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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

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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6 Responses to “CureTogether’s Impact and Strategy”

  1. I think the idea of CureTogether participating in research/trials is BRILLIANT and I would be overjoyed to be involved. It’s really showing the robustness of your data that you’ve been able to replicate others’ research too, which must be really gratifying :)

    Keep up the great work!

    r

  2. Hooray, thanks so much Ricky! :)

  3. Super-tight writing, Alex. Thanks for modeling!

  4. Richard Todino Says:

    I have what doctors tell me is M.S. one Dr. told me it’s Lyme ,
    many rounds of antibiotics did not help a Western Blot test showed basic lyme. But a nurologist said maybe both I’m lost need some help !! Any ideas?
    I have many Leasions on my spine and head . I also have Trigeminal Neuraligia. Twiching face pain as I type this I’m in pain .I take Tegretol 100 -200 mg a day and 500 mg Neurontin I’m still in pain . Will L.D.N. agrevate my trigeminal Neuraligia or calm it down /cure it ? Need answers. Thanks
    rick710@verizon.net

  5. Hi Richard,
    Thank you for your comment – I’m sorry to hear about what you are going through. You might find our blog post on LDN useful (as well as the comments) – http://curetogether.com/blog/2010/09/13/new-study-low-dose-naltrexone/
    Wishing you all the best,
    Alexandra

  6. Nancy Olmezer Says:

    I have had great success with LDN for my colitis. I had lived on and off steriods and MP’s all with terrible side effects and short term relief for over 10 years. My Holistic MD as well as my Environmental Allergist suggested LDN but my Gastro would not consider it as a viable treatment. Needless to say I went behind his back and have had geat success for almost 2 years now with no flair ups until now. I had stopped taking it regularly so I have had a set back. I have restarted the treatment!! I recently read LDN also helps with my Fibromyalgia. How amazing it would be to treat both autoimmune disease’s with 1 treamtment.

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