We are excited to welcome Ian Eslick of MIT Media Lab to our research partners! Ian is studying collective self-experimentation and treatment recommendations, and will access subsets of CureTogether’s data to assist with his research.

CureTogether actively partners with academic researchers who approach us about studying our data. We believe having more minds looking at the data will only accelerate discovery, as each researcher brings their own approach and interest to the data analysis.

Our current research partnerships include, in alphabetical order by institution:

Carnegie Mellon University
Kateryna Kuksenok and Jen Mankoff
Dynamic filtering visualization of CureTogether data (in progress)

Drexel University

Will Dampier
Building an adaptive recommendation system for treatments (in progress)

Emory University

Adam Sperduto and Suephy Chen
Feasibility and Reliability of Internet Crowdsourcing Data Collection with Dermatologic Quality of Life Assessment Tools

MIT Media Laboratory
Ian Eslick
Collective self-experimentation and recommendations (in progress)

Stanford University
Diana MacLean and Jeff Heer
Analysis and visualization of community dynamics and data over time (in progress)

Transparency Life Sciences
Tomasz Sablinski
Open Source Clinical Trial on Low-Dose Naltrexone

University of California Davis
April W. Armstrong, MD MPH
Personalized Therapeutics and Evaluation of Treatment Responses in Skin Diseases from Patient-Driven Data (in progress)

If you are a researcher interested in working with CureTogether’s data for your project, please let us know.

I read recently about the idea of a “data donor” – someone who decides to donate their data to disease research rather than the more customary financial contribution.

In the future, as people gather more and more information about themselves, and learn the value of this data, I think that data donorship will become widespread.

At CureTogether, we’ve just added the ability for our members to upload their 23andMe genetic data to add to the research we’re doing. People are already eagerly adding their genetic data, and once we have enough genomes, we can start making discoveries towards understanding how our genes influence what symptoms we have and what treatments work for us.

In the screenshot above, you can see the interface for uploading your 23andMe data. You may also notice some points and badges we’re testing out – but that’s a story for another post!

We want to deeply thank all of our data donors – your information does make a difference in helping people around the world feel better.

At long last, after many requests, we have made a mobile version of CureTogether. It works across all platforms, and you can access it by going to http://curetogether.com with your mobile device.

We’ve built two apps to get the ball rolling, and more will be released as we go. With Treatment Finder, you can quickly look up the top patient-reported treatments for any of our 500+ conditions. And with Symptom Checker, you can do the same thing for patient-reported symptoms.

Here’s what they look like for Anxiety, our most popular condition community (above). You can see that the most effective reported treatments are Exercise and Deep breathing, and the most severe reported symptoms are Heart palpitations and Nausea.

We hope this makes it easier to access CureTogether stats on the go, in case you, your friends, or your family have health questions that you need to find a quick answer for.

Please let us know what you think of the new mobile apps, and feel free to suggest other apps you’d like to see us build for you to make your life richer and reduce suffering.

New Feature at CureTogether: Scores for Your Conditions

Ever wonder how you compare to other people with your condition? Are your symptoms worse than the average, or better?

Well, now you can find out.

We’ve just released a major update to CureTogether that gives you a score for each condition you reported and compares you to all other members with those conditions at CureTogether.

In the screenshot above, you can see that for each condition, there are two blue gradients. The one on the left indicates your severity score (how mild or severe your condition is), and the one on the right shows your percentile (how your score compares to other CureTogether members).

So for Depression, if you have a score of 65, that indicates a moderate severity, which is more severe than 89% of people at CureTogether with depression.

How are these scores calculated?

We put a lot of careful thought into how to score conditions, and while we won’t give away the specific algorithm, we do want to highlight some general principles to show the number of things that are factored in.

1. Your condition severity score is based on which symptoms you have and don’t have, and how you rate the symptoms you do have. Higher scores mean your condition is more severe, so you want to try and reduce your score over time.

2. The more symptoms you report having, the higher your score.

3. The higher severity rating you give each symptom, the higher your score.

4. Some symptoms count more than others – those that a higher percentage of people with the condition report (and those with higher average severity ratings) get more weight. So, for example, if you have a symptom that few others have, it counts less toward your condition score than if you have one that most others report.

5. If your score is below 33, it means you are more likely to say No than Yes to having a typical symptom for that condition (so you may want to look into alternate diagnoses).

6. The lowest score you can get, if you say No to having every symptom, is 0. The highest score, if you say Yes to every symptom and give them all “extreme” severity ratings, is 100.

There are other things factored in for dealing with cases where not all the survey questions have been answered and other situations, but this gives an idea of how scores are calculated (because we know our savvy readers will ask for details!)

Next up our sleeve is added functionality for longitudinally monitoring your condition severity and helping reduce your scores, which should be ready soon, so stay tuned.

Please login to CureTogether and let us know how you like the scoring system. We hope it helps you develop a better understanding of your health!

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We are very excited to announce that CureTogether has just won the Emerging Star of Healthcare Engagement Award in the 2011 Healthcare Engagement Strategy Awards.

In the award announcement, Director Daniel Ghinn writes:

“In many ways, CureTogether captures the essence of how the Internet is changing healthcare. A startup operating with just 2½ people, born out of one patient’s frustrated search for answers, the social network has grown to include over 22,000 patients with 549 conditions since it started in 2008….

CureTogether is an example that illustrates how healthcare engagement is changing: not only empowering patients to share experiences with each other, but to develop their own evidence base…

This kind of crowdsourced approach to medical research will at the very least stimulate some healthy discussion, and has the potential to have a significant impact on the relationships between patients, prescribers and pharmaceutical companies…

CureTogether, for applying the power of crowdsourcing to real-time research that touches patients, we award you the Healthcare Engagement Strategy 2011 Emerging Star of Healthcare Engagement Award.”

Thank you to Daniel and all the HES Awards judges! We are much honored.

University of California Davis
April W. Armstrong, MD MPH
Personalized Therapeutics and Evaluation of Treatment Responses in Skin Diseases from Patient-Driven Data (in progress)

Dr. Armstrong and her team will be analyzing CureTogether’s dataset of skin diseases to help us find publishable discoveries faster.

They will also contribute pictures of different severities of skin diseases from real, consented patients, to help CureTogether members identify how severe their skin disease is and find more personalized treatment options.

Dr. April Armstrong is Director of the Clinical Research Unit and Teledermatology Program at the Department of Dermatology at UC Davis, trained at Harvard Dermatology Residency Program and Harvard School of Public Health.

Welcome and thanks, Dr. Armstrong!

Steven Dean, a long-time CureTogether member and Quantified Self organizer in New York City, gives a fantastic overview of his self-tracking, and a Brazilian doctor shares his perspective on the benefit for patients.

It’s in Portuguese with a bit of English. Very exciting to see how this is spreading!

Everyone who is reading this – do something extra nice for yourself to help us celebrate!

Just a quick note to let you all know that CureTogether is a finalist in the Amgen/Changemakers Empowering Patients Competition!!

Thank you for being part of this. Please vote today – we have a good shot at winning the $10,000 grand prize if we get enough votes in the next 13 days. It can be your good deed for the day!

Please take half a minute to cast your vote.

THANK YOU so much!!
Wishing you all a wonderful day,
Alex

Just wanted to share them here too, for full transparency and to see if any of you have ideas for how to help going forward!

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What impact have you had?