The PatientsLikeMe research and development (R&D) team is excited about what we can all share and learn in 2011. Here’s a look back at some of what patients like you shared with us, and what we then shared with the world, in 2010.
The R&D team published and presented some unprecedented insights based on what you shared with us this year. In addition to attending and presenting at some noteworthy conferences in 2010, we also published a series of blogs and podcasts pulled together just for you.
Based on your feedback, the R&D team also implemented some changes to the medical architecture that will help improve the research we do, as well as your experience as a patient on the site. Ultimately, we are working to develop tools that help you answer the question: “Given my status, what is the best outcome I can hope to achieve and how do I get there?”
Today and tomorrow, we’ll be highlighting some of the work we’ve done in 2010 focused on various communities. Today, we start with the following (listed from newest to oldest community):
Organ Transplants
- Researcher Catherine Brownstein MPH, Ph.D. presented a poster at the American Society of Nephrology (ASN) Renal Week in Denver. We compared the profile of our Transplants Community to published data from the UNOS/OPTN databases and found that about half of our patients knew about the exact degree of tissue matching they had with their donor. We found the fewest mismatches in organs that had come from deceased, rather than living donors. We also found that within the living donors the closest matches came from siblings, followed by parents, children, and then any other relative.
Epilepsy
- In December, the team attended the annual American Epilepsy Society (AES) conference and presented a poster comparing our data to the Pharmetrics insurance claims database. We found that our Epilepsy Community is a little more likely to be female, more likely to be in their 20s-40s, and that they are more likely to be taking multiple anti-epileptic drugs than the broader epilepsy population. Exploring the biases in our data set and being transparent about them is one of our core values as a science team.
- PatientsLikeMe is running an ongoing patient-reported outcomes (PRO) study with UCB to measure the physical, social and mental well-being of people with epilepsy over time. By the end of 2010, members of our Epilepsy Community had completed more than 1,300 PRO surveys. Thanks to all of you who contributed.
Fibromyalgia
- The R&D team recently blogged about a report comparing our Fibromyalgia Community to the wider fibromyalgia population and revealed we are now able to declare with confidence that our community very closely matches the fibromyalgia community at large.
- In 2010, we published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR). The study, conducted across several of our communities, established a link between sharing health data and benefits experienced on our site. The fibromyalgia-specific findings were that 21% of fibromyalgia members of our site strongly agreed or agreed that they had changed physicians as a result of using PatientsLikeMe, higher than the rate in MS (15%), mood (10%), Parkinson’s (9%), HIV (8%), or ALS (6%).
- In response to popular demand for more research in fibromyalgia, the R&D team has also started reaching out to members of the scientific community to design research studies to take place in early 2011.
Mood
- Looking again at the JMIR study specifically within the Mood Community, we found 26% of users agreed or strongly agreed that using the site had reduced thoughts about self harm; 23% agreed they had decided to start therapy or counseling after interacting with others on the site; and 22% agreed they needed less inpatient care as a result of using PatientsLikeMe. Here’s a video where I present some of these results, and give a walk-through of the Mood Community, at the UMASS Medical School’s Psychiatry Grand Rounds this year.
- We also recently introduced a new tool in all of our communities called “InstantMe” to help you put your experiences in context. Based on the feedback we received from members of our mood community about the pilot tool (called “InstantMood”), it is now available for everybody.
- In response to popular demand for more research in mood, the R&D team has also started reaching out to members of the scientific community to design research studies to take place in early 2011.
More highlights, including a video, coming tomorrow.
