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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

CureTogether’s Impact and Strategy

October 18th, 2010 Alexandra Carmichael Posted in Random Company News 6 Comments »

For our recent entry into the Ashhoka Changemakers competition for Empowering Patients, I had to answer some great questions about where CureTogether is today and where we’re going.

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?

1. Global Reach. CureTogether has 15,000 members in 112 countries, who have contributed 1.3 million data points across 625 conditions.

2. Changed Lives. The real impact of CureTogether can be seen in individual patient stories. One of our members is bed-ridden 22 hours a day with Ehlers-Danlos Syndrome, a connective tissue disorder. She has a computer screen mounted over her bed and an assistive keyboard to help her function online. Being an active member and curator at CureTogether has given added meaning to her experience. Another member lives with Bipolar Disorder. He uses CureTogether to track his mood and other symptoms. He shares this information with his therapist regularly, and says, “CureTogether seriously changed my life.”

3. Shared Research. Using patient-contributed data, we have replicated a dozen published disease correlations. We have also released infographics for 9 conditions – scatterplots of treatment effectiveness vs. popularity, which have revealed that the most popular treatments are not always the most effective.

4. Empowered Trials. This is a future impact we hope to have. CureTogether has already received recognition from the clinical trial community, both pharmaceutical companies and research organizations who want to both recruit patients and do clinical trials differently. It’s a brand new space – leveraging online communities for new research paradigms. We are currently in discussions with a cross-disciplinary team about an idea to conduct open clinical trials to repurpose existing drugs for new indications. We also plan to open up more self-experimentation features on CureTogether.

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What problem are you solving?

1. Under-funded Diseases. The most popular conditions at CureTogether are chronic diseases, mostly affecting women, that are pororly understood and inadequately funded by research granting agencies. Our top conditions include depression, migraine, vulvodynia, and chronic fatigue syndrome. CureTogether helps people share their experiences and eventually do their own research into these conditions, amplifying research efforts to find successful treatments.

2. Embarrassed Isolation. For acute, terminal conditions, patients are supported and more likely to be open about their conditions. For chronic, sensitive, and rare diseases, there is more of a stigma associated with them, so patients suffer in silence. CureTogether provides an anonymous place to connect, and we often hear “I thought I was the only one with these symptoms!”

3. Unverified Anecdotes. Patients often have to rely on low quality information around them – on the web and in under-served medical communities. We hope to bring some rigor to anecdote.

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What actions are you taking to solve these problems?

1. Partnering with universities and disease foundations. CureTogether has formed research partnerships with Stanford, Emory, Carnegie Mellon, and Drexel Universities, as well as the University of Electro-Communications in Tokyo. We are also currently working with skin disease foundations to help conduct research into skin diseases.

2. Members as curators. CureTogether has upgraded our most active patients to curator status, to help us manage the deluge of data. Curators discuss standards with us and help to ensure that our data is clean, accurate, and representative of the conditions we study.

3. Translation. With members from 112 countries, we are looking into options for translating CureTogether into other languages. This will help more people around the world to share, understand their condition, and connect with other patients.

4. Exploring clinical trial options. We are actively discussing how to best elevate patients’ voices in the clinical trial space – either by starting trials ourselves to help repurpose existing drugs, or by allowing patients to start their own trials, with proper support and guidance.

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What results do you expect from these actions?

1. Partnering with universities and disease foundations will help us to make new discoveries faster, and to ask better questions about our patients’ data. These partnerships will also help to validate that online methods for data gathering are effective for research purposes.

2. Engaging members as curators will help us to maintain a standard of rigorous, high-quality data as we scale to a larger population of patients.

3. Translating the site will allow more patients in more countries to participate, especially if the translation can be crowdsourced by our members who speak different languages. With a mobile interface to CureTogether, people in developing countries without access to adequate medical care will be able to use their cell phones to learn more about the health problems they are having and what to do about them, in their own language.

4. Exploring clinical trial options will help us take the next step in empowering patients to really engage in participatory research, and have a significant impact on their own conditions instead of waiting hopelessly on the sidelines for someone else to help them.

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If you have any thoughts on how we can move forward on any of these fronts, please let us know. Thanks!

Related Posts

How CureTogether Is Unique

Quantifying CureTogether

Crowdsourced Patient Experience

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New Feature: Track Your Lab Test Results

October 4th, 2010 Alexandra Carmichael Posted in Random Company News 3 Comments »

We are excited to announce a new feature at CureTogether – tracking your lab test results!

Here are a few words about it from my co-founder Daniel Reda:

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“As you all know, we initially built CureTogether to help people share their experience with thousands of symptoms and treatments in a structured, quantitative way across hundreds of conditions. We already had limited day-to-day tracking of health data and realized that extending this was going to provide the next level of insight to you.

So we decided to build a whole new infrastructure to help members input lab test results, and chart those over time so that you could observe trends not only in your self-reported data, but also more objective data coming from traditional lab tests.

We first made it so that members can input data manually – as there are far more people with printed lab test results at home than with digital PHRs. However, we built it so that if people request it, it can easily import data from PHRs such as Google Health or HealthVault via their respective APIs.

Above is a screenshot of the new “Lab tests” feature on CureTogether, which only has 2-3 data points for each lab test listed, but it supports any number of results you wish to enter. In addition, as with the rest of CureTogether, we’ve made it easy for any member to add new lab tests that we haven’t already listed.”

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We hope you enjoy this new feature! Please let us know what you think below.

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Quantifying CureTogether

September 23rd, 2010 Alexandra Carmichael Posted in Random Company News 4 Comments »

Yes, thank you to all our members who inspire us every day!! Here are some fun and amazing CureTogether facts, for those of you who like numbers:

1. This is our 100th blog post

2. We now have over 1 million data points

3. As of this minute, we have 13,502 awesome members in 112 countries

4. CureTogether has over 600 member-submitted health conditions

5. We’ve been live on the web for 820 days

6. Our top condition is Anxiety, with over 2,000 people reporting it

7. People have entered 2,657 different treatments they’ve tried, with Exercise being #1

8. Infographics have been released so far on effective treatments for 9 conditions

9. We’re still 2 people working from home, amazed at the power of bringing people together to share data and solve problems

10. What else do you want to know about CureTogether? Ask away in the comments below.

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CureTogether Honored with Amgen/Ashoka Changemakers Award

September 6th, 2010 Alexandra Carmichael Posted in Events, Random Company News No Comments »

We are so excited!

CureTogether’s entry into the Ashoka Changemakers patient empowerment competition won the Early Entry Prize for best idea entered by the early deadline!

From the competition website:

The Amgen Foundation is supporting the Patients| Choices| Empowerment competition with Ashoka’s Changemakers to answer the question of how we can elevate patients’ voices to improve health outcomes globally.

Submit your solutions, or nominate a project, in this challenge that empowers patients to make decisions with confidence and clarity, in concert with people who care and can help.

Congratulations to the Early Entry Prize winner: CureTogether – Crowdsourced Patient Experience. Learn how they are working to empower patients HERE.

Prizes: Enter before the competition deadline of 5PM EDT on September 29, 2010 and you may be one of three winners that receive USD $10,000 to advance your project.

If you have a minute, please help by leaving a comment on our entry page - it will help us have a better chance of winning the competition.

Thank you for your help! :)

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The Future of Health in 2020

August 19th, 2010 Alexandra Carmichael Posted in Presentations, Random Company News No Comments »

IFTF’s HealthCare 2020 map – click here for the full version


Our friends over at Institute for the Future have released their vision of health and healthcare in 2020. We’re excited that CureTogether is included on their map!

They placed CureTogether at the intersection of taking a Commons approach (self-organized participatory solutions that bring a new culture of cooperation) to Making Information Actionable (filtering and integrating health-related information in meaningful ways).

What do you think of their vision for the future of health and healthcare?

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New Feature: Talk to Your Closest Health Matches

August 14th, 2010 Alexandra Carmichael Posted in Random Company News 8 Comments »

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Imagine being able to talk to someone who shares the same 7 conditions you have. What if they’re also your age? They could be going through the same thing every day that you do.

You start to wonder, is their experience the same as yours? Do they have the same symptoms? What treatments are they trying? Do they also have the same side effects as you?

In a new feature released at CureTogether this week, now you can not only find people that are your closest health matches, but you can send them a private message to ask them these questions. They can respond privately to you, and you can both choose what information to share with each other.

To start talking, just log in to CureTogether, and click on the “Connect” link on the right menu of your home page. You’ll see a list of people to connect with and a “Send a private message” button to click.

Please let us know how you like this new feature and how we can improve it. We hope it helps. Happy connecting!!

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Welcome, CureTogether Curators!

August 6th, 2010 Alexandra Carmichael Posted in Random Company News No Comments »

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We’re excited to announce a new development at CureTogether. Our most active contributing members have been upgraded to official Curators!

Amazing people like Ricky Buchanan in Melbourne, Australia (pictured above and found at http://notdoneliving.net/) are combing through CureTogether data. They are carefully checking for accuracy, duplicate entries, and generally helping to make sure that the information we have for our over 500 conditions is the highest quality it can be. This enables more discoveries that we can share with our condition communities and the larger public.

Ricky and people like her are the reason CureTogether was started, and we are so grateful and glad to welcome the support of these inspiring heroes. Thank you!!

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The Skin Disease Race is ON!

July 19th, 2010 Alexandra Carmichael Posted in Open Source Research, Random Company News 1 Comment »

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!

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New: Online Autism Treatment Study

April 27th, 2010 Alexandra Carmichael Posted in Condition Awareness, Open Source Research, Random Company News No Comments »

This press release went out this morning:

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.

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First Birthday Contest: What’s Your Cure?

July 30th, 2009 Alexandra Carmichael Posted in Events, Perspective, Random Company News 1 Comment »

CureTogether is 1 year old this month! To celebrate and thank our amazing members and supporters, we’re giving away free T-shirts.

Create a video (under 1 minute) on how you cured yourself, how CureTogether has helped you, or any cure-related theme. The best 20 videos get this beautiful T-shirt! Picture 6.jpg

To enter, upload your entry to YouTube or any video-sharing site by August 13 and send the link to Alexandra at alexandra@curetogether.com.

Good luck!

News Update

CureTogether was also mentioned in these articles recently – many thanks to the authors and readers who keep encouraging this work!

Wired: “Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365

Wall Street Journal: “Health Data Proves Contagious on Social Media

Brainandspinalcord.org: “A Novel Approach to Self-Empowered Healthcare

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