CureTogether - Crowdsourced Patient Experience

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CureTogether - Crowdsourced Patient Experience

United States
Organization type: 
for profit
Budget: 
$10,000 - $50,000
Project Summary
Elevator Pitch

Concise Summary: Help us pitch this solution! Provide an explanation within 3-4 short sentences.

Imagine patients around the world coming together to share quantitative information on over 500 medical conditions. They talk about sensitive symptoms and compare which treatments work best for them. They track their health. New research discoveries are made based on the patient-contributed data. This is happening at CureTogether, and we believe it can have a massive global impact.

About Project

Problem: What problem is this project trying to address?

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.

Solution: What is the proposed solution? Please be specific!

1. Quantitative Crowdsourcing. CureTogether is about quantifying the collective patient experience. While other patient support sites have focused on stories or information from experts, we focus on quantitative data across 576 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 almost 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 sharing 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 were recently able to replicate an association between infertility and asthma (and 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.
Impact: How does it Work

Example: Walk us through a specific example(s) of how this solution makes a difference; include its primary activities.

1. Global Reach. CureTogether has 12,000 members in 112 countries, who have contributed almost 1,000,000 data points across 576 conditions. 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." 3. Shared Research. Using patient-contributed data, we have replicated a dozen published disease correlations. We have also released infographics for 7 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.
About You
Organization:
CureTogether
Section 1: You
First Name

Alexandra

Last Name

Carmichael

Organization

CureTogether

Country

, CA, Santa Clara County

Section 2: Your Organization
Organization Name

CureTogether

Organization Phone

650-533-1897

Organization Address

H104-555 W Middlefield Road, Mountain View, CA, 94043

Organization Country

, CA, Santa Clara County

Your idea
Country and state your work focuses on

, CA, Santa Clara County

Innovation
Do you have a patent for this idea?

Impact
Actions

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.

Results

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.

What will it take for your project to be successful over the next three years? Please address each year separately, if possible.

CureTogether's success will be defined by the number of people we can reach multiplied by the impact we can have on each person. Here are some milestones that we have identified for the next three years:

2011:
- Implement self-experimentation protocols on CureTogether
- Form 5-10 new research partnerships
- Develop an interface to CureTogether that can be accessed by a wide range of international mobile devices
- Engage a team of 50 curators

2012:
- Have CureTogether translated into 20 languages
- Reach 100,000 members
- Start our first clinical trial after proper IRB approval

2013:
- Have our research partnerships start publishing their discoveries
- Start 5 new trials
- Show demonstrable research results to validate the concept of patient-driven research

What would prevent your project from being a success?

CureTogether's success would be limited if:
1. We could not reach enough people to achieve statistical significance in our results
2. Government legislation were to prevent patient-initiated or participatory research
3. A more well-funded competitor came out that was able to move more quickly and take over the space

How many people will your project serve annually?

More than 10,000

What is the average monthly household income in your target community, in US Dollars?

$1000 - 4000

Does your project seek to have an impact on public policy?

Sustainability
What stage is your project in?

Operating for 1‐5 years

In what country?

, CA, Santa Clara County

Is your initiative connected to an established organization?

Yes

If yes, provide organization name.

CureTogether

How long has this organization been operating?

1‐5 years

Does your organization have a Board of Directors or an Advisory Board?

Yes

Does your organization have any non-monetary partnerships with NGOs?

Yes

Does your organization have any non-monetary partnerships with businesses?

No

Does your organization have any non-monetary partnerships with government?

No

Please tell us more about how these partnerships are critical to the success of your innovation.

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 looked down upon 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.

What are the three most important actions needed to grow your initiative or organization?

1. Reach more patients. We can do this through translating our site into multiple languages, forming more partnerships with health and disease organizations in different countries around the world, and making the site more engaging to enable spread by word of mouth. This can largely be done through crowdsourced effort and our own time, but may require some outsourced contract work and travel.

2. Do more pilot studies. Forming more research partnerships will help us to validate the data we are gathering as useful and relevant to research. At first we will work on replicating existing studies, to prove the rigor of our model, and then expand to making more novel discoveries. All discoveries are open and released for free to the public, especially to those people whose voices contributed to the new findings. This can be done at essentially zero cost except for time.

3. Find someone who likes to speak about our initiative. Both CureTogether founders are quiet, dedicated people who get easily overwhelmed in social situations. We need to find an energetic person who believes in what we are doing to go around and spread our message at conferences and meetings. We did put out one request to crowdsource one of our upcoming talks, and were surprised to get 3 very qualified people enthusiastically reply! So it may not take a lot of resources to fulfill this task.

The Story
What was the defining moment that led you to this innovation?

I've lived in and around chronic pain for my whole 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), migraine, depression, and a chronic multiple tic disorder. 5 years ago I finally solved my vulvodynia, after a 10 year odyssey of pain where on some days I couldn't even walk or sit (forget about wearing jeans or riding a bicycle or the knife-like feeling of sex).

It was an extremely embarrassing condition, and I didn't know anyone who had it that I could talk to or compare notes with. Doctor after doctor told me they couldn't find anything wrong. I felt very afraid and alone, and eventually dove into all the research papers available on PubMed to figure out what I might have and how I could ask a doctor to diagnose it and treat me. When I did find a solution, I wanted to share everything I had learned with other women who were going through the same thing, since I learned that vulvodynia affects 1 in 6 women at some point in their life. Also, as a scientist, I wanted it to be quantitative - how many people felt better on this treatment vs. that one? The disease forums were good for general support, but I wanted evidence-based answers.

So we put up CureTogether as an experiment, with 3 conditions - vulvodynia, migraine, and endometriosis (which a friend of mine had). I added the symptoms I had, treatments I had tried, and shared what worked best for me. Very quickly we 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. I was surprised to learn that hundreds of medical conditions existed!

Now I know 923 people with vulvodynia on CureTogether and what their collective experience with the condition is like. My mom has 1180 people with migraine to share ideas with, and has tried some new lifestyle changes based on things people suggested at CureTogether. We're not alone anymore, and if enough of us come together, we can make some real inroads into the conditions we live with every day. For me, every day I'm not in pain is a day that I can help other people who are.

Tell us about the social innovator behind this idea.

Alexandra Carmichael is co-founder of CureTogether, a social health collaborative that brings patients with hundreds of conditions together in overlapping data communities. Alexandra has spent 15 years bridging gaps between life science research, internet technologies, chronic pain, design, and business. She previously co-founded bioinformatics software company Redasoft with Daniel Reda and helped to design the first social web application for bioinformatics.

She is currently a Research Affiliate at Institute for the Future, helping to forecast the next decade of health and healthcare. She is also creator of the BodyShock The Future contest for global health and Director of The Quantified Self, a global forum for people who quantify themselves to gather data and learn from each other. She advises a number of startups, and is a prolific Tweeter on topics of health and chronic conditions @accarmichael. Alexandra lives with a handful of chronic conditions herself, and is dedicated to changing the way health decisions are made, using the power of the crowd. She also has a personal goal of helping 10 people every day.

Daniel Reda is co-founder of CureTogether, with 15 years of experience as a social bio-IT entrepreneur. He co-founded Redasoft in 1997 with Alexandra Carmichael to help life scientists visualize complex genetic information and design molecular biology experiments in a simple, visual way, with applications ranging from cancer and AIDS research to potato crop research. Redasoft’s software has been licensed by more than 450 research organizations in 37 countries and was acquired by Hitachi Software in 2006. Daniel also designed the first social web application for bioinformatics.

A former molecular biologist and self-taught programmer, he was named a “Bio-IT Champion” by Bio-IT World and was nominated for MIT Technology Review’s Top 35 under 35 award. Daniel was also the inaugural Chair of the Biotechnology & Bioinformatics track at Singularity University at NASA Ames, co-founded by Peter Diamandis and Ray Kurzweil. His expertise in writing code is matched by his passion for eliminating waste and reducing suffering in the world.

How did you first hear about Changemakers?

Friend or family member

If through another, please provide the name of the organization or company

Twitter