Pez Dispensers = Inspiration
Check out the Diabetes Mine Design Challenge winners for examples of how e-patients can help heal health care, as we like to say around here. I’m especially taken with the Pez dispenser-inspired Maximum Slide gadget, but then again I may just be charmed by the comic book presentation of their idea.
Doc Searls: patient as platform and “point of integration”
Note added afterward by e-Patient Dave:
Everyone, please read this post well and understand it well. I think this is a signal moment in our history. As much as I’ve believed in the principles developed by Doc Tom and his e-Patient Scholars Working Group, this issue takes it to a level I’d never imagined. I never knew Doc Tom; thanks to Jon Lebkowsky for tying this together so well.
Open Source advocate Doc Searls of Linux Journal has posted a classic e-patient story, noting the closed and proprietary nature of the healthcare system, calling it “a disease that has to be cured.” Doc was mobilized by his own experience with a procedure called an ERCP (Endoscopic Retrograde Cholangiopancreatography), which had a “1 in 20 chance” of causing pancreatitis. Doc proved to be a one in twenty, and after battling pancreatitis learned that the MRI that led to the ERCP was misinterpreted, the procedure was unnecessary, that he had stumbled into a system that is “built to treat templates, not the pile of combined oddities and typicalities that comprise a sixty-year-old human being.”
He notes that the MRI image files were stored on a CD that his gastroenterologist couldn’t open and that he himself couldn’t read, because they were stored as Windows binaries, and Doc has only Mac and Linux PCs. He asks “Why weren’t the image files in an open format that any machine can view?”
Information Overload: Problem or Not?
In order to take command of your health, you must have access to information. Fortunately, the availability of information has been greatly enhanced by the advent of the Internet. In fact, many people attribute the existence of the modern e-patient to the Internet. Not only is information more available, but through social networking, other individuals with similar interests are more available. The vast array of communities of patients who share links and information online through e-mail, blogs, bulletin boards and other methods attests to this fact. But, are we being overwhelmed?
Common Framework for Networked Personal Health Information
Today, June 25, 2008 the Markle Foundation’s Connecting for Health Initiative, a public-private collaborative group engaging more than 100 organizations representing all major components of the health sector, released a new framework to increase health end-users participation and protect information. ACOR is one of the organizations endorsing the Framework. Entitled “Common Framework for Networked Personal Health Information” it proposes a set of practices that, when taken together, encourage appropriate handling of personal health information as it flows to and from personal health records (PHRs) and similar applications or supporting services.
Participatory Medicine at NIH
I always suspect that audience members have as much to share as I have to say. So when Mary Madden and I received an invitation to speak at the National Institutes of Health we created a participatory talk about participatory medicine: 35 minutes of our findings; 45 minutes of discussion.
It was a blisteringly hot day, so we ended up having 50 people in the room and about 50 more watching the videocast from the cool of their offices on the NIH campus. The video is a little blurry, so I recommend treating it like a podcast and downloading the slides separately, but you might enjoy hearing how we wove together our research on digital footprints, Web 2.0, and health.
Here is a sample of the excellent questions we were asked (and our attempts to answer them):
Is “do-it-yourself” medicine happening online as more people use the internet to get health information?
We have asked respondents about health insurance status over the years to see if people are self-diagnosing instead of going to a doctor. We have not seen evidence for that. We see people using the internet as a supplement, not a substitute.
Welcome, “Reasonably Well”
The Reasonably Well blog is authored by Julia Schulia, a patient of Sjogren’s Syndrome, a progressive autoimmune disease. She read the e-patient white paper (have you?), and she gets it. Welcome to the family!
Have you ever heard of ODL?
I had not until this morning when I read a blog entry from Ted Eytan.
I am not the only one, since a Google search for ODL definition leads nowhere. But I am sure that this is a term we have to learn fast. ODL stands for Observations of Daily Life and seems to be a great term to define what may very well be the most important aspect of health-related social networking activities. It is fitting that we should get acquainted with this new term on the Pioneering Ideas blog of the Robert Wood Johnson Foundation.
Data and Insights on Minority Populations
The Pew Internet Project’s sample sizes for health surveys have been too small to do in-depth analysis on race/ethnicity and economic status. One challenge is that a significant portion of the respondent pool refuses to answer the household income question (the refusal rate can be as high as 20%). So we use education levels as a proxy.
But the Pew Internet Project and other groups do have resources to share regarding minority populations, however you want to define them.
Physician, Teacher, Farmer
Alan Greene emailed this dispatch from Italy:
While attending the 16th IFOAM Organic World Congress, Cheryl and I met a delightful man from the Netherlands named Martien Lankester, executive director of Avalon. He is a physician, teacher, and organic farmer. He remarked that doctors should become more like teachers, teaching people about health rather than just prescribing medicines; teachers should become more like farmers, planting seeds of wonder in their students rather than just giving information; and farmers should become more like doctors, healing the soil rather than just harvesting crops.
I like taking all three roles together as one metaphor of Participatory Medicine — all of us acting as physician, teacher, and farmer at once — teaching people about their health, so they can care for each other and be their own primary care providers, planting seeds of wonder about our own bodies and about the interaction of our bodies with the biosphere, and nurturing the growth of healthy habits and healthy environments for us all.
Psych Central in Time’sTop 50
Congratulations to our own John Grohol, CEO & Publisher of Psych Central, which has just been named one of the 50 best websites by Time magazine!
(Check out the rest of the list. I’m having fun reading up on food ingredients on Zeer.)
white paper
e-Patients:
How They Can Help Us Heal Healthcare
