Search Results for: openness

PatientsLikeMe Announces New Partnerships

At PatientsLikeMe, our Core Values drive all of our business processes including selection of partners. We are proud to announce our three newest partnerships which include both nonprofit and academic institutions. Note: At all times, our members can access information about what we do with their data, how we make money, and who is partnering with us. Accelerated Cure Project for Multiple Sclerosis – a national nonprofit organization dedicated to curing MS by determining its causes. Myelin Repair Foundation – the only non-profit medical research foundation solely focused on identifying myelin repair drug targets that will lead to treatments for multiple sclerosis. Penn State Milton S. Hershey Medical Center – one of the leading research institutions in the field, particularly around issues of quality of life (QOL) for patients suffering from ALS. What do these partnerships mean? Together, we can open the healthcare dialogue by sharing and learning from one another. As we say in our Openness Philosophy, “we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.

Genetic Discrimination: The End Before the Beginning

Updated:  The Genetic Information Nondiscrimination Act (GINA) was signed into law by President Bush on May 21, 2008. In a victory for openness and personalized medicine, on May 1, Congress sent President Bush a bill forbidding employers and health insurers from discriminating on the basis of genetic information. The Genetic Information Nondiscrimination Act was passed in the Senate 95-0, and in the House of Representatives 414-1, and President Bush is expected to sign it into law. Now, Americans can take advantage of genetic testing without fear of being dropped from their health insurance or fired from their job for having a pre-existing condition. In essence, a person’s genes are protected in the same manner as their age, gender, race, and religion (and if you think about it, genes are merely an extension of some of those things!). Before this bill became a reality, many individuals were paying in cash for genetic tests or even denying themselves information that could have prepared them for, prevented, or aided in treatment of a disease. For more information, see the AP article.

PatientsLikeMe Featured in New York Times Magazine

In one of the greatest honors in our young company to date, PatientsLikeMe was featured in today’s New York Times Magazine. The article, entitled Practicing Patients, appropriately discusses the pros and cons associated with sharing data-rich personal health information in an open community. PatientsLikeMe seeks to go a mile deeper than health-information sites like WebMD or online support groups like Daily Strength. The members of PatientsLikeMe don’t just share their experiences anecdotally; they quantify them, breaking down their symptoms and treatments into hard data. They note what hurts, where and for how long. They list their drugs and dosages and score how well they alleviate their symptoms. All this gets compiled over time, aggregated and crunched into tidy bar graphs and progress curves by the software behind the site. And it’s all open for comparison and analysis. By telling so much, the members of PatientsLikeMe are creating a rich database of disease treatment and patient experience. With amazing patient successes balanced by medical leaders’ skepticism, author Thomas Goetz strikes a critical chord within the current healthcare debate. Is the American health system broken? Can patients fix it through aggregation of collective experience? Are patients to be trusted to report their …

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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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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!

PatientsLikeMe Update: November 2007

It’s been six months since we launched our first newsletter, and a lot has happened at PatientsLikeMe in that time. With the holiday season now upon us, we thought we should give thanks for the amazing strides made in all our communities. There is power in numbers, as they say, and we are grateful to every new member for increasing our ability to effect change. ALS Community We are proud to announce that our flagship ALS community has grown by nearly 50% in the last six months to 1,450 patients. We’re even prouder that it now attracts the equivalent of 10% of all newly diagnosed ALS patients in the US. To share what researchers can learn from this model for openness, our own Paul Wicks, PhD, will present a lecture on social medicine at the upcoming 18th Annual Symposium on ALS/MND, which we are co-sponsoring. Please stop by the PatientsLikeMe booth if you’ll be there! MS and Parkinson’s Communities Launched in late spring, our MS and Parkinson’s communities have also experienced staggering, if not meteoric, growth. We are delighted to report that our MS community recently hit a major milestone when it surpassed the 2,000-member mark(!) while our Parkinson’s community …

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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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