things experimentally important in your own work and life?

In my work, we split test [3] everything – testing website design 1 vs. design 2, blog post title 1 vs. title 2, revenue model 1 vs. model 2. It’s a very humbling experience as you realize that most of the things you try have very little or no effect. Personally, experimenting has eliminated my chronic pain as well as eased my neurological symptoms (What I Learned From Tourette’s), and it’s one of the key components we’re teaching our kids as part of their homeschooling journey. [I completely agree on split testing. I'm often surprised by what actually matters, which hurts if I'm personally attached to a different outcome. -- matt]

What experiments are you doing right now, professionally? What about personally?

At CureTogether, we’re doing an experiment in partnership with Emory University to see if recruiting patients for a survey online can beat in-clinic recruitment methods. Personally, right now I’m experimenting with eliminating all wheat and dairy from my diet, different dosages of Magnesium and Vitamin D supplements, methods and amount of meditation, ways to increase a feeling of connection to my life partner, and different thought patterns to improve my body image and ease my intensely negative self-talk. [I'm a big fan of vigorous well-being experiments like these, which we're finding are popular in our Edisonexperimenter's journal tool. -- matt]

As a co-founder of CureTogether and Redasoft, what is the role of experimentation when creating new companies, and how do you create a culture that supports it?

The work of Steve Blank and Eric Ries on customer development and Lean Startup has profoundly influenced our thinking in this space. Basically you learn as fast and cheaply as you can, which means getting something minimal out there, running lots of experiments and iterating quickly. Some great links for this are Steve’s book The Four Steps to the Epiphany and Eric’s recent conference Startup Lessons Learned[Fast and cheap are important principles in any experiment in its early stages. The article How Google Grows...and Grows...and Grows calls it "fail early, fail often." -- matt]

The role of the village “medicine person” has disappeared with the advent of medicine. Along with that is the trend to give up control of our health to people in authority. In what ways does CureTogether change that?

The top conditions at CureTogether are chronic ones – depression, migraine, insomnia, vulvodynia (female pain), where people have tried the traditional means of treating them and been disappointed. They are taking back control of their health because they have no other choice – we help them connect and share ideas with each other in a more structured way than was previously possible. We now have enough collective data to be able to release infographics showing the most effective patient-reported treatments for 7 different conditions[These are utterly fascinating, such as whether Marijuana is better than chiropractic for back pain and the 9 Most Effective Anxiety Treatments. -- matt]

There’s an assumption in the self-tracking movement of an “observation -> awareness -> change” cycle. What’s your experience with that, i.e., does the simple act of measuring lead to change?

Ah yes, the eternal behavior change question. I’d say it’s a matter of debate right now, with one side noticing that people have always had mirrors and scales and they’re still obese, and the other side pointing out that you can’t optimize something that you can’t measure. Stanford researcher BJ Fogg studies behavior change, and has built a model for triggering desired behaviors – see BJ Fogg’s Behavior Model and Fogg Behavior Grid. Among self-quantifiers, seeing the data and sharing the data (either publicly, like tweeting your weight via the Withings scale, or in person at a QS meetup) does seem to have an effect on changing people’s behavior.

References

Original article at http://matthewcornell.org/2010/08/an-interview-with-alexandra-carmichael-co-founder-curetogether-and-director-the-quantified-s