Patient Experiences

Does It Work? Lithium and ALS

by James Heywood Update (March 7, 2008):  PatientsLikeMe ALS Lithium Research released. Does it work? On February 12th of this year, Proceedings of the National Academy of Sciences (one of the leading science journals) published a paper entitled — Lithium Delays Progression of Amyotrophic Lateral Sclerosis. After 10 years researching ALS, I believe it is fair to say this paper includes the most promising suggestive set of data from a clinical trial ever published. I say “suggestive” because there are many flaws with both the information presented and with the publication process itself. These flaws make it so that patients and their doctors are left trying to draw conclusions about the use of Lithium to treat ALS, without actually having any realistic confidence in the data or its meaning. For a patient, there is genuine risk either way. Lithium is not a harmless drug, and, although it is widely used, it can have significant side effects if it is not monitored properly. In addition, the reality is that in several of the last clinical trials in ALS, including minocycline and topiramate, the patients in the treatment group did worse than those in the control group. So, fears about the risk …

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Business Development in Health 2.0: Blazing the Trail to Profitability

Much has been made about the potential for viable businesses in the health 2.0 movement. In short, these articles and blogs (among others) openly and appropriately question the long-term viability of the space: Seattle Post-Intelligencer Wikinomics Blog Chilmark Research Blog IHealthBeat San Francisco Chronicle Are they right? That answer is unclear, but they are right to ask. In our spirit of openness at PatientsLikeMe, we’re going to share some of our experiences as we evolve our commercialization strategy. In order to give context to the discussion, however, we want to share our corporate values. These values shape our lenses so when we have partnership opportunities, we see 20/20, and avoid color blindness, i.e. only seeing green. Honor the trust patients place in us Simply stated, this means “Patients First”. Patients trust us with their most valued health information and share it with people they believe have the same collective goals. We can’t overestimate the trust we’re given. Openness Per our Openness Philosophy, we believe that sharing health information is good. Why? Because sharing will drive massive change in healthcare. Transparency No surprises. Our members shouldn’t be surprised by any of our steps, especially in business development. We will disclose all …

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PatientsLikeMe Recognized by Health 2.0 Founders

PatientsLikeMe is proud to be at the forefront of the Health 2.0 movement. What’s Health 2.0 you ask? It’s all about revolutionizing healthcare through new, web-based tools, search functionality and communities. As a result, patients are able to communicate and exchange information in ways they never could before. No wonder Matthew Holt and Indu Subaiya, organizers of the annual Health 2.0 Conference, list PatientsLikeMe as one of the five most exciting Health 2.0 companies. In a recent interview for the eDrugSearch.com Blog, Matthew said, “[PatientsLikeMe is] the best example of a combination of a really useful community and tools making a significant difference in the lives of people with serious debilitating diseases. You can literally drill down and see people in exactly your situation, on your drugs, and see what did or did not work for them.” We’re delighted by this recognition, which only bolsters our determination to open the healthcare system further. We know the powerful benefits of sharing treatment and outcome experiences – and pretty soon, the healthcare industry will too!

The growth of social media in health care

According to a December 2007 iCrossing survey cited by Jane Sarasohn-Kahn in her Health Populi blog “34% of Americans turn to social media for health research.” Jane points to PatientsLikeMe and others as “proof of the reality of social media in health is alive and well and healing”, and observes that “increasing numbers of people are reaching out to others for more than the kind of support they might have found in the Compuserve health interest groups in the 1980s; they’re finding practical solutions to chronic health challenges” Interesting reading, especially her response to one commenter that “In the case of info for PatientsLikeMe, the database on drug dosing, quality of life and outcomes throughout the MS cycle is probably richer than any other single source on the globe”.

To spit or not to spit (openness gets personal)

Over the past seven months of working at PatientsLikeMe, I’ve come to think that the idea of sharing medical and health information is completely normal. Since giving birth to my nearly 3 year old daughter, I have continued to be eternally grateful to other mothers who have willingly and openly shared their deeply personal experiences and advice so readily. There are some unexpected things you have to deal with, and nothing is so helpful as the wisdom of others who’ve been there. Then this December, I had a moment of pause. All of us at the company received a year-end gift of 23andMe‘s Personal Genome Service. Here was my chance to find out what my genes have in store for me and to find out what I might have passed onto my little girl. But do I really want to know? And once I find out, do I want share that information? Well, it took a while to decide and I hadn’t expected that. I realized that deciding to put very personal details about my health, current or future, out into the world is no small thing. I commend each and every person who has chosen to share their information …

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Benjamin Heywood Interviewed by the Health Business Blog

Bringing the New Year in right, Benjamin Heywood, CEO of PatientsLikeMe, was interviewed by David E. Williams, publisher of the Health Business Blog (not to be confused with David S. Williams who works with PatientsLikeMe). In the interview, Ben discusses the future of the company, its ground-breaking Openness Philosophy, and the differentiation of PatientsLikeMe versus other Health 2.0 companies. Here’s how David E. Williams characterized PatientsLikeMe: PatientsLikeMe is one of my favorite Health 2.0, social networking websites. The online community enables patients with serious illnesses to build content-rich connections to similar patients. Patients are motivated to provide all the relevant information about themselves and to stick with the site over time to help one another. As a consequence, PatientsLikeMe users collectively generate robust data sets that have the potential to generate meaningful insights for researchers and commercial entities. That leads to some interesting business opportunities for the company. The interview provides great insight about PatientsLikeMe. Enjoy!

Happy Holidays! PatientsLikeMe Update: December 2007

As 2007 comes to a close, we want to wish everyone a safe and happy holiday season. Thanks for being a part of the PatientsLikeMe family! In order to continue to create online homes for patients with life-changing conditions, we need to continue building a solid team. Therefore, we plan to expand our staff in the new year, which is why we’ve recently added a “Careers” page on our site. There is currently one active posting for a Senior Application Developer with even more in the works. If you know someone who might be a fit, please let them know about the career opportunities offered at PatientsLikeMe. We essentially look for talented individuals with an interest in helping patients. So we figured, who better to ask for referrals than you! Again, we wish you all the best of holidays with 2008 being the best year to come.

The Value of Openness

Welcome to the PatientsLikeMe blog. Here you will get firsthand accounts of our growth and how we are impacting global health care. Why have we chose the name “The Value of Openness”? Read our Openness Philosophy below, and you’ll see why. ________________________ Openness is a good thing. Most healthcare websites have a Privacy Policy. Naturally, we do too. But at PatientsLikeMe, we’re more excited about our Openness Philosophy. It may sound counterintuitive, but it’s what drives our groundbreaking concept. You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system. Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the …

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PatientsLikeMe at Health 2.0 Conference

PatientsLikeMe attended the inaugural Health 2.0 conference in San Francisco. Congratulations to Matthew Holt and Indu Subaiya for putting on a great show. Ben Heywood participated in the Social Media panel along with other great health 2.0 companies, DailyStrength, OrganizedWisdom, Inspire, MedHelp, and Sophia’s Garden. The high quality of each company’s offering ensures that patients will continue to have many destinations to share their health situations, get support, and even answers. At the end of the social media panel, the 500 conference guests were asked which company they’d choose if they were an e-patient. PatientsLikeMe received 39% of the votes. While we appreciate this high praise from our peers, our mission is to positively effect patient outcomes through our site and to improve healthcare overall. We’re honored to be a part of this movement with other leading companies in the space.

Business 2.0 and CNN Money Recognize PatientsLikeMe as one of its “Next Disruptors: 15 Companies That Will Change The World”

PatientsLikeMe, the leading treatment and outcome sharing website for people with life-changing conditions, has been recognized by Business 2.0 and CNN Money.com as one of their 2007 “Next Disruptors: 15 Companies That Will Change The World“. “We are honored to receive this recognition. However, we know we still have much to do in order to achieve our mission of helping patients learn from shared real-world outcomes so we can all contribute to finding the best treatment options,” explains co-founder and CEO, Benjamin Heywood. PatientsLikeMe has taken an extraordinary position regarding patient data believing that openness and sharing, rather than strict privacy, is the best way for people to take control of their health care, improve outcomes, and accelerate research. The company has its Openness Philosophy posted on its website for anyone to view. PatientsLikeMe also shares aggregated data from its members in order to share data with the world, recently announcing their data repository in ALS, Multiple Sclerosis and Parkinson’s.

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