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”.
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 in our PatientsLikeMe communities. I wouldn’t have made it this far into motherhood without the nitty-gritty, honest information that other mothers have shared with me, and I’ve been truly and deeply inspired by the information that people have so willing shared on our site. I would certainly want access to that knowledge and experience if I needed it. But, if I want to have access to that kind of information, then I have to do my part too. So in the end, I decided to spit. Now I’m waiting to find out what my genes have in store for me and my family. Openness, here I come.
Our members are very enthusiastic about the value generated by sharing their information. So much so that recently two of our members decided to don their hard-earned PatientsLikeMe t-shirts and share their experiences using PatientsLikeMe with their local MS support group. They recruited several new members at the meeting and gave more information about PatientsLikeMe to everyone. Our members believe that the more information we share, the easier it will be for patients and doctors to see what’s working for others and for scientists to use the data to develop new treatments faster. This is a great example of patients helping other patients and we love seeing our members share, online and in real-life. Thanks!
Learning from each other can be addictive, and even fun at times. One of our more prolific (and outspoken and creative) MS members, Keeping On, decided to celebrate her 1000th post with a musical salute to some of the most humorous posts and posters in our MS community. So she got together with another witty member, sacleveand, to produce and star the video “We Have MS Together!”
Six months after its public launch, the MS PatientsLikeMe community includes over 1 in 200 MS patients in the U.S. and the rate of growth continues to escalate.
To mark the occasion and experiment with new community tools, we put together the first PatientsLikeMe community report. In this report, we begin to paint a portrait of the MS community, who is in it, and how the community compares with previous research on MS. This post features portions of the report.
In the descriptive section we discuss characteristics of the user base such as what types of MS users have. As you can see in the figure below, all types of MS are represented with 61% of users report having relapsing and remitting MS.
The report also explores research questions that the size of our community now allows us to address. For example, we look at the many ways MS first manifests itself – the variety of initial symptoms. In the figure below, we chart how two different types of MS (relapsing-remitting and secondary progressive) first appeared. The most common first symptoms for both types were “sensory changes” and “optic neuritis.” But “Difficulties walking” was a more common first symptom for relapsing-remitting MS than for secondary progressive MS.
If you have MS or are a caregiver to someone with MS, take a look at the report posted on PatientsLikeMe. Note: requires registration on the site.
Based on feedback, we will be integrating some of the elements into an new upcoming area on PatientsLikeMe. Stay tuned!
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!
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.