Most Popular

    Sorry. No data so far.


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

Irritable Bowel Syndrome: New Data on Treatments That Work

March 16th, 2011 Alexandra Carmichael Posted in Infographics, Research Findings 8 Comments »

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

If you’re like 15% of the population, you may be living with Irritable Bowel Syndrome, whether you know its name or not. And if you do have this chronic bloating, uncomfortable bowel pain, you may be wondering what to do about it.

Hundreds of people in the same boat have some ideas for you.

At CureTogether, 2,341 people have reported having IBS, and 358 of them have contributed 2,936 data points on their ratings of 49 treatment ideas.

So what works best for patients with IBS? Avoiding foods that cause flare-ups and reducing stress 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. Physical therapy, yoga).

Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness (e.g. fiber supplements, fish oil), 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. Evening primrose oil, Peppermint oil).

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 a series of research findings we’ve been publishing over the past few months. 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 IBS. Thank you!

 

AddThis Social Bookmark Button

Infertility-Asthma Link Confirmed

March 7th, 2011 Alexandra Carmichael Posted in Infographics, Research Findings 1 Comment »

It’s time to start repeating some of our earlier studies to see if they hold up with the larger dataset we’ve now gathered in collaboration with our nearly 25,000 marvelous members.

The very first discovery we announced, back in September 2009, was an association between Infertility and Asthma. The 2009 finding was based on an analysis of 324 members, and revealed that members with Infertility were 1.9x more likely to report Asthma.

We just re-ran the analysis (15 months later), with data from 3,735 members (11.5x larger sample!) and we discovered that… the association still holds.


 

 

The gritty details: within the 253 people reporting infertility, 51 (20%) reported having asthma (the remaining 202 out of 253 specifically said they did NOT have asthma). Within the 3482 people reporting “no infertility”, 504 (14%) reported having asthma (the remaining 2978 specifically reported NOT having asthma).

This 20% vs. 14% relative risk is statistically significant with a 99% confidence interval of 1.1-1.8x. It’s a smaller effect size than our original discovery (1.4x instead of 1.9x), but demonstrates a level of consistency and robustness in the data being gathered.

AddThis Social Bookmark Button

What Patients Say Works Best for ADHD

February 22nd, 2011 Alexandra Carmichael Posted in Infographics, Research Findings 3 Comments »

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

Despite only being recognized as a disease for the past 20 years or so, Attention-Deficit Hyperactivity Disorder seems to be fairly well understood, at least in terms of the effectiveness of treatments that patients report.

At CureTogether, 674 people have reported having ADHD, and 1,069 data points have been shared about treatment ratings.

So what works best for patients with ADHD? Exercise and Adderall 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. Dexadrine, Vyvanse).

Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness (e.g. fish oil, green tea), 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. Strattera, Wellbutrin).

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 the twelfth in a series of infographics we’ve been publishing over the past few months. Of course, with each of these infographics, 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 ADHD. Thank you!

AddThis Social Bookmark Button

Surprising New Data: What Really Helps Patients With Chronic Fatigue Syndrome

February 3rd, 2011 Alexandra Carmichael Posted in Infographics, Research Findings 29 Comments »

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

Chronic Fatigue Syndrome is a puzzle. People with CFS live with incapacitating exhaustion, as well as a host of other unpleasant symptoms, and they often don’t know what to do to feel better.

But I didn’t realize how much of a puzzle CFS really was until I saw this data (in the infographic above). It is such a poorly understood condition that the treatments reported to help most are predominantly lifestyle changes, while the medical treatments are predominantly reported to produce negative effects. This would suggest that medicine today doesn’t know how to effectively treat CFS.

Here at CureTogether, 1,319 people have reported having Chronic Fatigue Syndrome, and 6,524 data points have been shared about symptoms experienced and treatments tried.

So what really helps patients with CFS? Rest, dietary changes, and meditation 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. Low-Dose Naltrexone, Far Infrared Heat).

Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness or, in the red section, actually make things worse (e.g. caffeine, alcohol), and treatments in the lower left quadrant are reported as neither popular nor effective, so you may want to steer clear (e.g. Paxil, Zoloft).

Interesting note: The one lifestyle change that doesn’t seem to help is exercise, which is an anomaly worth further investigation. There is much more to be said about CFS and response to exercise – my co-founder Daniel Reda will discuss this in a future post.

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for over 2 1/2 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 the eleventh in a series of infographics we’ve been publishing over the past few months. Of course, with each of these infographics, there is inherent 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 – or write to me at alexandra@curetogether.com.

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

AddThis Social Bookmark Button

Migraine Symptom Predicts Response to Imitrex

January 11th, 2011 Daniel Reda Posted in Infographics, Research Findings 24 Comments »

When we launched CureTogether in 2008, we believed that if we could simply ask thousands of people about the details of their experience with different health conditions; gather their responses in a structured, quantitative way; and apply the right algorithms to that data; important discoveries would emerge that could reduce needless suffering.

Considering how valuable good health is to all of us, and how much time and money is spent each year to maintain it, it seems incredibly wasteful for millions of people to leave, locked in their heads, detailed knowledge about their experience with conditions, symptoms and treatments.

Migraine was one of the first conditions added to CureTogether, and one for which we’ve gathered the most data. One of the most popular and highest rated treatments is Imitrex (Sumatriptan). Most people who try Imitrex report an improvement in their symptoms, but a significant 11% report feeling “much worse” after taking it.

There are two good reasons why someone with Migraine would want to know how their risk of having a negative reaction compares to the average: 1) Migraines are hard enough to endure on their own – you don’t want a negative reaction to a treatment to make it even harder and 2) Imitrex is expensive – costing as much as $30 per tablet!

We were interested in whether differences in symptoms might account for some people reacting negatively to a treatment that otherwise helped so many people feel better. So, starting with a subset of 38 Migraine symptoms that at least 100 members had reported having, and at least 100 members had reported not having, and for which all members had also provided effectiveness ratings for Imitrex, we segmented members into two groups:

Group A = those who reported having the symptom
Group B = those who reported not having the symptom

We then further segmented these members according to how they rated Imitrex:
- major improvement
- moderate improvement
- no effect or uncertain
- made it slightly worse
- made it much worse

To determine which symptoms had the greatest influence on negative ratings of Imitrex, we calculated, for each row, the negative response ratio (NRR) as follows:

NRR = p(MW|Y) / p(MW|N)

where:
- p(MW|Y) = the fraction of members having the symptom who rated Imitrex “much worse”
- p(MW|N) = the fraction of members NOT having the symptom who rated Imitrex “much worse”

After ranking the symptoms from highest to lowest NRR, ”Vertigo / Dizziness” came out on top, with an NRR of 4.2x.

Among CureTogether members with Migraine, the overall probability of reporting a “much worse” response to Imitrex is 11%. Of those who reported not having “Vertigo / Dizziness”, only 4.0% reported a “much worse” response to Imitrex. Of those who reported having “Vertigo / Dizziness”, 17% reported a “much worse” response. Thus, members who reported “Vertigo / Dizziness” were 4.2x more likely to report a “much worse” response.

To test for significance, we needed to determine the probability that a 4.2x (or more extreme) NRR could be generated by chance, rather than as a result of a genuine influence. Our null hypothesis was that whether someone had, or did not have, Vertigo / Dizziness had no effect on Imitrex ratings. We generated 1 million fake datasets by randomly permuting the User ID’s for Imitrex ratings, pairing members of Groups A and B with real, but random Imitrex ratings, rather than their own, and measuring the NRR each time.

The frequency of a 4.2x NRR within the fake datasets would indicate the probability that the such a value could be generated by chance, assuming the null hypothesis were true. We ran the analysis and plotted the sampling distribution of 1 million NRRs as a histogram:

An NRR of 4.2x would be generated with a probability of 2.44e-4 – i.e. only one in ~4,000 times would we see such a result by chance if the null hypothesis were true. Usually, scientists consider a p-value of < 0.05 to be significant, so this is a very significant result, even if you factor in the fact that we only discovered the 4.2x result after sorting 38 symptoms.

But dizziness is a known side-effect of Imitrex. How do we know that those CureTogether members who tried Imitrex were not just more likely to report dizziness as a side-effect, rather than as a symptom prior to trying Imitrex? How do we know that Vertigo / Dizziness actually predicts response to Imitrex? Well, if it were a side-effect, then we would expect members who tried Imitrex to be more likely to report significantly more Vertigo/Dizziness. Here’s what the data says:

While 76% of those who tried Imitrex (224/293) reported Vertigo / Dizziness, 72% of those who did NOT try Imitrex (246/340) also reported it. There is only a 5% difference between these two groups, in contrast to the 4.2x difference above. While this may seem counterintuitive, keep in mind that the probability of reporting a symptom, given that you have tried a treatment is not the same thing as the probability of giving a treatment a negative rating, given that you’ve had the symptom. p(s|t) != p(mw|s).

Now, there is one caveat – we cannot assume that these results apply to all Migraine sufferers. Although we see promising early indications that CureTogether members are representative of the general population, we are not ready to make that claim conclusively.

Thus, we have demonstrated that, among CureTogether members with Migraine at least, having Vertigo / Dizziness as a symptom increases the chance of reporting a “much worse” response to Imitrex by 4.2x, from 4.0% to 17%.

We are enthusiastic to have this result confirm our initial belief in the power of CureTogether’s approach to health research. We also believe this is the first of many predictive discoveries across the 500+ conditions for which we continue to gather data.

Thank you to our members who took the time to participate in our surveys. And special thanks to Dr. Will Dampier, Research Assistant Professor at Drexel University School of Biomedical Engineering and Health Systems, for his help with the statistical analysis.

AddThis Social Bookmark Button

The Single Best Treatment for the Common Cold

November 29th, 2010 Alexandra Carmichael Posted in Infographics, Research Findings 5 Comments »

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

If you have an after-Thanksgiving cold, this post is for you. When it comes to our old friend the common cold, it turns out that the simplest remedy may be the best.

At CureTogether, 139 people who have experienced the Common Cold have come together to share 1,079 data points about treatments they had tried and how well they worked or didn’t work.

So what is the single best, winning treatment that patients have reported? You guessed it: SLEEP.

To navigate the graph above, the top right quadrant shows the most popular and effective treatments, 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. neti pot, Dayquil).

Treatments in the lower right quadrant are ones that lots of people have tried but that have below-average effectiveness (e.g. Vitamin C, orange juice), and treatments in the lower left quadrant are reported as neither popular nor effective, so you may want to steer clear (e.g. Airborne, whiskey).

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for over 2 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 the tenth in a series of infographics we’ve been publishing over the past few months. Stay tuned for more and please let us know in the comments below if this was helpful or interesting for you – or write to me at alexandra@curetogether.com.

Please tweet, blog, or pass this along to anyone who can benefit or might have a cold. Thank you!

AddThis Social Bookmark Button

For Allergies, Drugs Work Surprisingly Well

September 20th, 2010 Alexandra Carmichael Posted in Infographics, Research Findings 6 Comments »

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

Well, this is a surprise.

In almost every single other infographic we’ve released, lifestyle changes have been at the top of the list of what works best, and drugs have been closer to the bottom. But the story is different for allergies, as you can see in the picture above.

At CureTogether, 260 people with Allergies have come together to share 1,769 data points about treatments they had tried and how well they worked or didn’t work.

So what are the winning treatments that patients have reported? From the infographic above:

avoiding allergens, Benadryl, sinus irrigation, Claritin, and Zyrtec

The top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so they may be options to talk to your doctor about (Prednisone, Xyzal, Cortaid).

Treatments in the lower-right quadrant are ones that lots of people have tried but that have below-average effectiveness, so presumably if fewer people tried these, they would be free to find more effective treatments elsewhere (homeopathy, calcium, acupuncture).

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for over 2 years now. We anonymized, 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 the ninth in a series of infographics we’ll be publishing over the coming weeks. Stay tuned and please give your feedback or thoughts on this result in the comments below – or write to me at alexandra@curetogether.com.

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

AddThis Social Bookmark Button

The Winning Treatments for Fibromyalgia Are… (Not Drugs)

September 9th, 2010 Alexandra Carmichael Posted in Infographics, Research Findings 17 Comments »

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

Imagine being a woman living every day in chronic pain and being super sensitive to pressure or touch on your body. For 2-4% of the population, Fibromyalgia is part of daily existence. The ratio of women to men affected is 9:1, and there is no current cure.

At CureTogether, 376 people with Fibromyalgia have come together to share 1,567 data points about treatments they had tried and how well they worked or didn’t work.

So what are the winning treatments that patients have reported? From the infographic above:

rest, heat, relaxation, dietary changes, and Codeine

The top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so presumably if more people tried these, they would be helped (gluten-free and sugar-reduced diets, codeine).

Treatments in the lower-right quadrant are ones that lots of people have tried but that have below-average effectiveness, so presumably if fewer people tried these, they would be free to find more effective treatments elsewhere (Lyrica, Elavil).

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for almost 2 years now. We anonymized, 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 the seventh in a series of infographics we’ll be publishing over the coming weeks. Stay tuned and please give your feedback or thoughts on this result in the comments below – or write to me at alexandra@curetogether.com.

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

AddThis Social Bookmark Button

Just Released — CureTogether Guide to Back Pain

July 14th, 2010 Alexandra Carmichael Posted in Books, Condition Awareness, Research Findings No Comments »

.

.

You are a part of this.

It’s a new kind of health book that puts real-world data before authority, and teaches you how to make better decisions for your health.

Inside, you’ll find 7 insight-filled sections to help you navigate your way through Back Pain.

Download your copy here, or read on for more details.
.

The Story

Health books are usually written by experts who offer authoritative information about conditions, symptoms and treatments – people who usually don’t live with the condition themselves, but nevertheless tell you what you should do because they know best.

This book is different. It’s based on the real-world experiences of patients. Our approach is not to tell you what to do, but to give you the hard data and the education to help you make your own decisions – to manage your own health. It’s not about doing it alone. It’s about taking control of the process and becoming the primary decision maker when it comes to your health.
.

What’s Inside

  • Do You Have Chronic Back Pain? How To Find Out
  • Getting Diagnosed – What Tests Are Available?
  • Feeling Better – How To Find a Treatment That Works
  • Taking Action – How To Run a Successful Self-Experiment
  • Are You Biased? How To Make The Right Decisions
  • The Numbers – What Patients Have Discovered About Back Pain
  • Bleeding-Edge Research – Top 5 Breakthroughs From Scientists Around the World

Download your copy here. Happy reading!

AddThis Social Bookmark Button

7 Surprisingly Simple Treatments for Female Pain

June 23rd, 2010 Alexandra Carmichael Posted in Infographics, Research Findings 2 Comments »

For the interactive version of this infographic and some statistical geekery, click here.


Women walking around with no underwear?

No, this is not something from an adult site, it’s the treatment reported to be most effective in a live, online survey of 750 patients with vulvodynia (chronic vulvar pain) at CureTogether.

Yes, I also live with vulvodynia, like 18% of US women. And yes, I’ve definitely gone “free” on painful days – it’s not something a doctor ever told me, just something I found really helped.

So what are the 7 surprisingly simple treatments that patients have reported? From the infographic above:

no underwear, ice, physical therapy, “clitoral distraction”, rinsing with water after urination, going gluten-free, and doing Tai Chi

The top left quadrant shows treatments that not many people have tried but that have above-average effectiveness, so presumably if more people tried these, they would be helped (gluten-free diet, Tai Chi).

Treatments in the lower-right quadrant are ones that lots of people have tried but that have below-average effectiveness, so presumably if fewer people tried these, they would be free to find more effective treatments elsewhere (antibiotics, steroid cream).

Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for almost 2 years now. We anonymized, 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 the sixth in a series of infographics we’ll be publishing over the coming weeks. Stay tuned and please give your feedback or thoughts on this result in the comments below – or write to me at alexandra@curetogether.com.

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

AddThis Social Bookmark Button