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.

What makes CureTogether unique?

1. Quantitative Crowdsourcing.

CureTogether is about quantifying the collective patient experience. While most other patient support sites have focused on stories or information from experts, we focus on quantitative data across over 600 patient-contributed conditions. Individual data is kept private, but the anonymized aggregate data is shared openly to maximize discoveries that can be made.

2. Open Infographics.

At over 1 million data points, CureTogether has the largest available real-world comparative effectiveness database available to patients online. It’s deep knowledge shared from individual patient experiences, elevating global patient voices in a way that has never been done before. We help patients learn what treatments are available for their condition (based on what others are trying), and how popular and effective each treatment is reported to be. Patients can also track any measures of their health over time, recording weight, stress levels, pain, mood, and share this information with their doctors.

3. Breaking Isolation.

CureTogether also helps people find and connect with others with whom they share multiple health conditions, which would otherwise be extremely difficult since most health sites are organized around individual conditions. Imagine finding someone who shares 7 conditions with you and being able to ask them private questions.

4. Novel Discoveries.

Finally, we have unique data on co-morbidities. We’ve been able to replicate an association between infertility and asthma (and dozens of other conditions) using only patient-contributed data. As more patients add their voices, we will be able to give more personalized information about what might work for whom.

Patients are helping each other, helping research go forward into their conditions, and helping themselves.

I hope that answers the question!

Life science research should be transparent.

This is exciting news. CureTogether is partnering with Transparency Life Sciences to run a trial on Low-Dose Naltrexone (LDN). Read the letter below for details.

If we have enough initial interest, we will reach out to the CureTogether and LDN communities again to design and participate in these open source clinical studies that will be based on outcomes that are meaningful to you, not just ones that are essential for regulatory approvals.

Do you have a skin disease? If you do, please join the race.

CureTogether is excited to announce a new research project we’re collaborating on. Researchers Suephy Chen, Adam Sperduto, and Bob Swerlick at Emory University are doing a study to compare whether online recruiting methods can beat their traditional in-clinic recruiting methods.

Basically, they want to see whether CureTogether or in-person methods can get more people to answer a skin disease survey. Here’s your chance to help show the power of online communities.

“Please click here if you have been diagnosed with eczema/atopic dermatitis, seborrheic dermatitis, psoriasis, rosacea, or acne and would like to learn more about participating in a clinic research study conducted by the Emory University School of Medicine Department of Dermatology. Thank you!”

We’ll keep you posted on how the race goes!

CureTogether, an online social health community, announced today the launch of its Autism treatment study. CureTogether will provide an online venue for parents with Autistic children to anonymously share and rate the success of their treatments.

“CureTogether is here to do good; we’ve adopted an open-source philosophy for health research,” said CureTogether co-founder Daniel Reda. “Patients and parents have so much knowledge and expertise to share with each other and with the world.”

CureTogether is interested in collecting information about any and all treatments tried including: Anxiety and Depression medications, Chelation and IV therapies, Glutathione, Naltrexone, EDTA, DMPS, DMSA, Detoxification, vitamins B-12, B-6, supplements, Gluten-Free and Casein-Free Diets, Hyperbaric Oxygen Treatments, Stem Cell Therapy, Play Therapy, Music Therapy, etc.

The CureTogether website also allows patients and parents to add therapies that may not be listed. CureTogether’s goal is to provide data back to the Autism community as to the most effective treatment options. Curetogether is completely impartial and not affiliated with any pharmaceutical or healthcare supplier.

Please visit http://www.curetogether.com/autism to participate in the study.

About Autism
Autism is a complex developmental disability that typically appears during the first three years of life and affects a person’s ability to communicate and interact with others. Autism is defined by a certain set of behaviors and is a “spectrum disorder” that affects individuals differently and to varying degrees. There is no known single cause for Autism. According to the Centers for Disease Control and Prevention, 1 in every 110 births in the United States and almost 1 in 70 boys is affected by Autism.

About CureTogether, Inc.
CureTogether is a website that helps people anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research. CureTogether has been featured in Wired (“Empowering Patients”), The New York Times, The Wall Street Journal, and BusinessWeek (“Innovative”). For more information, please visit www.curetogether.com/blog/about or send an email to press(at)curetogether(dot)com.

Patients at CureTogether (http://www.curetogether.com) who report depression are twice as likely to report insomnia than patients with no depression. This is among the first self-reported data that reproduces findings previously done in slow, expensive clinical research. It comes from an analysis of 761 patients, and is being released in conjunction with the TEDMED and BIL:PIL conferences this week – please see the chart, and details below.
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Chart: Patients with depression are more likely to report insomnia than patients with no depression. From patient self-reported data at CureTogether.
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Details of the CureTogether Finding…

Among 533 people reporting depression, 384 (72%) reported also having insomnia, and the remaining 149 specifically reported not having insomnia. Among 228 people reporting “no depression”, 77 (34%) reported having insomnia, and the remaining 151 people specifically reported not having insomnia.
This 72% vs. 34% relative risk is statistically significant, with a 95% confidence interval of 1.7 – 2.5.
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About CureTogether

CureTogether has been called “Yelp for health.” It is a collaboration of people from around the world volunteering to solve real problems in chronic conditions. Patients self-report and rate symptoms and treatments for over 380 conditions. The top conditions at CureTogether are depression, anxiety, depression, back pain, and vulvodynia. More information is at http://www.curetogether.com.
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Depression-Insomnia Research

The importance of this finding is that using only self-reported data, we have found an association between depression and insomnia that has previously been explored only in clinical studies such as the following:
1. In young adults – http://www.ncbi.nlm.nih.gov/pubmed/18457234
2. In the general population – http://www.ncbi.nlm.nih.gov/pubmed/19530979
3. In the elderly – http://www.ncbi.nlm.nih.gov/pubmed/19607762

How can patients’ decisions be optimized? I didn’t know, but I was determined to find out. At a recent Stanford MediaX workshop on Augmented Decision Environments that I was lucky enough to attend, Neil Jacobstein described a continuously improving decision cycle used by the military and based on over 50 years of decision theory.

The steps of the cycle?

Observe -> Assess the situation -> Determine the objectives -> Generate alternate plans -> Project probable outcomes -> Select the best plan -> Communicate and implement the plan -> Validate and improve the model -> back to Observe… and around again, improving the decision process with each loop around the cycle.

In a breakout group, I fleshed out how to apply this cycle to patients, with help from Neil, Matt Butner, and another wonderful contributor who prefers to remain anonymous. We implemented it (above) as a patient user experience flow design.

We are publishing this as an open framework for anyone out there who is helping patients navigate their health. Here is our thought process through the cycle:

A patient has a health concern.

1. Health Data (Observe) – The first step is to gather data from as many sources as possible to get the best observation of the patient. Self-reported data, Personal Health Records, Electronic Medical Records, genome sequence, biosensors, environmental and pscyhological tests are all welcome, and passive data recording is preferred.

2. Probable Diagnosis (Assess the situation) – Next the data is passed through various analyses, from clustering and simple correlations to modeling and more complex Artificial Intelligence methods. The more data collected, the better the models can be. Pooling with known datasets may be one way to reduce error and bias.

3. Personal Goals (Determine the objectives) – As the system learns more about the lifestyle and values of the patient, it feeds this information into a Netflix-like recommendation engine. For example, are they seeking to maximize weight loss or minimize pain?

4. Treatment Engine (Generate alternate plans) – Based on the data, diagnosis, and goals, a series of custom, personalized recommendations is made to the patient including drugs, specific lifestyle/diet changes, and alternative therapies to consider.

5. Probable Outcomes (Project probable outcomes) – As with probable diagnosis, statistical models are applied here to show the patient what she can expect by following each of the recommended treatment plans. Visualizations projecting smoking cessation or decline in quality of life over different timeframes help the patient decide how aggressively she wants to go forward.

6. Personal Plan (Select the best plan) – This is where the patient makes the decision to move ahead on one specific plan. She signs up for the online program with visual analytics to help her see her progress, and the real-world program where smart devices, medications, meals, and resources are delivered to her.

7. Support and action (Communicate and implement the plan) – To help keep her on track, a patient chooses to share her progress with real-time support in social communities, both online and in person. A robotic or virtual personal medical assistant provides reminders and encouragement, and keeps the patient up-to-date on her deliveries of needed supplies.

8. Assessment (Validate and improve the model) – At periodic intervals, the patient checks in and the system matches her current health data to her goals. If necessary, course corrections are suggested and the cycle is iterated again.

I’d love to hear feedback on this model, in the comments below or at alexandra@curetogether.com.

Announced at Mayo Clinic Transforming Healthcare Conference on September 15: Patients at CureTogether who report infertility are 1.9x more likely to report having asthma than patients who don’t report infertility.

This comes from an analysis of 324 patients…

Within the 34 people reporting infertility, 13 (38%) reported having asthma (the remaining 21 out of 34 specifically said they did NOT have asthma). Within the 290 people reporting “no infertility”, 58 (20%) reported having asthma (the remaining 232 specifically reported NOT having asthma).

This 38% vs. 20% relative risk is statistically significant, with a 95% confidence interval of 1.2 – 3.1.

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About CureTogether
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CureTogether has been called “Yelp for health.” It is a collaboration of people from around the world volunteering to solve real problems in chronic conditions. Patients self-report and rate symptoms and treatments for over 360 conditions. The top conditions at CureTogether are depression, anxiety, migraine, back pain, and vulvodynia. More information is at http://www.curetogether.com.

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Infertility-Asthma Research
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The importance of this finding is that using only self-reported data, we have confirmed the infertility-asthma association that has previously been explored only in clinical studies:

1. Asthma was found to be associated with irregular menstruation. http://thorax.bmj.com/cgi/content/abstract/60/6/445

2. Asthma is higher in women with endometriosis (which also has a high correlation to infertility) than in the general population. http://humrep.oxfordjournals.org/cgi/content/abstract/17/10/2715

3. The more siblings you have, the less likely you are to have asthma. http://jech.bmj.com/cgi/content/abstract/56/3/209

4. A big cohort study in the UK found no link between fertility and allergy-related diseases but also said that with asthma in particular there was a different relationship to fertility than with eczema and hay fever. http://aje.oxfordjournals.org/cgi/content/full/165/9/1023#FIG1

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More discoveries will be coming out in the coming weeks. Please comment if you have any questions or ideas, and have a wonderful day!

Over the next few months, these 6 events will bring together patients, researchers, doctors, and health enthusiasts. Discussions, partnerships, and innovations will emerge. Keep your eye on these, and attend if you can!

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1. TEDMED – October 27-30, http://www.tedmed.com
The medical version of the legendary TED conferences. From the TEDMED site: “The fifth in a series created by Marc Hodosh and Richard Saul Wurman, TEDMED celebrates conversations that demonstrate the intersection and connections between all things medical and healthcare related: from personal health to public health, devices to design and Hollywood to the hospital.” This year’s speakers include Dean Kamen, Craig Venter, Sanjay Gupta and Goldie Hawn.

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2. Transform – September 13-15, http://centerforinnovation.mayo.edu/transform
A collaborative symposium at The Mayo Clinic Center for Innovation. From the Transform site: “Transform brings together a dynamic group of speakers and participants from inside and outside the health care industry to explore the intersections between human experience, health care delivery and new business models. Join us to imagine and create innovative ways to deliver a better health care experience in a 21st century world.”

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3. Health 2.0 – October 6-7, http://www.health2con.com
Next-generation health companies and patient advocates converge. From the Health 2.0 site: “With more than a hundred speakers and hundreds of new healthcare demos and technologies on display on stage and in the exhibit hall, you’ll get a sweeping overview of the ways that information technology and the web are changing healthcare in areas from online search to health focused online communities and social networks.”

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4. Web Strategies for Health Communication – July 19-24, http://webstrategiesforhealth.com
A new course by Dr. Lisa Gualtieri at Tufts University School of Medicine. From the Web Strategies site: “The Summer Institute on Web Strategies for Health Communication covers how to develop and implement a Web strategy to drive a health organization’s online presence, specifically the processes for selecting, using, managing, and evaluating the effectiveness of Web technologies for health communication.”

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5. Singularity University – July-August, http://singularityu.org
Graduate studies program started by Ray Kurzweil and Peter Diamandis. From the Singularity University site: “Singularity University aims to assemble, educate and inspire a cadre of leaders who strive to understand and facilitate the development of exponentially advancing technologies and apply, focus and guide these tools to address humanity’s grand challenges.” Biotechnology and Medicine are two of the tracks they offer.

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6. Regenstrief Conference – Sept 23-35, http://www.regenstrief.org/conferences/2009
An invitation-only unconference, but one to watch. From the Regenstrief site: “The theme for this year’s conference is Open Health Methodologies. Participants include: Clay Shirky (open source), Dr. Roni Zeiger (Google Health), and Mark Surman (Mozilla).”

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If you aren’t able to attend, let us know what you think are the most important issues in health today and we’ll make sure to represent your ideas. Good things will come from all the buzz – the future of health care and health research is bright.

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Random Episode Numero 2 from Glenn McElhose on Vimeo.