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 own health conditions? What does PatientsLikeMe mean for the medical establishment?
PatientsLikeMe is a tool that allows patients to manage their disease with a sophistication and precision that would have been unimaginable just a decade ago. The 7,000 members of PatientsLikeMe, in other words, are beta testers — they may be the vanguard of how we all will care and treat our résumé of chronic diseases.
The article cites the PatientsLikeMe Openness Philosophy; the manifesto that draws our company line in the sand. Openness can lead to better outcomes and accelerate research like never before. This is our goal for PatientsLikeMe. This isn’t health science fiction. It’s happening today with the help of thousands of patients.
So read the article–and join PatientsLikeMe–to see where you stand.
I just finished the article and sent it to friends and family. Thank you so much for giving so many people a chance to be able to take back responsibility for their own health, and treatment. Knowledge is DEFINITELY power!
I saw the article in the New York Times today and took a look at your web site. I was wondering if there are any future plans to gear a section of your web site towards women dealing with metastatic breast cancer. I have long been a big proponent of the concept of advocacy in medicine, even many years before I found myself in this situation. I truly believe that without an advocate a lot of major mistakes are made. Please let me know if others are interested in disussing this, particularly with regard to metastatic breast cancer. Thank you very much.
“Meg”
Maggie, we aim to help people have the best dialog with their health care team so that outcomes can improve. More information should drive that. Thanks!
Meg, we have numerous requests for breast cancer and it is part of our future plans. Stay tuned!
David — Great NYT story — great news for PatientsLikeMe! Very powerful!
Congrats on making it into the NYT.
I’m a physician with an interest in disease management and review the implications of patientslikeme from a population-based care POV on the disease management care blog. Whether you guys realize it or not, you’ve taken “open sourcing” and “translational research” to a whole new level.
Wow.
Fantastic Article in the Times Magazine
As an employee of a large medical device company, I know that our technology ultimately improves patient care. Unfortunately, I feel disconnected from the patients that we assist & am excited to learn about technologies that can help patients more directly.
I’ve also been trained to really love data! The combination of real quantitative data, direct patient interaction, community & emphasis on preventative medicine is very exciting.
I’ll stay tuned to see how you grow this business, improve patient care and help lower health care costs…
Thanks…