I’m only one person. How can I possibly impact disease research just by checking off what symptoms I have and what treatments I’ve tried?

If you are thinking this, you’re not alone. The idea of finding cures for human diseases seems like such an enormous challenge that one individual person can feel insignificant. People are donating their spare computer cycles to Stanford’s Folding@home research project, walking for cures, and raising awareness on their blogs. But there must be more to do, some way to get research going faster.

At CureTogether, we believe the secrets to understanding and ultimately curing diseases are locked away inside the bodies of each person who has a condition. By asking patients about their experiences, we can put together a large collection of data and look for patterns. This data is called phenotypic data, or health data, and is complementary to the genotypic or genetic data that is starting to be available as well.

A diagram put together by Nature Reviews (Genetics) summarizes the areas of disease research below:
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The relevant part to look at is the green box in the bottom left corner labeled “Association Studies”. This is where CureTogether comes in, and where each individual can help. Association studies basically look for associations, or connections, between different factors. Genome-wide association (GWA) studies have made some impressive discoveries by looking at genome sequences to statistically link genes to different diseases, including Type 2 Diabetes, Parkinson’s, and Crohn’s Disease. The same thing can be done with enough health data.

So far members can report symptoms, treatments, and possible causes of their conditions at CureTogether. In the coming months we will be adding health tracking to let members chart their progress and contribute their information anonymously to the aggregate pool of research data. With enough individuals coming together in this way, we can do association studies on a number of conditions and make valuable discoveries on the road to finding cures. You can make a difference!

Behind every piece of health data is a person. And every person has a powerful story to tell. We recently invited CureTogether members to anonymously submit their stories, to share their experiences with their conditions. One member wrote in with her story:
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“I’m 39 years old and my endometriosis symptoms began at 13. I was finally diagnosed at 23. In addition to endometriosis, I have multiple other chronic illnesses. My doctors believe many of these conditions are related to my endometriosis. I have participated in endometriosis support groups for 16 years. I have had 6 laparoscopies. I have found alternative medicine very helpful (especially acupuncture)! I have heard many women’s stories: of not being believed by their medical professionals; women who have had their symptoms marginalized or dismissed; women who go from doctor to doctor searching for someone who will truly understand, take them seriously, and help them get relief/manage their symptoms. Many women are not even believed by their own families just how severe and debilitating their symptoms are. There are many wonderful health care professionals out there who treat endometriosis patients. Unfortunately, finding them can be challenging.”
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By sharing stories we realize we are not alone - there are others out there like us, and we can all join forces and help each other. If you would like to share your story, please write to Alexandra. All stories will be posted anonymously.

A new trend is emerging. People are measuring things about themselves, storing them online, generating graphs and looking for patterns in their own data. Some people track their baby’s sleep patterns, others track their driving habits, or even their sex life. Monica Hesse reported on this trend in the Washington Post recently.

It’s a phenomenon WIRED editors Kevin Kelly and Gary Wolf call The Quantified Self. They have a regular Meetup group in the San Francisco Bay Area to discuss these ideas and talk about topics like: Personal Genome Sequencing, Lifelogging, Self Experimentation, and Medical Self-Diagnostics.

This is exciting for us at CureTogether because we’re developing our health tracking component based on excellent feedback from our members on what kinds of things they want to track related to their condition. It will be completely anonymous (unless you choose to share your data with your doctor or family/friends). If you have suggestions for what you’d like to track for your condition, please leave a comment below, or write to us.

Wishing everyone a healthy day.

After receiving a request from the NVA, I decided to submit my personal experience with vulvodynia to EmpowHer.com. It does get into some detail, not for the faint of heart, so be warned!

I wanted to put it out there to let the 6-14 million women with vulvodynia know they’re not alone, and to give a bit of the story behind CureTogether. I have improved significantly since I wrote those words a few months ago, and am now enjoying a pain-free life. So there is hope for all of you living in pain!

You can read my story here, and I’d love to hear yours too.

September is National Pain Awareness month. The Power Over Pain Action Network, a project of the American Pain Foundation, issued this letter to people in pain:

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You can have power over your pain. What a great message, and one that CureTogether wholeheartedly supports. People coming together, learning from each other, contributing to research, feeling better, helping to find cures. For everyone out there in pain today, we are thinking of you.

We’ve been thinking a lot at CureTogether about open source health research and how it can work. Our thoughts have coalesced into a plan, which I’ve written up here and summarized below. It was also listed as a featured article here and included on the Lifeboat Foundation blog.

We’d love to hear your ideas in the comments section. How do you see this working?

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Summary of the Open Source Health Research Plan

Open source has emerged as a powerful set of principles for solving complex problems
in fields as diverse as education and physical security. With roughly 60 million
Americans suffering from a chronic health condition, traditional research progressing
slowly, and personalized medicine on the horizon, the time is right to apply open source
to health research. Advances in technology enabling cheap, massive data collection
combined with the emerging phenomena of self quantification and crowdsourcing make
this plan feasible today. We can all work together to cure disease, and hereʼs how.
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The Elements of Open Source

The State of Health Research

The Open Source Health Research Plan

• Step 1: Define the “source”
• Step 2: Apply the elements
• Step 3: Develop a platform
• Step 4: Build community
• Step 5: Make discoveries

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The Challenges

• Intellectual Property
• Privacy and Security
• Accuracy
• Awareness
• Institutional Resistance

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About the Author
Acknowledgements
References
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You can read the whole report here. Please join the discussion and leave your comments below.

Our own amazing Faren Inglett shares why CureTogether was started, talks about the larger purpose of what we’re doing to help people who are suffering, and explains how you can help and how you can benefit. (Thanks, Faren!)

Do you want to see more videos about the conditions we’re studying? Please let us know by posting a comment.

In support of CureTogether members and visitors from 40 countries who have come to our website, many of whom have invisible chronic illnesses, we recognize Invisible Chronic Illness Awareness Week this week.

According to Improving Chronic  Illness Care, a national project of the Robert Wood Johnson Foundation, nearly half of all Americans, or 133 million people, live with a chronic  condition.*

Globally, while infectious diseases, lack of nutrition, and other traditional killers are claiming fewer lives in developing countries, deaths attributable to chronic diseases are rising.**

The first step is bringing awareness to these invisible chronic illnesses - then we can move on to working together to help eradicate them. If you or someone you know has an invisible illness, make time this week to do something special, and take a minute to spread the word.

*MacColl Institute for Healthcare Innovation. Improving Chronic Illness Care Project.

** Population Reference Bureau. The Growing Global Chronic Disease Epidemic.

1. Many people living with chronic conditions would suffer less if they could learn from the cumulative knowledge and experience of their peers.
2. If you measure yourself over time, you’ll learn valuable things about your health.
3. If you compare your measurements with those of others, you’ll learn even more.
4. If we gather and analyze data from thousands of people, we’ll discover new approaches for diagnosing, managing and treating disease.
5. The more active you are in managing your health, the better you’ll feel.
6. If patients actively participate in research, it will progress more quickly.

“Can you please study my condition?”

In our first month after launch, we have been inundated with people writing in to CureTogether with requests to study conditions, from Diabetes to Depression and everywhere in between. We decided we needed to listen and answer the call.

CureTogether is now open for all conditions, including the universal condition of aging. Anyone can sign up, post and review resources, and share and learn from each others’ experiences. Stay tuned for more exciting updates soon.

About the picture: This powerful image from Time Magazine captures the burden of chronic pain on a person’s body and mind. If you can relate to this feeling, please help spread the word about CureTogether, and let’s get this research going.