Tag: online patient communities
Listen up
Like millions of other people, I became hooked on “Serial”, the 12 episode podcast series that launched in late 2014 investigating the murder of a teenage girl in Baltimore in 1999 (that included phone conversations from prison with her personable ex-boyfriend who was convicted of the crime).
I don’t listen to a lot of podcasts but this was different. It was chatty, used a lot of personal stories and was the perfect thing to listen to while driving, walking or cooking. And I couldn’t wait for the next episode (nor could my 84-year-old mother or my 20-something daughters). Devoting over 10 hours to the program was not only easy but enjoyable. In the process we listeners also learned stuff – about the workings of the legal system, the nature of truth, the problems with first-hand accounts, the limitations of memory and much more.
It was like nothing I had ever experienced before and got me thinking about how we could use a similar strategy in healthcare.
The wisdom of patients
Last week was the third anniversary of the death of my lifelong friend, Judy Feder. In 2001, Judy was diagnosed with Stage IV breast cancer at the age of 45.
I was involved in a health internet start-up at the time and knew about Gilles Frydman’s pioneering work in creating a collection of online patient communities called the Association of Cancer Online Resources (ACOR). Judy joined the group for patients with metastatic breast cancer. She embraced online communications (perhaps at least in part because she was a public relations professional) and participated in a second breast cancer online community called BC Mets as well. You can read about her 8-year breast cancer journey in this article in the Journal of Participatory Medicine, the journal of the Society for Participatory Medicine of which she was a founding member.
New types of evidence
It can be difficult to figure out how to use the results of research studies (randomized controlled trials or RCTs) to make a healthcare decision. There are many other problems with RCTs that may be less obvious.
First, to perform an RCT can take years – you need to get approval from the hospital where you are performing the study because you are doing research on humans. Then you need to get funding for the study so you may need to apply for some grants. After the study is completed, the results need to be analyzed; and then a paper needs to be written and submitted for publication to a journal. It could take years from the time the results are known until the time they are published.