Open Letter: CureTogether’s Philosophy

June 2nd, 2011 Alexandra Carmichael 

Dear everyone,

I’ve been wanting to write this post for a while. Partly to better explain who we are at CureTogether, and partly to advocate for a different way of running a startup.

I’m in a very open state after working with the amazing Gary Wolf to put on the firstQuantified Self conference, so now seems like a good time to define and clarify our philosophy – what CureTogether is and what it isn’t.

1. We’re not here to compete.

People tend to assume we’re competing with PatientsLikeMe, MedHelp, MediGuard, 23andWe, HealthTap, Genomera, Edison, Google Health, etc. We’re not. I’d like to hereby give them all a standing ovation for the awesome work they’re doing to help patients. Rather than any one of us “winning”, we need many, many more innovators working on health! Seriously, it’s a giant problem and we need as many brains as possible focusing on it.

2. We’re not in this for money.

As a two-person social business, we run very lean, and don’t have any need for extravagant lifestyles. We’re very happy working out of our one-bedroom apartment. We don’t want venture capital, we aren’t running a stressful race to get acquired and sell out – we just like to get up every day and help patients in a calm, positive way, changing lives and doing what we love to do.

3. We don’t sell your data.

This may be the most common misconception about CureTogether. Your data is your data, totally private for only you to see. Aggregate statistics are made available on our website – for free. Occasionally, we will work with reputable research organizations to get more brilliant minds working on improving everyone’s health, and they sometimes make donations to support our work. In these cases, we may share some of the data we gather, but always take numerous steps to protect our members – both technical (such as removing any potentially identifying data prior to sharing), and legal (requiring researchers to legally bind themselves to not even attempt to personally identify any of our members). Sometimes, we will do custom research studies for companies and get paid for it. In these cases, we never share raw data with them. We only generate reports based on abstracted findings, similar to what we publish openly on our website. We’re also getting funding from prizes and awards, which is a reflection that we’ve built something useful. We chose carefully to be a for-profit company because we can do much more good as a business than if we had to constantly ask for donations.

4. We do want to help.

I live with several chronic conditions, so I understand daily suffering. It’s mostly under control now for me, so I live by the motto that every day I’m not in pain is a day I can help others in pain. Our strength is in thoughtful, powerful analysis and solving very hard problems. So we may not have slick iPhone apps, or a buzzing Twitter account. But we do commit to openly releasing the discoveries that we’re putting our full brainpower on, and we believe we will make some major discoveries to help millions of people suffering – they’re waiting for us, and we feel it every day.

5. We need your help, too.

We’re not into advertising, tricking people into signing up (like one VC tried to get us to do), or social media gimmicks. Daniel and I are also not super social people who go to all the conferences talking about what we do. We prefer to just sit down with our laptops and do the hard work. So if you have any way to help get the word out to more patients, and feel inspired to help, please feel free to go ahead, or let us know how we can empower you (like if you need slides for a talk, or quotes for an article, or whatever.)

OK, that’s all I wanted to say for now. Thanks for reading this, and please leave a comment below if you have a reaction you’d like to share.

Have a wonderful day, and take good care!
Alex :)

Alexandra Carmichael
Co-founder, CureTogether

Original article at http://curetogether.com/blog/2011/06/02/open-letter-curetogethers-philosophy/