A quick but relevant addition to the posts on online support for medical conditions, if I may (see, for example, today’s “Getting Support for Bipolar Disorder Online,” or last month’s “Twitter and Mental Health: Getting the Most Out of Your Tweeting Experience” for some mental health examples).
Patientslikeme is a support and informational site inclusive of 154,826 patients (at last count, to be precise), and over 1,000 medical conditions.
Drug addiction, prostate cancer, yeast infections, dysthymia, epilepsy, bipolar disorder, major depressive disorder. . . I’m really just getting going on the conditions addressed.
For starters you can explore treatment options. For each option–and they’re not all medications; individual therapies are included like cognitive behavioral therapy and peer counseling–you have overviews (purpose and efficacy, side effects, dosages, and reported adherence, burden and costs), patient evaluations, and general drug information.
But most importantly you create a home page with your health data, providing your condition history (signup is free and can be done under a pseudonym). There’s a section called ‘My Journal,’ where, as the site explains,
is where you can come to tell your story. Every time you update your health data, you can come here to add a comment, photo or story to your update by clicking ‘Share more about your experience.’ This will help other patients learn more about what is going on with you.
The second most crucial component (of many; it’s quite a multi-facted site) is your ‘Feed,’ which is, as they so eloquently put it
is a way to interact with the people you meet on PatientsLikeMe, as well as stay up to date on what matters to you most. You’ll see updates to the people, conditions, organizations, symptoms, treatments and forum threads you follow and have an opportunity to comment on those updates.
In a most Twitter-like fashion you follow others and they follow you (you even use the @handle to mention others), and the merry support game begins.
Notably, it’s also a great tool for charting your illness’s ups and downs. You can create a graph for just about anything, from Quality of Life to hospitalizations, to your mood to weight to lab results. The site will generate doctor visit sheets with lists of current treatments and symptoms charts.
The more detailed the information you put in, the better it’s able to match you with followers with whom you can connect and relate.
It thus operates–most ably–as a support site, and as place to record the details and history of your illness.
Not too shabby, given the cost.
- Getting Support for Bipolar Disorder Online: Some Suggestions for Streamlining the Process (candidaabrahamson.wordpress.com)
- New e-patient network wants to take the hassle out of finding health info online (medcitynews.com)
- The Match.coms of clinical trials make it easier to connect patients, researchers (medcitynews.com)