Watch, read, cry, be inspired. I sure am.
You may have seen the image before, associated with this quote:
“When I was a boy and I would see scary things in the news, my mother would say to me, ‘Look for the helpers. You will always find people who are helping.’ To this day, especially in times of ‘disaster,’ I remember my mother’s words, and I am always comforted by realizing that there are still so many helpers – so many caring people in this world.” — Mister Rogers
Today, the Washington Post published the full story behind the boy in the photo, written by the photographer’s daughter:
Tommy Paulhamus was born on July 7, 1973. He had hydroencephalitis, a condition where fluid collected around his brain, causing a larger-than-normal skull, and Dandy-Walker syndrome, which affected his balance and coordination. He had shunts in his skull to drain his fluids. His eyes were crossed, and his fine and gross motor skills were impaired. Paulhamus said Tommy was rejected by his birth mother at a young age.
“His mother missed out on a great blessing,” said Paulhamus, who lives in Danville, Penn. “I’m glad his mother gave him up, because I got him. He would say to me, ‘Mom, what would I do without you?’”
I’ve read it twice today and may just read it again.
- Kristen Cerabona, mother of a girl living with CLOVES Syndrome, writing about what it’s like to be a “marathon parent.”
I’m writing an article and would love to tap into this community’s knowledge.
I know of a few examples of clinical practices using Facebook and Twitter to connect with patients, such as MacArthur OB/GYN, but I’d love to learn about other examples, especially ones which use social networking tools to connect patients and caregivers with each other.
Also, I know of patient-led groups which are powerful resources for their members, such as ACOR.org and the many groups affiliated with the National Organization for Rare Disorders, but again, I’d love to learn about some new examples, especially ones which are organized around common conditions like asthma or high blood pressure and (bonus points) have bridged the gap to include connections with clinicians.
Finally, when I think of behavior change writ large (ie, population-level) I think of organizations like Weight Watchers and Alchoholics Anonymous. Are there any other health groups that come close to those two in terms of scale and notoriety? MedHelp claims 12 million monthly visitors, for example. Does anyone else have those numbers?
This post is first and foremost a thank-you note.
Thank you to everyone who posted a comment, emailed me, or tweeted a suggestion in response to my request for input last July: Crowdsourcing a Survey. Six new topics came directly from those conversations. Thank you to Veenu Aulakh and the California HealthCare Foundation who provided funding for the survey. Thank you to Lee Rainie, Kristen Purcell, and Kathryn Zickuhr, my colleagues at the Pew Internet Project who helped mine and polish up the data for the final report: Health Topics.
Here is what we found: There is a health information divide. Pregnancy and childbirth seem to cut across it. Mobile may change it in the future. But for now, significant portions of the adult population do not have access to up-to-date information on drug recalls, food safety, or treatment options. 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.