MedWorm provides a medical RSS filtering service. Over 6000 RSS medical sources are combined and output via different filters. This feed contains the latest medical blog items that have been tagged with 'curetogether'. Sat, 03 Sep 2011 02:33:35 +0100 http://www.medworm.com/index.php?rid=5174714&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F08%2F29%2F6100-patients-with-anxiety-report-what-treatments-work-best%2F 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 Anxiety. Thank you! (Source: The Collective Well) The Collective Well blogs http://www.medworm.com/rss/comments.php?id=5174714 Mon, 29 Aug 2011 13:59:43 +0100 5174714 http://www.medworm.com/index.php?rid=5159322&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F08%2F22%2F27-treatments-for-neck-pain-live-patient-study%2F For the live-updated, interactive version of this infographic, click here. Neck pain affects 15% of Americans, according to a report by the American Pain Foundation. Interestingly, the same report mentions that less than 2% of the NIH research budget is dedicated to pain. At CureTogether, 2,180 people with neck pain came together to do their own research on the comparative effectiveness of 27 different treatments. Here are the current results of this ongoing study. Patients rate Myofascial release, Yoga, and Massage as the most effective treatments for their neck pain (see the top points on the chart above.) The treatments that help the least, at the bottom of the chart, are: Soft collar, Tempurpedic pillow, and Corticosteroid injections. As in many of our other studies, it is non-dru... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=5159322 Mon, 22 Aug 2011 23:19:17 +0100 5159322 http://www.medworm.com/index.php?rid=5139954&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F08%2F16%2Fneuropathy-study-results-800-people-rate-35-treatments%2F For the live-updated, interactive version of this infographic, click here. The scattering of points on this chart suggests that Neuropathy is a poorly understood condition. Why? Well, if it was well understood how to treat Neuropathy, the most effective treatments would also be the most popular, and there would be a nice straight line of points from the top right to the bottom left. Instead, there’s a wide scatter, with some patients finding unpopular solutions that are very effective. At CureTogether, 803 patients with Neuropathy came together to rate 35 treatments. Here are the current results of this ongoing study. Patients rate Cymbalta, Neurontin, TENS, and Capsaicin cream as making their Neuropathy worse, not better (see the red part of the chart above.) The treatments that h... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=5139954 Wed, 17 Aug 2011 00:23:09 +0100 5139954 http://www.medworm.com/index.php?rid=5118763&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F08%2F10%2Fpatients-say-fibromyalgia-drugs-make-things-worse-rest-is-best%2F 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 Fibromyalg... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=5118763 Wed, 10 Aug 2011 22:45:39 +0100 5118763 http://www.medworm.com/index.php?rid=5096498&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F08%2F02%2F1000-patients-rate-54-treatments-for-endometriosis%2F 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. – ... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=5096498 Wed, 03 Aug 2011 00:15:47 +0100 5096498 http://www.medworm.com/index.php?rid=5069584&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F07%2F26%2F9-most-effective-vulvodynia-treatments%2F 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 Anot... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=5069584 Tue, 26 Jul 2011 16:07:16 +0100 5069584 http://www.medworm.com/index.php?rid=5008384&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F07%2F05%2Flower-back-pain-study%2F 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,... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=5008384 Tue, 05 Jul 2011 14:49:01 +0100 5008384 http://www.medworm.com/index.php?rid=4975996&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F06%2F27%2Frls%2F 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 pe... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=4975996 Mon, 27 Jun 2011 22:22:25 +0100 4975996 http://www.medworm.com/index.php?rid=4658439&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F03%2F30%2Ftop-15-treatments-for-mitral-valve-prolapse%2F For the live-updated, interactive version of this infographic, click here. Heart palpitations, fatigue, anxiety, a feeling of dread, shortness of breath, trouble sleeping. For most people with Mitral Valve Prolapse, symptoms are mild, but often uncomfortable enough to want to do something about it. Fortunately, there are simple lifestyle changes that help, as well as medications. At CureTogether, 460 people have reported having MVP, and 227 of them have contributed 2,526 data points on their ratings of 37 treatment ideas. Here are the top 15 treatments for Mitral Valve Prolapse, as rated by people living with it: 1. Avoid caffeine 2. Air conditioning 3. Avoid alcohol 4. Drink lots of water 5. Diet changes 6. Meditation 7. Xanax 8. Avoid sugar 9. Beta blockers 10. Eat salt 11. Cognitive t... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=4658439 Wed, 30 Mar 2011 19:02:39 +0100 4658439 http://www.medworm.com/index.php?rid=4631543&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F03%2F24%2Fnew-genetic-data-added-to-curetogether-research%2F   I read recently about the idea of a “data donor” – someone who decides to donate their data to disease research rather than the more customary financial contribution. In the future, as people gather more and more information about themselves, and learn the value of this data, I think that data donorship will become widespread. At CureTogether, we’ve just added the ability for our members to upload their 23andMe genetic data to add to the research we’re doing. People are already eagerly adding their genetic data, and once we have enough genomes, we can start making discoveries towards understanding how our genes influence what symptoms we have and what treatments work for us. In the screenshot above, you can see the interface for uploading your 23andMe d... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=4631543 Thu, 24 Mar 2011 14:48:56 +0100 4631543 http://www.medworm.com/index.php?rid=4600637&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F03%2F16%2Fibs-what-really-works%2F 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 th... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=4600637 Wed, 16 Mar 2011 19:02:36 +0100 4600637 http://www.medworm.com/index.php?rid=4549805&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F03%2F04%2Fcuretogether-goes-mobile-new-treatment-finder-and-symptom-checker-apps%2F                                     At long last, after many requests, we have made a mobile version of CureTogether. It works across all platforms, and you can access it by going to http://curetogether.com with your mobile device. We’ve built two apps to get the ball rolling, and more will be released as we go. With Treatment Finder, you can quickly look up the top patient-reported treatments for any of our 500+ conditions. And with Symptom Checker, you can do the same thing for patient-reported symptoms.                                 Here’s what they look like for Anxiety, our most popular condition commu... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=4549805 Fri, 04 Mar 2011 16:26:44 +0100 4549805 http://www.medworm.com/index.php?rid=4450359&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F02%2F08%2Fnew-condition-scores-to-compare-your-severity-to-others-at-curetogether%2F New Feature at CureTogether: Scores for Your Conditions Ever wonder how you compare to other people with your condition? Are your symptoms worse than the average, or better? Well, now you can find out. We’ve just released a major update to CureTogether that gives you a score for each condition you reported and compares you to all other members with those conditions at CureTogether. In the screenshot above, you can see that for each condition, there are two blue gradients. The one on the left indicates your severity score (how mild or severe your condition is), and the one on the right shows your percentile (how your score compares to other CureTogether members). So for Depression, if you have a score of 65, that indicates a moderate severity, which is more severe than 89% of people a... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=4450359 Tue, 08 Feb 2011 21:57:51 +0100 4450359 http://www.medworm.com/index.php?rid=4433161&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F02%2F03%2Fsurprising-new-data-what-really-helps-patients-with-chronic-fatigue-syndrome%2F 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... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=4433161 Thu, 03 Feb 2011 17:18:19 +0100 4433161 http://www.medworm.com/index.php?rid=4419246&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F01%2F31%2Fcuretogether-wins-emerging-star-of-healthcare-engagement-award%2F . We are very excited to announce that CureTogether has just won the Emerging Star of Healthcare Engagement Award in the 2011 Healthcare Engagement Strategy Awards. In the award announcement, Director Daniel Ghinn writes: “In many ways, CureTogether captures the essence of how the Internet is changing healthcare. A startup operating with just 2½ people, born out of one patient’s frustrated search for answers, the social network has grown to include over 22,000 patients with 549 conditions since it started in 2008…. CureTogether is an example that illustrates how healthcare engagement is changing: not only empowering patients to share experiences with each other, but to develop their own evidence base… This kind of crowdsourced approach to medical research will at the v... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=4419246 Tue, 01 Feb 2011 02:34:39 +0100 4419246 http://www.medworm.com/index.php?rid=4372109&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2011%2F01%2F19%2Fannouncing-uc-davis-teledermatology-partnership%2F We are excited to announce a new academic research partner at CureTogether! 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) Dr. Armstrong and her team will be analyzing CureTogether’s dataset of skin diseases to help us find publishable discoveries faster. They will also contribute pictures of different severities of skin diseases from real, consented patients, to help CureTogether members identify how severe their skin disease is and find more personalized treatment options. Dr. April Armstrong is Director of the Clinical Research Unit and Teledermatology Program at the Department of Dermatology at UC Davis, trained at Harvard Dermatology Residency Progr... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=4372109 Wed, 19 Jan 2011 14:17:23 +0100 4372109 http://www.medworm.com/index.php?rid=4294794&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F12%2F28%2Fhealth-tracking-goes-to-brazil%2F Here’s a video clip from RedeTV!, one of Brazil’s biggest TV stations. Steven Dean, a long-time CureTogether member and Quantified Self organizer in New York City, gives a fantastic overview of his self-tracking, and a Brazilian doctor shares his perspective on the benefit for patients. It’s in Portuguese with a bit of English. Very exciting to see how this is spreading! (Source: The Collective Well) The Collective Well blogs http://www.medworm.com/rss/comments.php?id=4294794 Tue, 28 Dec 2010 20:41:10 +0100 4294794 http://www.medworm.com/index.php?rid=4179381&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F11%2F18%2Fplease-vote-and-help-curetogether-win-10000-in-the-amgen-changemakers-contest%2F Hi everyone, Just a quick note to let you all know that CureTogether is a finalist in the Amgen/Changemakers Empowering Patients Competition!! Thank you for being part of this. Please vote today – we have a good shot at winning the $10,000 grand prize if we get enough votes in the next 13 days. It can be your good deed for the day! Please take half a minute to cast your vote. THANK YOU so much!! Wishing you all a wonderful day, Alex (Source: The Collective Well) The Collective Well blogs http://www.medworm.com/rss/comments.php?id=4179381 Thu, 18 Nov 2010 16:58:46 +0100 4179381 http://www.medworm.com/index.php?rid=4077371&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F10%2F18%2Fcuretogethers-impact-and-strategy%2F For our recent entry into the Ashhoka Changemakers competition for Empowering Patients, I had to answer some great questions about where CureTogether is today and where we’re going. Just wanted to share them here too, for full transparency and to see if any of you have ideas for how to help going forward! . What impact have you had? 1. Global Reach. CureTogether has 15,000 members in 112 countries, who have contributed 1.3 million data points across 625 conditions. 2. Changed Lives. The real impact of CureTogether can be seen in individual patient stories. One of our members 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 membe... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=4077371 Mon, 18 Oct 2010 11:41:22 +0100 4077371 http://www.medworm.com/index.php?rid=4031334&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F10%2F04%2Fnew-feature-track-your-lab-test-results%2F We are excited to announce a new feature at CureTogether – tracking your lab test results! Here are a few words about it from my co-founder Daniel Reda: . “As you all know, we initially built CureTogether to help people share their experience with thousands of symptoms and treatments in a structured, quantitative way across hundreds of conditions. We already had limited day-to-day tracking of health data and realized that extending this was going to provide the next level of insight to you. So we decided to build a whole new infrastructure to help members input lab test results, and chart those over time so that you could observe trends not only in your self-reported data, but also more objective data coming from traditional lab tests. We first made it so that members ca... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=4031334 Mon, 04 Oct 2010 21:38:33 +0100 4031334 http://www.medworm.com/index.php?rid=4018250&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F09%2F29%2Fhow-curetogether-is-unique%2F I get this question so often that I thought I’d just write it up in a post, so here goes! What makes CureTogether unique? 1. Quantitative Crowdsourcing. CureTogether is about quantifying the collective patient experience. While most other patient support sites have focused on stories or information from experts, we focus on quantitative data across over 600 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 over 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 ... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=4018250 Thu, 30 Sep 2010 03:57:27 +0100 4018250 http://www.medworm.com/index.php?rid=3994066&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F09%2F23%2Fquantifying-curetogether%2F Yes, thank you to all our members who inspire us every day!! Here are some fun and amazing CureTogether facts, for those of you who like numbers: 1. This is our 100th blog post 2. We now have over 1 million data points 3. As of this minute, we have 13,502 awesome members in 112 countries 4. CureTogether has over 600 member-submitted health conditions 5. We’ve been live on the web for 820 days 6. Our top condition is Anxiety, with over 2,000 people reporting it 7. People have entered 2,657 different treatments they’ve tried, with Exercise being #1 8. Infographics have been released so far on effective treatments for 9 conditions 9. We’re still 2 people working from home, amazed at the power of bringing people together to share data and solve problems 10. What else do you w... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3994066 Thu, 23 Sep 2010 11:50:15 +0100 3994066 http://www.medworm.com/index.php?rid=3987125&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F09%2F20%2Fallergies-infographic%2F 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 th... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3987125 Mon, 20 Sep 2010 21:11:21 +0100 3987125 http://www.medworm.com/index.php?rid=3972983&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F09%2F15%2Fcrowdsourced-patient-experience%2F This is for you. As part of our entry for the Ashoka Changemakers’/Amgen Foundation Patients| Choices| Empowerment competition, we put together this video with stories from some of our members. It’s to thank you and show you how people are being helped and how we’re moving forward. I hope you enjoy it! Please also feel free to enter a comment at the Ashoka site to show your support for CureTogether winning the competition. Thanks!! (Source: The Collective Well) The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3972983 Thu, 16 Sep 2010 03:27:42 +0100 3972983 http://www.medworm.com/index.php?rid=3954328&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F09%2F09%2Fthe-winning-treatments-for-fibromyalgia-are-not-drugs%2F 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 th... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3954328 Thu, 09 Sep 2010 21:08:56 +0100 3954328 http://www.medworm.com/index.php?rid=3867004&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F08%2F14%2Fnew-feature-talk-to-your-closest%2F . Imagine being able to talk to someone who shares the same 7 conditions you have. What if they’re also your age? They could be going through the same thing every day that you do. You start to wonder, is their experience the same as yours? Do they have the same symptoms? What treatments are they trying? Do they also have the same side effects as you? In a new feature released at CureTogether this week, now you can not only find people that are your closest health matches, but you can send them a private message to ask them these questions. They can respond privately to you, and you can both choose what information to share with each other. To start talking, just log in to CureTogether, and click on the “Connect” link on the right menu of your home page. You’ll see a... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3867004 Sat, 14 Aug 2010 15:57:20 +0100 3867004 http://www.medworm.com/index.php?rid=3831432&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F08%2F06%2Fwelcome-curetogether-curators%2F . We’re excited to announce a new development at CureTogether. Our most active contributing members have been upgraded to official Curators! Amazing people like Ricky Buchanan in Melbourne, Australia (pictured above and found at http://notdoneliving.net/) are combing through CureTogether data. They are carefully checking for accuracy, duplicate entries, and generally helping to make sure that the information we have for our over 500 conditions is the highest quality it can be. This enables more discoveries that we can share with our condition communities and the larger public. Ricky and people like her are the reason CureTogether was started, and we are so grateful and glad to welcome the support of these inspiring heroes. Thank you!! (Source: The Collective Well) The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3831432 Sat, 07 Aug 2010 04:42:25 +0100 3831432 http://www.medworm.com/index.php?rid=3621681&cid=t_226148_87_f&fid=39187&url=http%3A%2F%2Fgetbetterhealth.com%2Fhealth-journalism-gems-you-shouldnt-miss%2F2010.06.02 A couple of health journalism gems you shouldn’t miss just because they were published over the holiday weekend: Natasha Singer of the New York Times had an important piece, “When Patients Meet Online, Are There Side Effects?,” about privacy concerns when social networking sites like CureTogether.com and PatientsLikeMe.com offer online communities for patients and collect members’ health data for research purposes. John Fauber of the Milwaukee Journal-Sentinel published another in his “Side Effects” series on conflicts of interest in healthcare. This one was about doctors vouching for the drug Multaq for treating atrial fibrillation without ever having seen all of the data. The Minneapolis Star Tribune began a “Too Much Medicine” series. Heal... Better Health blogs http://www.medworm.com/rss/comments.php?id=3621681 Wed, 02 Jun 2010 14:00:47 +0100 3621681 http://www.medworm.com/index.php?rid=3599554&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F05%2F25%2Fmarijuana-better-than-chiropractic-for-back-pain%2F For the interactive version of this infographic and some statistical geekery, click here. When your back hurts, is your first thought, “Where’s the marijuana?” I’m guessing not. But Back Pain is the #2 condition at CureTogether, with 1188 people reporting their experiences, and this is their collective wisdom. If you look at the infographic above, the most popular and effective treatments reported are on the top right – hot packs, physical therapy, stretching, exercise, massage. The top left quadrant shows below-average usage, but above-average effectiveness, so presumably if more people tried these, they would be helped (marijuana, Oxycodone, yoga, and Pilates). Those in the lower-right quadrant have above-average usage but below-average effectiveness, so pre... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3599554 Tue, 25 May 2010 17:17:10 +0100 3599554 http://www.medworm.com/index.php?rid=3585701&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F05%2F20%2F9-most-effective-anxiety-treatments%2F For the interactive version of this infographic, click here. 1,303 people have spoken. Anxiety is the biggest community at CureTogether, and here’s what these brave people have to say. The top right square of the infographic above shows the most popular, most effective treatments for anxiety. Exercise, therapy, breathing, meditation, yoga, avoiding caffeine, relaxation, massage – the non-invasive, simple alternative answers seem to work very well. Drugs such as Alprazolam and Lorazepam were also reported as effective, but not as many people had tried them. If you have anxiety, does this agree with your experience? Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for almost 2 years now. To thank everyone for their contri... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3585701 Thu, 20 May 2010 21:24:54 +0100 3585701 http://www.medworm.com/index.php?rid=3560333&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F05%2F12%2Fdoes-masturbation-work-for-insomnia%2F For the interactive version of this infographic, click here. What? It’s true, folks. Masturbation is both popular and effective for treating insomnia. So say 849 patients who self-reported their Insomnia symptoms and treatments at CureTogether. It doesn’t seem either scientific or appropriate to go into a personal story here, so I’ll spare you the details. But it is interesting to note that for insomnia, some of the pharmaceutical options seem to be quite effective. We saw the opposite with Migraine and Depression, where natural alternatives beat drugs. Where did this data come from? CureTogether members have been anonymously sharing symptoms and treatments for almost 2 years now. To thank everyone for their contributions, we’re releasing this result back to the commu... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3560333 Wed, 12 May 2010 20:33:56 +0100 3560333 http://www.medworm.com/index.php?rid=3538246&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F05%2F05%2Flifestyle-changes-seem-to-work-best-for-migraine%2F Wow, what a response. Our depression infographic got so many tweets, blog posts, and comments that we decided to release another one. This one is on Migraine, the condition with the most listed treatments at CureTogether. We took your excellent advice and developed an interactive version so you can click to see what all the other, unlabeled dots are. Suffering from occasional migraines myself, I was interested to learn that sleep, darkness, and avoiding triggers like wine and MSG were reported to have the most positive effect. In terms of medications, my Tylenol bottle just doesn’t seem to cut it compared to Imitrex. Of course, I tend to just bite the bullet and wait the migraine out – no need to bother asking my doctor for a prescription. Where did this data come from? CureTog... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3538246 Thu, 06 May 2010 03:49:56 +0100 3538246 http://www.medworm.com/index.php?rid=3522703&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F04%2F30%2Fstories-of-data-driven-lives%2F Does data drive your life? For some people, measuring and tracking themselves is a self-exploration process. Many stories can be found at The Quantified Self (where I am a blogger). One of the founders of Quantified Self, Gary Wolf of WIRED Magazine, just wrote this article in the New York Times Magazine called The Data-Driven Life. CureTogether is mentioned twice in the article – yay! Here is an excerpt: Trackers focused on their health want to ensure that their medical practitioners don’t miss the particulars of their condition; trackers who record their mental states are often trying to find their own way to personal fulfillment amid the seductions of marketing and the errors of common opinion; fitness trackers are trying to tune their training regimes to their own body types an... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3522703 Fri, 30 Apr 2010 20:17:26 +0100 3522703 http://www.medworm.com/index.php?rid=3508290&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F04%2F27%2Fautism-study%2F This press release went out this morning: CureTogether, an online social health community, announced today the launch of its Autism treatment study. CureTogether will provide an online venue for parents with Autistic children to anonymously share and rate the success of their treatments. “CureTogether is here to do good; we’ve adopted an open-source philosophy for health research,” said CureTogether co-founder Daniel Reda. “Patients and parents have so much knowledge and expertise to share with each other and with the world.” CureTogether is interested in collecting information about any and all treatments tried including: Anxiety and Depression medications, Chelation and IV therapies, Glutathione, Naltrexone, EDTA, DMPS, DMSA, Detoxification, vitamins B-12, ... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3508290 Tue, 27 Apr 2010 18:51:40 +0100 3508290 http://www.medworm.com/index.php?rid=3499183&cid=t_226148_118_f&fid=36984&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FHealthManagementRx%2F%7E3%2FFXd9pki_FVM%2Fproblem-every-behavior-change-platform.html Interesting - after using the brilliant #getupandmove for 4 months, running is so integrated into my life that I no longer need the app #qs via facebook.com To build something so useful at providing social support and helping motivate behavior change that - YOUR. USERS. OUTGROW. YOU. Wow, this is a first. The good news: #getupandmove is WORKING. The bad news: most of us fall off the wagon after a bit (cough cough Susannah, self). (Notice I do not believe the bad news is people stop wanting to #getupandmove, or stop wanting to use our platform). Unfortunately, the bad news is that behavior change maintained over time takes anywhere from 18-260+ days, depending on your personality, environmental variables, and a whole host of factors we don't currently know how to track and then optimize. R... Health Management Rx blogs http://www.medworm.com/rss/comments.php?id=3499183 Fri, 23 Apr 2010 02:15:00 +0100 3499183 http://www.medworm.com/index.php?rid=3499160&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F04%2F22%2F6-surprising-depression-treatments%2F This is how it happened. When my amazing CureTogether co-founder Daniel Reda flipped his screen around to show me this infographic, my excitement at how beautiful it looked was quickly replaced by my curiosity for what it showed. I knew exercise, sleep, and therapy were popular and effective treatments for depression. But a few things surprised me. Fish oil, also popular, showed up as much less effective than I expected. And light therapy, which not many people have tried, was quite effective. Take a look at it for yourself and see if anything surprises you. Where did this data come from? CureTogether members have been sharing symptoms and treatments for almost 2 years now. For this infographic, information was anonymously analyzed from 944 people in our Depression community. To thank ever... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3499160 Thu, 22 Apr 2010 17:39:52 +0100 3499160 http://www.medworm.com/index.php?rid=3471888&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F04%2F15%2Fannouncing-the-curetogether-guide-to-depression%2F You are a part of this, too. Just like for Anxiety, this crowdsourced guide to depression is based on input from 1000 CureTogether members with Depression. Inside the book are insights about how to find out if you’re depressed, getting diagnosed, how to find a treatment that is most likely to work for you, running self-experiments, understanding cognitive bias in decision-making, and the latest discoveries from both patients and scientists around the world. The CureTogether Guide will help you navigate your way through Depression. Download your copy here. We hope it helps! (Source: The Collective Well) The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3471888 Thu, 15 Apr 2010 13:47:40 +0100 3471888 http://www.medworm.com/index.php?rid=3403981&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F03%2F24%2Fjust-released-the-curetogether-guide-to-anxiety%2F . 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 Anxiety. Download your copy here, or read on for the juicy 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 yo... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3403981 Wed, 24 Mar 2010 23:57:33 +0100 3403981 http://www.medworm.com/index.php?rid=3212415&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F01%2F26%2Ftop-3-trends-in-participatory-medicine%2F Participatory Medicine: new health insights from patient generated data View more documents from Alexandra Carmichael. CureTogether co-founder Daniel Reda gave a talk this morning via tele-presence at the Social Media in Healthcare conference in Zurich, Switzerland. He talks about the 3 biggest trends in participatory medicine, why this is happening now, and where it’s going in the future. Happy slide-watching! (Source: The Collective Well) The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3212415 Tue, 26 Jan 2010 18:19:44 +0100 3212415 http://www.medworm.com/index.php?rid=3163870&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F01%2F11%2F13-new-discoveries-at-curetogether-2%2F Thousands of voices can create beautiful discoveries. (Photo: qthomasbower) . A huge thanks to the amazing CureTogether community! Sharing your health conditions, symptoms and treatments is leading to many new associations. Many of you have been asking for more personalized recommendations, like what treatment will work best for me given my set of symptoms? I’m excited to say this is in the works! Our query masters are knee-deep in stats right now to find answers for you. In the meantime, a gift – here are 13 more co-morbidities we found, with a significant 99% confidence interval. We hope this advances research into these conditions and sparks new questions and ideas. . Endometriosis – Infertility (757 people) . Eating Disorders – Obsessive-Compulsive Disorder (724... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3163870 Mon, 11 Jan 2010 18:42:08 +0100 3163870 http://www.medworm.com/index.php?rid=3142667&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2010%2F01%2F04%2Ffibromyalgia-and-neuropathy-are-friends%2F Awesome awareness art by Kindreds Page . Chronic pain – not fun, extremely common, and very poorly understood. I recently learned that 10 million Americans are estimated to have fibromyalgia, a chronic pain condition, and up to 20 million Americans have neuropathy, a nerve disease that causes pain and numbness. (Statistics from the National Fibromyalgia Association and the Neuropathy Action Foundation). With enough patients coming together, progress can start to be made on these conditions that affect so many people in their everyday lives. Today’s announcement is that we found a strong association between Fibromyalgia and Neuropathy, which independent studies published in established journals also confirm. In graphical form: x .d CureTogether members who report Fibromyalgia a... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3142667 Tue, 05 Jan 2010 00:14:58 +0100 3142667 http://www.medworm.com/index.php?rid=3129558&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F12%2F29%2F5-free-self-tracking-tools-to-help-you-get-in-shape%2F It’s easier than ever to get in amazing shape. (Photo: mikebaird)                     . OK, so we all indulge a bit extra over the holidays. Cozy family gatherings, festive parties, and the mass consumption frenzy that surrounds us, even if we’re trying to keep things simple. Fortunately, the new year always gives us a chance to start fresh. And this year it will be so much easier to stick to your resolutions, thanks to the explosion of self-tracking tools 2009 has seen. Here are my top 5 to help you get going: . 1. #getupandmove This is the best new app I’ve tried in a while. Hot off the press from the brilliant @jensmccabe and @shazow, #getupandmove is a lightweight Twitter app where you challenge your online friends to exercise with you. For me, having vir... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3129558 Tue, 29 Dec 2009 19:46:49 +0100 3129558 http://www.medworm.com/index.php?rid=3111496&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F12%2F20%2Fdont-get-depleted-over-the-holidays-or-candidiasis-and-adrenal-fatigue-run-together%2F Running yourself ragged is easy this time of year. (Photo: smellyknee)                     . Does this look like you? Around the holidays we often stop listening to our bodies. Family cheer comes along with a good dose of stress, overeating, and not much exercise. For some people, this depletion of our bodies can increase susceptibility to yeast infection (candidiasis), or adrenal fatigue, or both. Today’s announcement is that we found a strong association between Candidiasis and Adrenal Fatigue. This is a new association that has not been extensively studied by traditional research. In graphical form: . CureTogether members who report Candidiasis are 4x more likely to report Adrenal Fatigue than members with no Candidiasis. This comes from a study of 750 people sharin... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3111496 Sun, 20 Dec 2009 19:44:15 +0100 3111496 http://www.medworm.com/index.php?rid=3100892&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F12%2F17%2Fdepression-sufferers-3x-more-likely-to-have-anxiety%2F . What if depression and anxiety could be seen as a color on your skin? (Photo: Photomish Dan)                     . This is our biggest study yet. Almost 1,000 people came together to report on their experience with depression and/or anxiety. Having post-partum depression myself after both of my girls were born, I got a taste of how devastating this condition can be. But add anxiety on top of it, and it’s a double hit to mood, functioning, and quality of life. Today’s announcement is that we found a strong association between Depression and Anxiety, which independent studies published in established journals also confirm. In graphical form: . . CureTogether members who report Depression are 3x more likely to report Anxiety than members with no Depression. This co... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3100892 Thu, 17 Dec 2009 23:19:35 +0100 3100892 http://www.medworm.com/index.php?rid=3092783&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F12%2F15%2Feating-disorders-linked-to-distorted-body-image%2F Do you see yourself as you really are? (Credit: Luis Muñoz) Imagine looking in a mirror and hating what you see. You eat alone, you may alternately starve and binge, you feel horrible about yourself. You’re probably tired and depressed too, to top it all off. According to the National Eating Disorders Association, tens of millions of people in America alone are dealing with this every day. I have two daughters, and I often wonder why nutrition and positive body image are not part of basic education. But taking my Mom hat off and putting my Scientist hat back on, it turns out eating disorders and having an inaccurate or distorted body image are linked. Maybe this is not too surprising. It’s still important to talk about though. We found a strong association between Eating Disor... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3092783 Tue, 15 Dec 2009 18:39:25 +0100 3092783 http://www.medworm.com/index.php?rid=3089393&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F12%2F14%2Fbipolar-and-ocd-run-together%2F A playful placement of pills. (Credit: me and the sysop)               . “I’m using this with my cognitive therapist and it’s… amazing.” I got this email from Christopher, a CureTogether member with Bipolar Disorder: “I have never found a more useful “biofeedback” tool.  It has helped me enormously in understanding my Bipolar I condition… You’ve seriously changed my life.” Words like Christopher’s inspire us to keep doing the work we’re doing, and putting out discoveries like today’s. So here goes. We found a strong association between Bipolar Disorder and Obsessive-Compulsive Disorder (OCD), which independent studies published in established journals also confirm. In graphical form: . . People ... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3089393 Mon, 14 Dec 2009 18:38:44 +0100 3089393 http://www.medworm.com/index.php?rid=3082465&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F12%2F11%2Fhigh-cholesterol-folks-6x-more-likely-to-be-insulin-resistant%2F OK, this is a seriously scary load of fat and sugar. (Photo: VirtualErn)               . It was sundae night at my house. My parents would set out bowls, ice cream, and an obscene number of toppings, from whipped cream and chocolate sauce to marshmallows and sprinkles. We all chowed down, then lolled about in a vague stupor. It didn’t happen that often, but it’s not something I ever want to repeat. My parents are both on medication for high cholesterol, and I just found out from my 23andMe genetic scan that I have an elevated risk of getting diabetes. So I exercise and watch what I eat every day. But I was surprised by today’s CureTogether research finding. I didn’t expect to learn that high cholesterol and insulin resistance (the first step on the way diab... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3082465 Fri, 11 Dec 2009 20:13:28 +0100 3082465 http://www.medworm.com/index.php?rid=3075616&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F12%2F09%2Fcuretogether-in-h-magazine%2F h+ Magazine asked me to write an article about self-tracking, so I did! It’s in the Winter Issue of h+, available for download now. It talks about Gordon Bell’s self-tracking work at Microsoft, the Quantified Self, my own tracking, and CureTogether. I think the Quantified Life is worth living, do you? (Source: The Collective Well) The Collective Well blogs http://www.medworm.com/rss/comments.php?id=3075616 Wed, 09 Dec 2009 19:10:30 +0100 3075616 http://www.medworm.com/index.php?rid=2851891&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F10%2F01%2Fwinning-mayo-clinic-talk-on-the-future-of-health%2F I was recently at the Mayo Clinic Transforming Healthcare Symposium to give a talk on how Self-Tracking will change the future of health. Here is an overview of the talk, and the slides and video are below. “The New Wave of Self-Tracking Ubiquitous, invisible biosensors. Constant, streaming measurements. Analytics for your health. Detailed self-tracking will transform our understanding of our bodies, our health, and our medicine. Geeks are already tracking everything from calories to blood pressure to steps taken during the day (Quantified Self). People with chronic conditions track their treatments, pain levels, and side effects (CureTogether). The ultimate promise when this goes mainstream is true personalized medicine, where each person gets a treatment plan individual to their b... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2851891 Thu, 01 Oct 2009 17:24:03 +0100 2851891 http://www.medworm.com/index.php?rid=2800519&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F09%2F15%2Fcrowdsourced-health-confirms-infertility-asthma-finding%2F CureTogether Data Reveals Link Between Self-Reported Infertility and Asthma ——————————————————————————————————————– Announced at Mayo Clinic Transforming Healthcare Conference on September 15: Patients at CureTogether who report infertility are 1.9x more likely to report having asthma than patients who don’t report infertility. This comes from an analysis of 324 patients. Within the 34 people reporting infertility, 13 (38%) reported having asthma (the remaining 21 out of 34 specifically said they did NOT have asthma). Within the 290 people reporting &#82... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2800519 Tue, 15 Sep 2009 23:26:28 +0100 2800519 http://www.medworm.com/index.php?rid=2657732&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F07%2F30%2Ffirst-birthday-contest-whats-your-cure%2F CureTogether is 1 year old this month! To celebrate and thank our amazing members and supporters, we’re giving away free T-shirts. Create a video (under 1 minute) on how you cured yourself, how CureTogether has helped you, or any cure-related theme. The best 20 videos get this beautiful T-shirt! To enter, upload your entry to YouTube or any video-sharing site by August 13 and send the link to Alexandra at alexandra@curetogether.com. Good luck! News Update CureTogether was also mentioned in these articles recently - many thanks to the authors and readers who keep encouraging this work! Wired: “Know Thyself: Tracking Every Facet of Life, from Sleep to Mood to Pain, 24/7/365“ Wall Street Journal: “Health Data Proves Contagious on Social Media” Brainandspinalcord... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2657732 Fri, 31 Jul 2009 00:24:53 +0100 2657732 http://www.medworm.com/index.php?rid=2473612&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F06%2F11%2Fsneak-peek-healthcare-in-2020%2F This week I got to attend the Institute for the Future (IFTF)’s Health Horizons Conference in San Jose. Kathi Vian invited me to join her wonderful panel on Building the Health Commons, along with Tori Tuncan of Lend4Health and Dr. Kelly Travers of MD Health Evolution. My slides on “Patient-generated data” are below, although I’m not sure they stand alone without me talking through them. The trends and forecasts presented by IFTF for what healthcare will look like in 2020 were striking, inspiring, and cautionary. 100 people from all manner of health-focused organizations were there, sharing ideas and brainstorming “if only…” scenarios in Open Space sessions. 2020 Forecasts Since the meeting was for IFTF clients, I’m not allowed to get into to... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2473612 Thu, 11 Jun 2009 21:38:26 +0100 2473612 http://www.medworm.com/index.php?rid=2464210&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F06%2F08%2Finspiration-and-free-stuff-for-national-headache-awareness-week%2F For all of you out there with headaches, this week is National Headache Awareness Week. Here are some inspiring campaigns going on (and free stuff!) to celebrate everyone living with tension headaches, chronic headaches, migraines, and cluster headaches. Wishing you a pain-free week! American Academy of Neurology Foundation The AANF has two websites to share for its “Buy a Brain” and BrainMatters campaigns: https://www.TheBrainMatters.org/buyabrain Buy a virtual brain online for as little as $5 through the American of Neurology Foundation in honor of a friend or family member. Your virtual brain will then float on the AAN Foundation’s wall of donations. Your donation will make a difference in the lives of people affected by a neurologic disorder because 100% of your gift... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2464210 Mon, 08 Jun 2009 22:35:32 +0100 2464210 http://www.medworm.com/index.php?rid=2452768&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F06%2F03%2Ffirst-crowdsourced-book-on-migraine-released%2F We are excited to announce today the release of “Migraine Heroes: 271 People Share Their Experiences and Treatments.” . What’s Inside? 271 people share stories, symptoms, and resources Surprising data on co-morbid conditions Detailed comments on treatments by real patients . Please spread the word! Blog or tweet http://www.curetogether.org/MHeroes/ All proceeds from Migraine Heroes go to fund the migraine data community at CureTogether.org. . What People Are Saying “The best Observations of Daily Life (subjective, ‘real-world’) I’ve seen!” — Jen McCabe (@jensmccabe on Twitter) “Interesting crowdsourced clinical data.” — Chris Hogg (@cwhogg on Twitter) “The book is excellent! So many people suffer from this debilitating condition. The information i... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2452768 Wed, 03 Jun 2009 19:34:24 +0100 2452768 http://www.medworm.com/index.php?rid=2447747&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F06%2F01%2Fdaniels-podcast-for-pharma-marketing-blog%2F Last week Daniel did a live podcast interview with John Mack for the Pharma Marketing Blog. He talks about how CureTogether got started and what patients are discovering on the site. Here’s the streaming audio below (about 15 minutes long). . (Source: The Collective Well) The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2447747 Mon, 01 Jun 2009 18:04:07 +0100 2447747 http://www.medworm.com/index.php?rid=2441853&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F05%2F28%2Fcuretogether-founders-caught-on-video%2F At long last, we’re releasing recent videos of both of us speaking at the Quantified Self meetups. Daniel gives a quick, early overview of CureTogether from December 2008, and Alexandra talks about who to trust for health information in March 2009. Enjoy! . . Alexandra Carmichael on trust and health information sources from Kevin Kelly on Vimeo. (Source: The Collective Well) The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2441853 Thu, 28 May 2009 19:32:33 +0100 2441853 http://www.medworm.com/index.php?rid=2442757&cid=t_226148_150_f&fid=34889&url=http%3A%2F%2Fpharmamkting.blogspot.com%2F2009%2F05%2Flive-podcast-today-at-1-pm-curetogether.html CureTogether: A Social Network for Patients to Share Symptoms and Solutions to Improve Thier Health Daniel Reda, Co-founder of CureTogether.com, will talk about this new social network that helps people anonymously track and compare health data, to better understand their bodies, make more informed treatment decisions and contribute data to research.Guest: Daniel Reda, Co-founder of CureTogether.com Live Streaming Audio Date: Thursday, May 28, 2009, 1 PM Eastern US time. Live Streaming Audio Duration: 15 minutes Go to this Pharma Marketing Talk Segment Page at the time indicated above to listen to the LIVE show via streaming audio on the Web. You will also be able to participate in an online chat with the host and speakers to ask questions! An audio podcast archive is available after the ... Pharma Marketing Blog blogs http://www.medworm.com/rss/comments.php?id=2442757 Thu, 28 May 2009 14:25:00 +0100 2442757 http://www.medworm.com/index.php?rid=2441854&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F05%2F26%2Fmigraine-study-69-of-patients-have-co-morbid-conditions%2F In the live, ongoing Migraine study at CureTogether, 271 people have so far been surveyed for having other, co-morbid conditions. 186 (69%) of the respondents reported having at least one other condition. A chart of conditions co-morbid with migraine is shown below (click on the chart for a larger view). We define a condition to be co-morbid with migraine if more than 5 people reported having both migraine and the condition. . .Click on the graph above to see a larger version. . Here is a list of the conditions found to be co-morbid with migraine in this survey, in order of prevalence. Anxiety (102 people) Depression (98) Back pain (85) Allergies (75) Insomnia (69) Common Cold (69) Irritable Bowel Syndrome (68) Acne (61) Vulvodynia (59) Acid Reflux (55) Bladder Infection (49) Endometriosi... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2441854 Tue, 26 May 2009 18:04:09 +0100 2441854 http://www.medworm.com/index.php?rid=2414910&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F05%2F15%2Ftim-ferriss-and-kevin-rose-on-open-source-clinical-trials%2F The second video in a series of two famous buddies discussing random things, in the clip below Tim and Kevin talk about music, open source clinical trials, CureTogether (about half way through), and their favorite knives. The open source health discussion is impressive, the rest is good fun. And check out Tim’s shoes! . Random Episode Numero 2 from Glenn McElhose on Vimeo. (Source: The Collective Well) The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2414910 Fri, 15 May 2009 21:10:18 +0100 2414910 http://www.medworm.com/index.php?rid=2389992&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F05%2F05%2Fhow-to-use-twitter-to-spread-your-message%2F Getting your message out is the biggest challenge in the crowded online space. Using Twitter has helped us at CureTogether (http://twitter.com/accarmichael), and it can help you too. Here’s how. 1. Follow conversations about your cause At http://search.twitter.com, you can search for any keyword and see what everyone on Twitter is saying about it, live. It’s a great way to find people to follow that are interested in the same things you are. 2. Be a real-time presence When you see a conversation about your cause, you can jump right in and be part of it. A live response is a great way to diffuse any negative comments about your organization, give thanks for positive ones, and put a real face and personality to your cause. 3. Build community and momentum Twitter is a great pla... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2389992 Tue, 05 May 2009 19:59:54 +0100 2389992 http://www.medworm.com/index.php?rid=2376296&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F04%2F28%2Fstop-the-pain-a-post-for-migraine-sufferers%2F I wrote a post today about how self-tracking can help migraines at the Quantified Self blog. It talks about research showing headache diaries to be effective in predicting and diagnosing migraine, shares a story of a migraineur who tracks herself, and calls for participants to join the CureTogether migraine study. Please read and share with any loved ones who suffer with migraine pain! Another recent mention of migraine was by Josh Bernoff of Forrester Research at the recent HealthCamp Boston. One of his slides, shown below, suggests that migraine sufferers and people with chronic pain conditions are most likely to benefit from and to participate in online social networks (top right quadrant). On the one hand, it’s great to see so much increasing attention on migraine and chronic pai... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2376296 Tue, 28 Apr 2009 20:35:37 +0100 2376296 http://www.medworm.com/index.php?rid=2365178&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F03%2F30%2Fusers-vs-experts-who-to-trust-for-health-information%2F If I had boots, I’d be shaking in them. In a month I’m headed to Boston to be part of the Health 2.0 conference. I’m presenting CureTogether as part of the “Wiki vs. Expert” panel debate. I haven’t done much speaking in the last 6 years, with small children to care for. But it’s time to jump back in now. I feel like there are millions of people in pain depending on me, wanting me to be out there trying to do whatever I can to help them. If I were in pain, I’d want someone out there trying to help me. . It’s an interesting question though. Do you trust fellow patients for health information? Or experienced doctors? Or some combination of the two? Here’s the description of the panel debate from the Health 2.0 agenda: “User-gen... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2365178 Mon, 30 Mar 2009 21:30:25 +0100 2365178 http://www.medworm.com/index.php?rid=2365179&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F03%2F23%2Fthe-21-things-people-track-at-curetogether%2F After the recent release of the “track anything you want” feature at CureTogether, a flurry of self-tracking happened. People started measuring themselves every day. They added new measures to track, some of which were wonderfully surprising. Tracking happens right on the CureTogether home page after you log in, or using our iGoogle widget. Here’s the list of what people are tracking today: Sample CureTogether self-tracking graph . Adderall time (1 and 2, times drug taken) BMI (%) Blood pressure (Sys and Dia, mmHg) Calories burned (cal) Caloric intake (cal) Count my blessings Exercise (minutes) Hydration (%) Laughter (units) Meal time (1-4, time) Mood (units) Nap (min) Peak flow (units) Productivity (pages) Pulse (BPM) Sleep (hours) Sleep time (time) Temperature (degrees... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2365179 Tue, 24 Mar 2009 01:12:53 +0100 2365179 http://www.medworm.com/index.php?rid=2365180&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F03%2F12%2Ffirst-crowdsourced-book-on-endometriosis-released%2F We are excited to announce today the release of “Endometriosis Heroes: 137 Women Share Their Experiences and Treatments.” . What’s Inside? 137 women share stories, symptoms, and resources Surprising data on co-morbid conditions Detailed comments on treatments by real patients . Please spread the word! Blog or tweet http://www.curetogether.org/EHeroes All proceeds from Endometriosis Heroes go to fund the endometriosis data community at CureTogether.org. A FREE PDF version is available if you invite 19 friends to CureTogether. . What People Are Saying “Congrats - hands together for you and the amazing disruptive women at CureTogether!” — Jen McCabe Gorman (@jenmccabegorman on Twitter) “Health 2.0 in action. CureTogether uses real patient stories to b... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2365180 Thu, 12 Mar 2009 16:22:02 +0100 2365180 http://www.medworm.com/index.php?rid=2365181&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F03%2F08%2Fendometriosis-survey-shows-high-comorbidity-rates%2F In the Endometriosis community at CureTogether, 137 women were surveyed for having other, co-morbid conditions. 76 (55%) of the respondents reported having at least one other condition. A chart of conditions co-morbid with endometriosis is shown below (click on the chart for a larger view). We define a condition to be co-morbid with endometriosis if more than 5 women reported having both endometriosis and the condition. . . Here is a list of the conditions found to be co-morbid with endometriosis in this survey, in order of prevalence. Irritable Bowel Syndrome (95 women) Migraine (86) Infertility (84) Interstitial Cystitis (79) Fibromyalgia (78) Eating Disorders (76) Acid Reflux (76) Aging (75) Candidiasis (75) Pelvic Congestion Syndrome (74) Anxiety (73) Back pain (73) Depression (73) B... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2365181 Sun, 08 Mar 2009 12:32:08 +0100 2365181 http://www.medworm.com/index.php?rid=2365182&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F03%2F04%2Ftop-10-conditions-at-curetogether-chronic-womens-health%2F What do the 10 most active conditions at CureTogether have in common? As you can see from the chart below, most of them are chronic conditions, and many affect more women than men.* To learn more about what these conditions are, read on below the chart. Vulvodynia saw a big surge in data around the release of the crowdsourced book, Vulvodynia Heroes, compiled by CureTogether with input from 190 women. This chart also only captures a representative portion of the data recorded by people with these conditions. So what are these conditions? While they are all common, some of them are not commonly known, so you may not have heard of them. Here’s a quick run-down: — Vulvodynia Affects: 16% of women at some point in their lives. That’s 48 million women in the US alone. What it... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2365182 Wed, 04 Mar 2009 15:27:11 +0100 2365182 http://www.medworm.com/index.php?rid=2365183&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F03%2F02%2Fpresentation-health-20-as-a-research-vehicle%2F Matthew Holt, of The Health Care Blog, recently presented to the National Committee on Vital and Health Statistics. He featured CureTogether as part of the Health 2.0 movement and as a new source of health data for research. Slides from his presentation are below. Health 2.0 as a new data source View more presentations from Matthew Holt. (tags: 2.0 health) (Source: The Collective Well) The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2365183 Mon, 02 Mar 2009 21:54:46 +0100 2365183 http://www.medworm.com/index.php?rid=2365184&cid=t_226148_113_f&fid=38494&url=http%3A%2F%2Fcuretogether.com%2Fblog%2F2009%2F02%2F25%2Ffirst-crowdsourced-womens-health-book-released%2F We are excited to announce today the release of “Vulvodynia Heroes: 190 Women Share Their Experiences and Treatments.” . What’s Inside? 190 women share stories, symptoms, and triggers Surprising data on co-morbid conditions Detailed comments on treatments by real patients . Please spread the word! Blog or tweet http://www.curetogether.org/VHeroes All proceeds from Vulvodynia Heroes go to fund the vulvodynia data community at CureTogether.org. A FREE PDF version is available if you invite 19 friends to CureTogether. . What People Are Saying “The vulvodynia heroes are pioneers not just in investigating their own condition, but in developing self-cure practices that others can follow.” — Gary Wolf, Contributing Editor of Wired, Blogger at The Quantified... The Collective Well blogs http://www.medworm.com/rss/comments.php?id=2365184 Wed, 25 Feb 2009 14:49:58 +0100 2365184 http://www.medworm.com/index.php?rid=2188064&cid=t_226148_131_f&fid=35008&url=http%3A%2F%2Fscienceroll.com%2F2009%2F02%2F13%2Ffirst-crowdsourced-health-condition-book-by-curetogether%2F I presented CureTogether here a few months ago. It plans to bring together patients and scientists to create an open-source health research system. Now they are publishing the first crowdsourced health condition book created by the most active community. It means the book contains a lot of information on vulvodynia, a disorder of vulvar pain, burning, and discomfort: 190 women share stories, symptoms, and triggers Surprising data on co-morbid conditions Detailed comments on treatments by real patients And! All proceeds from Vulvodynia Heroes go to fund the vulvodynia data community at CureTogether.org. Before, I said CureTogether looked promising. Now I think it does work. (Source: ScienceRoll) ScienceRoll blogs http://www.medworm.com/rss/comments.php?id=2188064 Fri, 13 Feb 2009 21:39:52 +0100 2188064