Lee Rainie, director of the Pew Internet Project, presented this wonderful overview of the Project’s health findings at Providence St. Joseph Medical Center in Burbank, CA, on January 12.
When it comes to news sites, I love scanning readers’ comments as much as the original articles. Comments are an unfiltered feed, a window into public opinion (in other words, catnip for someone like me).
One thread caught my eye recently. Ron Winslow wrote a very nice piece in the Wall Street Journal about how clinicians are tapping in to existing networks of patients. See: “When Patients Band Together: Using Social Networks to Spur Research for Rare Diseases; Mayo Clinic Signs On.” Reader comments filled in blanks left by the article, which was a lovely introduction about one example of peer-to-peer health care, not a definitive guide. The article — and the comments — are having a significant impact, as this comment from Katherine Leon shows:
It has been a tremendously exciting week. We’ve heard all sorts of wonderful stories. An ER doc read the article in the morning, and that afternoon, realized he was treating a woman with SCAD — the first case he’d seen in 9 years. Women with recurrent SCAD are sharing the article with their doctors, and vice versa. Men are benefiting too; a cardiologist in Italy contacted Mayo about a man and woman being treated for SCAD in his cath lab. They are applying to the virtual registry.
So as you say, the power of patient groups works!
Indeed, the power of patient groups is in full effect here, but so is the power of the mainstream media. Continue reading
Sadia Ismail and Graham Mulley paint quite a picture in their opening lines:
From 2 pm they gather at the entrance to the ward, occasionally drifting through the doors, only to be reminded by sister that “visiting starts at 2.30 pm.” Doctors cower in the office, completing paperwork and dreading that journey to the bedside for a drug card, fearing they may pay the price with a long tirade from a patient’s relative.
It reminded me of what Tom Ferguson wrote in Chapter 4 of “e-patients” (see p. 57, under “Forgotten Heroes”):
[Family caregivers] outnumber all other types of health care workers combined by a factor of four to one, yet they often feel like the odd person out when dealing with hospitals and medical professionals. In the world of Health e-Communities, they are first-class, not second-class, citizens and frequently serve as the group’s mainstays, organizers, and hosts.
Ismail and Mulley conclude their article with a call for flexibility and mutual understanding:
We believe that a shift in culture is needed to ensure the best practice on visiting policies. Any visiting restrictions should be based on mutual respect and consideration. Health professionals should consider the rights, worries, and needs of patients and their families, and visitors need to understand the roles and pressure on staff and the needs of patients other than their own relative. Perhaps patients’ control of their visiting hours in the form of a contract may help, and this merits formal study.
We talk quite a bit about how most health care happens outside a clinical setting, but I think this article brings up important questions about how expectations are also changing in hospitals.
Don Kemper, CEO of Healthwise, calls on us to continue the debate that he & Tom began many years ago with a post about his “Three Simple Rules”:
The Self-Care Rule: Help people do as much for themselves as they possibly can.
The Guidelines Rule: Help people ask for the care they need.
The Veto Rule: Help people say “no” to care they don’t need.