CureTogether: The Global Health Data Community

Imagine patients around the world coming together to share quantitative information on over 500 medical conditions. They compare details about sensitive symptoms and which treatments work best for them. They track their health. New research discoveries are made based on the patient-contributed data, which help people make better health decisions.

Patients are helping each other and helping research go forward into their conditions. People without ready access to medical care can get ideas for how to help themselves. This is happening at CureTogether, and we believe it can have a massive global impact.

About You

Organization: CureTogether Visit websitemore ↓↑ hide↑ hide

About You

First Name

Alexandra

Last Name

Carmichael

About Your Organization

Organization Name

CureTogether

Organization Website

Organization Phone

650-533-2163

Organization Address

P.O. Box 391345, Mountain View, CA 94039

Organization Country

United States, CA, Santa Clara County

Country where this project is creating social impact

United States

Is your organization a

For‐profit

How long has your organization been operating?

1‐5 years

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Innovation

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Entry Form title

CureTogether: The Global Health Data Community

What change do you want to bring to the world?

Imagine patients around the world coming together to share quantitative information on over 500 medical conditions. They compare details about sensitive symptoms and which treatments work best for them. They track their health. New research discoveries are made based on the patient-contributed data, which help people make better health decisions.
Patients are helping each other and helping research go forward into their conditions. People without ready access to medical care can get ideas for how to help themselves. This is happening at CureTogether, and we believe it can have a massive global impact.

What are the primary activities of your project?

CureTogether is a website and series of mobile apps that gather patients with 588 medical conditions together to share quantitative health data with each other for collective empowerment and discovery.

CureTogether addresses the following global problems:
1. Under-funded Disease Research. The most popular conditions at CureTogether are chronic diseases, mostly affecting women, that are poorly understood and inadequately funded by research granting agencies.

Our top conditions include migraine, fibromyalgia, vulvodynia, and chronic fatigue syndrome. The NIH research budget for these conditions combined is projected to be $36 million, or less than 5% of its total disease research budget. Considering that migraine alone is the 9th leading global cause of disability in women, the discrepancy is striking.

CureTogether provides a structured way for people to quantify their experiences and conduct their own collective research into these conditions, amplifying existing efforts to find and compare successful treatments.

2. Medically Underserved Communities. With over 5 billion mobile subscriptions worldwide, and yet the WHO estimating that 57 of the poorest countries in the world have a deficit of 2.4 million doctors, nurses and midwives, it’s clear that mobile technology can have a significant impact on the health of people in medically underserved communities.

CureTogether has members in 143 countries, and we are beginning efforts to translate our site into Mandarin, Spanish, Hindi, Arabic, Bengali, Portuguese, Russian, Japanese, Punjabi, German, French, Korean, Italian, Danish, Swedish, and any other languages our members request.

We see the power of CureTogether to be a trusted source of medical information for diagnosis and treatment recommendations, based on comparative, real-world data. It is currently open and accessible to anyone with a smart phone, and we plan to make it available to regular mobile phone users as well.

Data can be segmented by country as well as other metrics like co-morbidities, biomarkers, gender, and age, to maximize personalization and relevance of information offered to people in communities where access to medical knowledge is limited.

3. Embarrassed Isolation. For acute, terminal conditions, such as cancer, patients are often well supported and more likely to be open about their conditions. For chronic, sensitive, and rare diseases, such as depression or endometriosis, there is more of a stigma associated with them, so patients will often suffer in silence rather than risk public embarrassment.

CureTogether provides an anonymous place to connect, where people can safely share information without social risk. We often hear encouraging comments like, "I thought I was the only one with these symptoms!"

4. Unverified Anecdotes. Patients often have to rely on low quality information around them - not only in under-served medical communities, but also on the web. 80% of patients go online to search for medical information, and what they find on many websites may be misleading. We aim to bring rigor to anecdote, giving patients greater confidence and empowerment in managing their health.

What is innovative about your initiative? How is it a new contribution to the field?

1. Quantitative Crowdsourcing. CureTogether is about quantifying the collective patient experience. While other patient support sites focus on stories or information from experts, we focus on quantitative data across 588 patient-contributed conditions. Individual data is private, but anonymized aggregate data is shared openly to maximize discovery.

2. Open Infographics. At over 30 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, which has never been gathered 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 their health over time and share this information with their doctors.

3. Breaking Isolation. CureTogether 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 have been able to replicate associations between infertility and asthma (and other conditions) using only patient-contributed data. As more patients add their voices, we can give more personalized information about what might work for whom.

What stage is your project in?

Operating for 1‐5 years

Tell us about the community that you engage? eg. economic conditions, political structures, norms and values, demographic trends, history, and experience with engagement efforts.

CureTogether's overall community is 60% female, 40% male. Our top 20 condition communities are:

- Anxiety (5,971 members)
- Depression (5,587 members)
- Back pain (5,041 members)
- Allergies (4,761 members)
- Fatigue (4.648 members)
- Insomnia (4,309 members)
- Migraine (3,366 members)
- Irritable Bowel Syndrome (2,802 members)
- Common Cold (2,788 members)
- Acid Reflux (2,716 members)
- Lower Back Pain (2,605 members)
- Acne (2,534 members)
- Aging (2,115 members)
- Neck Pain (2,108 members)
- Eye Floaters (2,042 members)
- Obesity (1,704 members)
- Vulvodynia (1,618 members)
- Knee Pain (1,606 members)
- Chronic Fatigue Syndrome (1,553 members)
- Shoulder Pain (1,536 members)

These are primarily chronic conditions that people live with every day. Many of our members report having been to several doctors and tried many treatments but still finding themselves in pain. Sharing data with each other is a way to access an entirely new source of information - treatment ideas from other patients.

Share the story of the founder and what inspired the founder to start this project

CureTogether co-founder Alexandra Carmichael: I've lived in and around chronic pain my entire life. My mom has suffered with intense migraines for the past 30 years, so I grew up with her in bed for days at a time. I live with vulvodynia (chronic vulvar pain), which I finally solved, after a 10-year odyssey of pain where on some days I couldn't even walk or sit.

It was an extremely embarrassing condition, and I didn't know anyone who had it that I could talk to. Doctors told me they couldn't find anything wrong. I felt afraid and alone, and dove into all the research papers available to figure out what I might have and what do to about it. When I did find a solution, I wanted to share what I had learned with other women going through the same thing. Also, as a scientist, I wanted it to be quantitative - how many people felt better on this treatment vs. that one? I wanted evidence-based answers.

So we put up CureTogether as an experiment, with 3 conditions - vulvodynia, migraine, and endometriosis. I added the symptoms I had, and shared what worked best for me. We soon had requests flooding in for people to be able to add their conditions to the site, so we opened it up and it started to grow.

Now I know 1,521 people with vulvodynia on CureTogether. My mom has 2,917 people with migraine to share ideas with, and has tried some lifestyle changes based on suggestions at CureTogether. We're not alone anymore, and if enough of us come together, we can make real inroads into our conditions. For me, every day I'm not in pain is a day that I can help other people who are.

Social Impact

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Please describe how your project has been successful and how that success is measured

Evidence of CureTogether’s contribution:
1. Global Reach. CureTogether has 30,000 members in 134 countries, who have contributed over 30,000,000 data points across 588 conditions. Each condition has surveys and open results for symptoms, treatments, causes, and side effects.

2. Changed Lives. The real impact of CureTogether can be seen in individual patient stories. Ricky 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 meaning to her days. Another example is Chris, who 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." We often get emails from people like Pam, who said, “Your website is helpful beyond words... I feel connected to people who are suffering from the same symptoms as myself. You have made me feel empowered...”

3. Shared Research. Using patient-contributed data, we have replicated a dozen published disease correlations. We have also released infographics for 20 conditions - scatterplots of treatment effectiveness vs. popularity, which have revealed that the most popular treatments are not always the most effective. We have also discovered a symptom biomarker (dizziness) for migraine that predicts whether patients will negatively respond to a migraine drug (Imitrex).

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.

5. Press recognition. CureTogether has been mentioned or featured in many press articles, listed at http://curetogether.com/blog/about/what-people-are-saying/

How many people have been impacted by your project?

More than 10,000

How many people could be impacted by your project in the next three years?

More than 10,000

Winning entries present a strong plan for how they will achieve growth. Identify your six-month milestone for growing your impact

6 month goals:
1. Reach 50,000 patients
2. Make 20 new discoveries
CureTogether's success will be defined by the number of people we can reach multiplied by the impact we can have on each person.

Task 1

We can reach more patients by translating our site into multiple languages and making the site more engaging to spread by word of mouth. Metrics for this are number of members and number of languages.

Task 2

More research partnerships will help validate our data as useful to research. We will replicate existing studies and make novel discoveries. Metrics are number of research partners and discoveries.

Task 3

More partnerships with health and disease organizations in different countries around the world will also help us reach more patients. Metric here is number of partnerships with disease organizations.

Identify your 12-month impact milestone

2012 impact:
- Reach 100,000 members
- Reach 50 million data points
- Have CureTogether translated into 20 languages
- Expand CureTogether mobile interface for global accessibility

Task 1

Vision with the nation's premier health care delivery organizations, which will give us insight into how our work could be a part of health care delivery and enhance patient-physician relationships.

Task 2

Run a contest for developers to create mobile apps with CureTogether data, designed to be accessible on a wide variety of global devices. A contest will spur innovative ideas to expand our reach.

Task 3

Develop infrastructure for crowdsourcing the translation of CureTogether's condition communities into multiple languages, and recruit members from different countries to help translate the site.

How will your project evolve over the next three years?

In the next three years, we expect to:
- Make 50 discoveries that can benefit millions of people with different health conditions
- Reach 1 million members
- Reach 500 million data points
- Have CureTogether translated into 50 languages and used in 200 countries
- Have 200 trials running, defined by patients and researchers
- Reduce suffering of our members by 50% based on condition severity scores
- Publish demonstrable results to validate the idea of patient-driven research

In addition to the metrics mentioned above, we measure what percentage of visitors to CureTogether convert to members, how engaged our members are in terms of repeat visits, how our results compare to existing studies on epidemiology, comorbidities, biomarkers, and treatment effectiveness/popularity.

Sustainability

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What barriers might hinder the success of your project and how do you plan to overcome them?

With any new technology comes benefit and risk. The potential barriers or unintended consequences that we see for CureTogether include:

1. Selection bias. There is a risk that selection bias will mislead people into trying a treatment where the results on CureTogether may not be representative of the larger population. On the other hand, as more data is added to CureTogether, this effect will tend to decrease over time and CureTogether will increasingly approach population results. This risk is also mitigated by the fact that patients cannot try every recommended treatment, since many require prescriptions from their doctor.

2. Negative publicity. Companies who provide treatments that are negatively rated on CureTogether stand to lose revenue and reputation, which they may find distressing. We do track IP addresses to ensure that companies are not artificially increasing their own product’s ratings. This risk is arguably an overall benefit to society, since it exposes new information about treatment responses that is not easily accessible.

3. Regulatory shutdown. There is a risk that if CureTogether becomes very popular or widespread, regulatory bodies might decide to introduce legislation to prevent patient-initiated or participatory research. Government agencies could also deem sites like CureTogether unsafe and decide that only doctors are allowed to diagnose and provide treatment recommendations to patients. So far, people in both the government and doctor groups have been very supportive. We have been invited to consult with both top government agencies and the Mayo Clinic on the concept of patient-driven research and social media in health.

4. Loss of power. Disease foundations and patient organizations whose funding comes
from providing the kind of information that is now freely available on CureTogether may find themselves losing membership and revenue. They will need to find additional ways to add value. These organizations are also supportive so far: three disease foundations have either promoted our studies or requested that we study their disease.

Tell us about your partnerships

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)

Current annual budget of project, in US dollars

$50,001‐100,000

Explain your selections

CureTogether is a very lean startup, with only 2 full-time people working on it. Its success so far is a testament to how valuable the concept is, because it has really been spreading on its own. We are a social business, inspired by Nobel laureate Muhammad Yunus - our number one goal is to help people and reduce suffering, and we believe we can help more people by being a business than by being a non-profit.

We raised one angel financing round of $50,000, and have achieved all of our results so far with no additional funding. We are experimenting with a number of revenue models, and right now the one that is working most sustainably is partnering with organizations that believe in our work and want to support it - like a grant, but with some custom work such as adding specific disease communities or surveys to the site. We have just signed a major partnership of this kind with a European company, and have a couple more in the wings.

We are very frugal and responsible with money, making each dollar stretch very far. We would be greatly honored to win this award because of the credibility and recognition that it would bring to our community, and because of the validation it would lend to our work. It would help us to continue empowering patients and making new medical knowledge available around the world. As outlined below, all of the money will go directly into projects to benefit the community, for maximum effect of the funds.
We are very grateful to be nominated and considered!

How do you plan to strengthen your project in the next three years?

If selected, we will use the prize money to help us achieve the goals we outlined earlier for the next three years:

1. $5,000 to add features for internationalization and accessibility, since people in developing countries are in greater need and have poorer access to medical information and experts. This includes translation of the site into tens of languages and making it accessible by a wider variety of devices.

2. $2,000 to expand the CureTogether platform to be able to track side effects, contraindications, and expand to more conditions. Being able to collect this additional data will increase the power of our studies to make useful discoveries, especially across multiple diseases.

3. $2,000 to work on generating better algorithms and interfaces for collective discovery. This includes coming up with new kinds of discoveries that we can make, especially as more kinds of data are integrated, and allowing people to define their own self- and group-experiments.

4. $1,000 to help spread the word about CureTogether and secure partnerships. This will involve any necessary travel, marketing, conference attendance, and help with social media. We strive to minimize this aspect though, since we believe it will not be necessary if the site is well-enough designed and produces interesting-enough results. In the event that we do not need to spend this money to spread awareness and secure partnerships, we will divide it among the first 3 categories to maximally benefit our members.

Challenges

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Which barriers to health and well-being does your innovation address?
Please select up to three in order of relevancy to your project.

PRIMARY

Lack of access to targeted health information and education

SECONDARY

Limited human capital (trained physicians, nurses, etc.)

TERTIARY

Lack of affordable care

Please describe how your innovation specifically tackles the barriers listed above.

We believe that facilitating self-measurement and patient-to-patient knowledge transfer will benefit people, whether they have access to health information, physicians, and affordable care or not, by empowering them with knowledge of their own bodies. Also, helping people to be already immersed in their own health if they do need to engage with the health care system can be transformative. The potential transformative effect on health and wellbeing, patient and citizen empowerment, worker productivity, and human connection, is significant. We have consulted with top government agencies on the idea of individuals collecting their own health data, and we see an even greater potential for this innovation to impact developing countries.

How are you growing the impact of your organization or initiative?
Please select up to three potential pathways in order of relevancy to you.

PRIMARY

Grown geographic reach: Global

SECONDARY

Grown geographic reach: Multi-country

TERTIARY

Grown geographic reach: Within host country

Please describe which of your growth activities are current or planned for the immediate future.

1. Translation. With members from 134 countries, we are building an interface for translating CureTogether into other languages. Translating the site will allow more patients in more countries to participate, understand their condition, and connect with other patients, especially if the translation can be crowdsourced by our members who speak different languages.

2. Mobile. We recently released a preliminary mobile interface to CureTogether, with the eventual goal that 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 have and what to do about them, in their own language.

3. Care Delivery. We are consulting with a major health plan to bring social media to their care delivery.

Do you collaborate with any of the following: (Check all that apply)

Academia/universities.

If yes, how have these collaborations helped your innovation to succeed?

Our partnerships with universities are helping to maximize the discoveries that can made from this wealth of patient data - the more eyes look at it, the more people can be helped. These partnerships are critical to our success because they help us to prove concept of crowdsourced research, which has been questioned by traditional research systems. One current study we're doing in partnership with Emory University is a direct comparison of skin disease surveys administered in the clinic vs. at CureTogether, to see how well our online platform works for both recruiting people to join in research studies and gathering data that can be used for research. We are accountable to patients and the public, so we publish all of our discoveries and updates openly to the CureTogether blog.

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150 weeks ago said: This is truly a disruptive concept with a lot of potential. I wanted to know if there was a way to keep up with the progress of your ... about this Competition Entry. - read more >
154 weeks ago Yoshihiko Shiono said: I think this platform can be leveraged to the system to accelerate the R&D of rare diseases that there are around 7,000 diseases in the ... about this Competition Entry. - read more >
159 weeks ago Alexandra Carmichael updated this Competition Entry.
159 weeks ago Alexandra Carmichael updated this Competition Entry.
159 weeks ago Alexandra Carmichael updated this Competition Entry.
159 weeks ago Alexandra Carmichael updated this Competition Entry.
160 weeks ago Alexandra Carmichael updated this Competition Entry.
160 weeks ago Alexandra Carmichael updated this Competition Entry.
160 weeks ago Alexandra Carmichael submitted this idea.