For the live-updated, interactive version of this infographic, click here.

The FDA has approved three drugs for Fibromyalgia, a condition of widespread pain and fatigue that affects 2-4% of the population. The three drugs are Lyrica, Cymbalta, and Savella. At CureTogether, 1,144 patients with Fibromyalgia came together to rate these drugs, among other treatments.

We were surprised to find that patients rate Lyrica, Cymbalta, and Savella as making their Fibromyalgia worse, not better (see the red part of the chart above.)

The treatments that help most, in the top right corner of the chart, are simple lifestyle changes: rest, heat, sleep, stress reduction.

While this is just one study, it suggests that the relative cost (financial and physical pain) of administering FDA-approved Fibromyalgia drugs compared to free, easy lifestyle changes should be considered when choosing a treatment for Fibromyalgia.

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The rest of the results are in the graph above, which is divided into four squares…

- Top right: the most popular and effective treatments (including Rest and Heat)

- Top left: effective treatments that not many people have tried, so they may be options to think about (including LDN and Hydrotherapy)

- Lower right: very popular but not very effective (including Lyrica and Cymbalta)

- Lower left: neither popular nor effective (including Savella and Effexor)

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Where did this data come from? This is the result of a 3-year CureTogether study on Fibromyalgia. To thank everyone for participating, we’re publishing this study openly and freely.

This is part of our regular series of research findings. Of course, with each of these findings, there is a potential bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research.

Please tweet, blog, or pass this along to anyone who can benefit or is interested in Fibromyalgia. Thank you!

For the live-updated, interactive version of this infographic, click here.

Endometriosis was the second condition we started with at CureTogether. We’ve been reluctant to publish this study until now because it’s quite controversial. But with detailed participation from over 1,000 patients, we decided it was time.

What’s the controversy? The #1 patient-rated treatment for Endometriosis is major surgery: hysterectomy.

We heard from some very concerned endometriosis activists about this, who don’t want women to go out and electively undergo such a radical procedure without trying gentler approaches first. So take this as a caveat – we’re not advocating that you get a hysterectomy, we’re just reporting the results of a patient survey.

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The rest of the results are in the graph above, which is divided into four squares…

- Top right: the most popular and effective treatments (including Heat pads and Vicodin)

- Top left: effective treatments that not many people have tried, so they may be options to think about (including Marijuana and Physical therapy)

- Lower right: very popular but not very effective (including Birth control pills and Exercise)

- Lower left: neither popular nor effective (including NuvaRing and Depo-Provera)

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Where did this data come from? This is the result of a 3-year CureTogether study on Endometriosis. To thank everyone for participating, we’re publishing this study openly and freely.

This is part of our regular series of research findings. Of course, with each of these findings, there is a potential bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research.

Please tweet, blog, or pass this along to anyone who can benefit or is interested in Endometriosis. Thank you!

An article came out this week in the New York Times reporting that antibiotics work better than cranberry juice at treating urinary tract infections. This finding came from a research study on 221 women published in The Archives of Internal Medicine.

We decided to look and see what the 1,303 people at CureTogether with UTIs had to say about this. Here’s what we found:

Our results agree with the study! Antibiotics rate as the #1 treatment for UTI, while cranberry juice rates near the bottom for effectiveness. Also, it’s worth noting that our study, while perhaps not as well controlled as the published study, was done at a tiny fraction of the cost, with more patients. And still came to the same conclusion.

For the live-updated, interactive version of this infographic, click here.

A year ago, we published 7 surprisingly simple treatments for female pain. Vulvodynia (chronic vulvar/vaginal pain) was the first condition CureTogether started with back in 2008, because I live with it. I repeated the analysis today, and found 9 treatments that clearly stand out as most effective.

This chart is based on 1,617 women with vulvodynia who answered 8,434 quantitative questions in CureTogether surveys.

The top 9 most effective treatments for vulvodynia are:

1. Wear loose-fitting clothes
2. Physical therapy
3. Ice
4. No underwear
5. Trigger point therapy
6. Avoid sex (or just avoid penetration)
7. Clitoral distraction with vibrator or by hand
8. Myofascial release
9. Rinse with water after urination

Another new thing on this chart: NuvaRing was added as a treatment, and was rated to make vulvodynia much worse instead of better.

To navigate the graph above:

The top right quadrant shows the most popular and effective treatments (e.g. loose-fitting clothes, avoid sex), and the top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so they may be options to think about (e.g. trigger point therapy, oatmeal baths).

Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness (e.g. Lidocaine, antibiotics), and treatments in the lower left quadrant are reported as neither popular nor effective, so you may want to consider this when choosing a treatment (e.g. NuvaRing, Lanacane).

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for almost 3 years now. We analyzed and visualized the data into infographic form to make it more accessible. To thank everyone for their contributions, we’re releasing this result back to the community for free.

This is part of our regular series of research findings. Of course, with each of these findings, there is a potential bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research. Stay tuned for more and please let us know in the comments below if this was helpful or interesting for you.

Please tweet, blog, or pass this along to anyone who can benefit or is interested in vulvodynia. Thank you!

For the live-updated, interactive version of this infographic, click here.

Lower Back Pain is our 12th most popular condition community at CureTogether. 2,398 of you have contributed your experiences with 21 symptoms and 46 different treatments that worked well and didn’t work so well.

We are proud to announce the current results of our Lower Back pain study, in the chart above.

The top patient-reported treatments for Lower Back pain are: Yoga/stretching, Hot tubs, Hydrocodone, Massage, Aleve, and Improved posture.

To navigate the graph above:

The top right quadrant shows the most popular and effective treatments, and the top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so they may be options to think about (e.g. Hot tub, Hydrocodone, anti-inflammatory diet).

Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness (e.g. Vitamin D, Omega 3), and treatments in the lower left quadrant are reported as neither popular nor effective, so you may want to consider this when choosing a treatment (e.g. Neurontin, Lyrica).

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for three years now. We analyzed and visualized the data into infographic form to make it more accessible. To thank everyone for their contributions, we’re releasing this result back to the community for free.

This is part of our regular series of research findings. Of course, with each of these findings, there is a potential bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research. Stay tuned for more and please let us know in the comments below if this was helpful or interesting for you.

Please tweet, blog, or pass this along to anyone who can benefit or is interested in Lower Back Pain. Thank you!

For the live-updated, interactive version of this infographic, click here.

If you’re having trouble sleeping because of a tingling, crawling feeling that gives you an irresistible urge to move your legs, this study may be interesting for you.

At CureTogether, 1,292 people have joined our Restless Legs Syndrome study so far, contributing 1048 data points on treatments that worked and didn’t work for them. Here are the latest results.

So what works best for patients with Restless Legs Syndrome? Standing up and walking around, Mirapex, Clonazepam, Neurontin, Requip, and Potassium supplements take top spots in patient reports.

To navigate the graph above:

The top right quadrant shows the most popular and effective treatments, and the top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so they may be options to think about (e.g. Mirapex, Clonazepam, alternating warm and cool packs).

Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness (e.g. relaxation, Ibuprofen), and treatments in the lower left quadrant are reported as neither popular nor effective, so you may want to consider this when choosing a treatment (e.g. alcohol, Quinine).

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for three years now. We analyzed and visualized the data into infographic form to make it more accessible. To thank everyone for their contributions, we’re releasing this result back to the community for free.

This is part of our regular series of research findings. Of course, with each of these findings, there is a potential bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research. Stay tuned for more and please let us know in the comments below if this was helpful or interesting for you.

Please tweet, blog, or pass this along to anyone who can benefit or is interested in Restless Legs Syndrome. Thank you!

For the live-updated, interactive version of this infographic, click here.

Itchy, dry, red, crusty, flaking skin. Roughly 10% of the population is affected by Eczema. At CureTogether, 952 people have joined our Eczema study so far, contributing 1034 data points on treatments that worked and didn’t work for them. Here are the latest results.

So what works best for patients with Eczema? Triamcinolone, avoiding allergens, moisturizing frequently, Elocon, and avoiding sweating take top spots in patient reports.

To navigate the graph above:

The top right quadrant shows the most popular and effective treatments, and the top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so they may be options to think about (e.g. Triamcinolone, Elocon, Fluocinonide, avoiding sweating).

Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness (e.g. antihistamines, avoiding hair washing), and treatments in the lower left quadrant are reported as neither popular nor effective, so you may want to consider this when choosing a treatment (e.g. homeopathy, phototherapy, tanning).

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for three years now. We analyzed and visualized the data into infographic form to make it more accessible. To thank everyone for their contributions, we’re releasing this result back to the community for free.

This is part of our regular series of research findings. Of course, with each of these findings, there is a potential bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research. Stay tuned for more and please let us know in the comments below if this was helpful or interesting for you.

Please tweet, blog, or pass this along to anyone who can benefit or is interested in Eczema. Thank you!

For the live-updated, interactive version of this infographic, click here.

The daily pain of Rheumatoid Arthritis affects 1-2% of the world’s population, with women three times more affected than men. If you’re one of these people and have questions about how others are treating their symptoms, you’re not alone.

At CureTogether, 151 people joined our Rheumatoid Arthritis study, contributing 1127 data points on treatments that worked and didn’t work for them.

So what works best for patients with Rheumatoid Arthritis? Prednisone, Low Dose Naltrexone (LDN), reducing stress, Celebrex, and Heat take top spots in patient reports.

To navigate the graph above:

The top right quadrant shows the most popular and effective treatments, and the top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so they may be options to think about (e.g. LDN, joint replacement surgery, Epsom salt baths).

Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness (e.g. ibuprofen, vitamin D, glucosamine), and treatments in the lower left quadrant are reported as neither popular nor effective, so you may want to consider this when choosing a treatment (e.g. Chiropractic care, Azulfidine).

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for three years now. We analyzed and visualized the data into infographic form to make it more accessible. To thank everyone for their contributions, we’re releasing this result back to the community for free.

This is part of our regular series of research findings. Of course, with each of these findings, there is a potential bias in patient self-selection and recall. Every research study has some bias, so we present these findings as just what they are – patient-reported data – to stimulate discussion and generate new insights for further research. Stay tuned for more and please let us know in the comments below if this was helpful or interesting for you.

Please tweet, blog, or pass this along to anyone who can benefit or is interested in Rheumatoid Arthritis. Thank you!

Dear everyone,

I’ve been wanting to write this post for a while. Partly to better explain who we are at CureTogether, and partly to advocate for a different way of running a startup.

I’m in a very open state after working with the amazing Gary Wolf to put on the first Quantified Self conference, so now seems like a good time to define and clarify our philosophy – what CureTogether is and what it isn’t.

1. We’re not here to compete.

People tend to assume we’re competing with PatientsLikeMe, MedHelp, MediGuard, 23andWe, HealthTap, Genomera, Edison, Google Health, etc. We’re not. I’d like to hereby give them all a standing ovation for the awesome work they’re doing to help patients. Rather than any one of us “winning”, we need many, many more innovators working on health! Seriously, it’s a giant problem and we need as many brains as possible focusing on it.

2. We’re not in this for money.

As a two-person social business, we run very lean, and don’t have any need for extravagant lifestyles. We’re very happy working out of our one-bedroom apartment. We don’t want venture capital, we aren’t running a stressful race to get acquired and sell out – we just like to get up every day and help patients in a calm, positive way, changing lives and doing what we love to do.

3. We don’t sell your data.

This may be the most common misconception about CureTogether. Your data is your data, totally private for only you to see. Aggregate statistics are made available on our website – for free. Occasionally, we will work with reputable research organizations to get more brilliant minds working on improving everyone’s health, and they sometimes make donations to support our work. In these cases, we may share some of the data we gather, but always take numerous steps to protect our members – both technical (such as removing any potentially identifying data prior to sharing), and legal (requiring researchers to legally bind themselves to not even attempt to personally identify any of our members). Sometimes, we will do custom research studies for companies and get paid for it. In these cases, we never share raw data with them. We only generate reports based on abstracted findings, similar to what we publish openly on our website. We’re also getting funding from prizes and awards, which is a reflection that we’ve built something useful. We chose carefully to be a for-profit company because we can do much more good as a business than if we had to constantly ask for donations.

4. We do want to help.

I live with several chronic conditions, so I understand daily suffering. It’s mostly under control now for me, so I live by the motto that every day I’m not in pain is a day I can help others in pain. Our strength is in thoughtful, powerful analysis and solving very hard problems. So we may not have slick iPhone apps, or a buzzing Twitter account. But we do commit to openly releasing the discoveries that we’re putting our full brainpower on, and we believe we will make some major discoveries to help millions of people suffering – they’re waiting for us, and we feel it every day.

5. We need your help, too.

We’re not into advertising, tricking people into signing up (like one VC tried to get us to do), or social media gimmicks. Daniel and I are also not super social people who go to all the conferences talking about what we do. We prefer to just sit down with our laptops and do the hard work. So if you have any way to help get the word out to more patients, and feel inspired to help, please feel free to go ahead, or let us know how we can empower you (like if you need slides for a talk, or quotes for an article, or whatever.)

OK, that’s all I wanted to say for now. Thanks for reading this, and please leave a comment below if you have a reaction you’d like to share.

Have a wonderful day, and take good care!
Alex
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Alexandra Carmichael
Co-founder, CureTogether

Quintiles asked me to write an essay on patient empowerment for their New Health Report, that was just released. Here’s what I wrote:

When patients are diagnosed with a chronic illness, they face a maze of decisions, questions and options that can be overwhelming. Doctors, insurance providers, pharmaceutical companies and online communities all offer important resources to help patients make these decisions and answer their questions.

But patients do not always realize their own power. Patient voices can be elevated to not only direct their own health and healthcare, but also to influence the development of new treatments, decide how value is defined in healthcare and improve the perception of patients as knowledgeable participants in the conversation about their own health.

As patients are the experts at understanding their own bodies, especially for chronic conditions (living with a chronic illness every day, trying every possible treatment, knowing what works and what doesn’t, connecting with other patients), there is a wealth of knowledge and expertise in these bodies and minds that is untapped.

Patients can influence which treatments are developed for which conditions, by speaking up loudly enough for themselves, and which ones are discontinued because of, say, too many adverse effects. By the same token, pharmaceutical companies, insurance companies and doctors will increasingly need to realize the decision-making power of patients, and take the time to understand patient needs, demonstrate the value of new treatments to them and involve patients in the healthcare conversation. Patients are willing to do more, but need to be trusted and enabled to do so.

How can patients impact drug development? There is a definite trend towards patients increasingly taking active control of their health, sharing information about treatments with each other and seeing the healthcare system as a partner in making decisions. Patient-reported comparative effectiveness studies and the power of patient activism will play increasingly significant roles in the success or failure of new therapies.

What can players in the rest of the healthcare space do to intersect with and make the most of this increasing trend? Some ideas to consider are to start by going where empowered patients gather—in online patient communities, social media and patient advocacy groups. Tap into how patients experience their conditions and how they feel about the treatments they try—what are their emotional, social, financial, lifestyle and health needs?

A focus on understanding and empowering patients will help all health stakeholders to better meet the needs of their customers, maintain a positive reputation going forward, and improve quality of care. Everybody wins when patients are empowered instead of overwhelmed.