Last fall, at the e-Patient Connections conference, I gave a sneak preview of some survey results which are set to behave been released on the Pew Internet site on Monday, Feb. 28. I hoped to spark new ideas for a savvy, plugged-in audience and I ended up surprising even myself with some of what I talked about. Watch:
If you were designing a disease treatment system from scratch, bringing together clinicians, patients, researchers, and advocates, what platform would you use to take advantage of the community created by this umbrella group?
This isn’t just some health geek SimCity exercise. I was actually asked that question recently, by people who have lined up the funding and the stakeholders to create a significant new cancer organization in the Netherlands.
As I did my best to serve up relevant insights from my research, I kept wishing I could just replay the Patients and Online Communities panel at Health 2.0 Paris. And now I can:
Ernest Hemingway wrote that Paris is a moveable feast, not fixed in time or place. I think that describes great gatherings of any kind, including great conferences, which begin before the first speaker takes the stage and don’t end simply because the participants have left the building.
Health 2.0 Europe began, for me, in February, when I started thinking about some of the topics that the Patients and Online Communities panel would discuss. My post, “Privacy can kill, openness can heal,” kicked off a discussion about health data rights, the role of health professionals, security/confidentiality/privacy, patient-driven research, and why relatively few patients have joined formal patient communities while naturally-occurring communities on Twitter/MySpace/Facebook have blossomed. Continue reading →
If you follow Jeff Jarvis on Twitter or read his blog, you know (maybe more than you wanted to) about his fight against prostate cancer. I’ve mostly paid attention to what he’s written about technology and journalism, but check out this excerpt from his post, The German privacy paradox:
I prefer to turn the question around now and look at the benefits of publicness that we lose when we make something unnecessarily private. I’ve said that revealing my prostate here brought me great value: support, links to sources of information, incredibly candid and helpful previews from patients who’ve gone before, and the opportunity to spur others to check for the disease. Without revealing my cancer in public, I’d have received none of that benefit. I also argue in WWGD? that there’s value in the aggregation of our knowledge: if we all chronicled what we were doing 24 hours before the onset of my other condition, heart arrhythmia, would doctors find new patterns? If we all shared and could analyze our repair records for our Toyotas, would we surface dangerous flaws earlier? Not revealing such data may indeed someday be seen as antisocial.
Ben, Jamie (it turns out), Gilles, and I will be on a “Patients and Online Communities” panel together at Health 2.0 Paris (along with four stellar EU panelists – check the agenda). It’s a hugely broad topic and I’m already thinking about the issues I’d like to discuss (including openness, health data rights, and whether consumers really understand the choices they make). What else should we talk about?
Update: National Cancer Policy Forum published a book based on the workshop, A Foundation for Evidence-Based Practice: A Rapid Learning System for Cancer Care, which you can buy, read online for free, or download as a PDF. The discussion portion of this panel was captured in a short video.
The Institute of Medicine’s recent workshop on building a rapid-learning system for cancer became, for an hour or so, a seminar on participatory medicine. Continue reading →
Deborah Bell is actively involved in cancer advocacy and manages several online communities for cancer patients, their families, and their friends, having been an ACOR listowner for 11 years, and a listmember for 13. She contributed the following essay:
I know a 15-year breast cancer survivor who was just diagnosed with a recurrence in the same breast. She originally had a lumpectomy and radiation, and it seemed to be over. With a mastectomy looming in the near future, and reconstructive plastic surgery, she said she could handle it, when I asked her. She was okay.
Sometimes my research becomes a little too much for me to bear alone. Like when I find that people living with chronic disease and disability are among the least likely to have access to the internet, but who, once online, are among the most avid e-patients. Or when I am emailing with an ACOR member who has volunteered to talk with reporters, but asks that they call tomorrow because she’s in chemo today. Or when another e-patient asks that reporters call her at work to discuss how her ACOR friends have helped her face the possibility that her cancer has returned; she doesn’t want her two children to overhear the conversation at home. That’s when I think about Tom Ferguson, who not only fought his own cancer, but was a tireless advocate for everyone else to have access to the same excellent resources that he did as a self-care expert and doctor.