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.
Tom, Gilles Frydman and I were working on a draft of the second “E-patients Survey” when Tom died in April 2006. We posted the survey to ACOR.org in November 2006 and within a week had gathered 1,680 responses to the 20+ essay questions. I paired quotes from those essays with telephone survey data and published the report yesterday, “E-patients With a Disability or Chronic Disease.” One reason it took me so long to write the report was that I had to read the ACOR essays in short sessions, taking a break when I encountered responses like this one to a question about the downsides of an online support group: “Feelings of depression when listmembers die.”
After a while though, those responses were what kept me at the keyboard, urging me toward the finish line of a published report and some public attention for the internet’s impact on health and health care. As Deborah Bell, an ACOR list-owner, wrote to me last week, “Interestingly, someone at a conference last year asked me why I was so sure I was right about ACOR. That’s very hard to answer, other than: it works. It can be depressing, but I have seen it save lives. Someone in a rural area gets information that would be impossible to acquire locally. Even for people in large cities… they may hear about treatments that their own doctor isn’t aware of. It works. Not very fancy, no pretty web screens, no chat rooms, but it works.”