In my first ASCO Connection blog post (10/25/11), I talked about “Participatory Medicine in Oncology” by asking: “What does a healthy medicine and oncology “ecosystem” look like?” I suggested that the e-patient (Empowered, Engaged, Equipped, and Enabled) will be important moving forward in medicine. In a series of three blog posts for the Best Doctors Clinical Curbside, I recently discussed online patient communities (OPCs), as well as online multidisciplinary conferences (MDCs). However, in a recent twitter exchange, I was engaged and challenged by a discussion I had with Suzie Rose (who goes by the Twitter handle of @myelomacinderel) on how self-advocating patients can best engage online.
Here are some excerpts, paraphrased from the original Twitter abbreviations for readability. (If you aren’t used to Twitter, the 140 character limit makes grammar and spelling shortcuts common.)
Suzie Rose asked four physicians on Twitter the clinical question: “Patient progresses with new myeloma lesion during induction therapy for autologous stem cell transplant (ASCT). What do you do clinically?” Three of us replied nearly simultaneously: “We need more information and timing of imaging vs Tx.” One said: “Depends. Sometimes proceed to ASCT, but if florid progressive disease (PD), consider changing regimen first. The response to that from @Myeloma_Doc: “I also agree. But, in general, rarely good to do transplant with disease progression.”
That exchange prompted this question from patient Suzie Rose: “What venues best for complexity? I already know the easy stuff. Your suggestions for a #myeloma forum will be helpful. Thanks.” Myeloma_Doc noted: “This scenario type best reviewed in a formal consult with #myeloma expert.” To which @myelomacinderel responded: “Suggestion for venue where #myeloma case scenarios get feedback. Not a consult. Please help. . .” She also noted that she was “betwixt and between” being a new patient and being a physician expert. She wanted more than basic information as often found on the Internet (even if from a reputable source like Cancer.Net or a myeloma center), and she wanted it personalized to her specific molecular disease. She may also not benefit completely from programs like ASCO’s patientACCESS, which provides free patient access to the ASCO JCO and JOP journals.
When the feasibility of scaling from one motivated patient to a subset of all myeloma patients was questioned, Suzie Rose noted: “Economics rules again. What happened to learning for free? The quest for knowledge.” And @Myeloma_Doc replied that the “Issue is not economics. Important to get full picture to individualize best advice” and “Full picture = patient input. We need the patient for patient-centered therapy.” Dr. Tomasson (@MTomasson) joined the conversation with “Interesting idea…I can imagine ways to make it work.”
So, one thing that sprang out of this discussion was to start a Twitter discussion group on multiple myeloma potentially using the #mmsm flag suggested by Matthew Katz, MD (@SubAtomic Doc) in “Hashtag Folksonomy for Cancer Communities on Twitter”). In fact, a fellow Tweeter (@VincentRK) recommended that I do just that. It still leaves us with the question—how does the Empowered, Engaged, Equipped, and Enabled e-patient find information for independent learning when they already know the easy stuff?
I don’t think an #mmsm tagged Twitter discussion is the full answer, but we are looking to try it out and see what happens. There are examples where this has worked such as the #bcsm (breast cancer social media) Twitter discussion group.
Please join us and give us your comments below…
Note: This was a public Twitter conversation. The participants involved reviewed this blog post and were asked to feel free to comment online.