Science seeks certainty. The problem in medicine is, the body is complex and our knowledge is incomplete. People who want certainty – physicians or patients – are kidding themselves. And if we expect docs to be perfect, it’s a setup for dysfunction.Sometimes I hear of patients who believe their physicians dissed a proposed or experimental treatment that’s not understood. (I’m not endorsing wacky treatments here – I’m only talking about uncertainty.) ...
Dave deBronkart
Every new scientific finding to be nothing more than a first draft
A recurring theme on e_Patients.net is the need for empowered, engaged patients to understand what they read about science. It’s true when researching treatments for one’s condition, it’s true when considering government policy proposals, it’s true when reading advice based on statistics. If you take any journal article at face value, you may get severely misled; you need to think critically.Sometimes there’s corruption (e.g. the fraudulent vaccine/autism data reported ...
Practice variation from the perspective of an e-patient
One of our purposes e-Patients.net is to help people develop e-patient skills, so they can be more effectively engaged in their care. One aspect is shared decision making. A related topic, is understanding the challenges of pathology and diagnosis. Both posts teach about being better informed partners for our healthcare professionals.I’ve recently learned of an another topic, which I’m sure many of you know: practice ...
How the mobile internet can transform healthcare
Our colleague Susannah Fox of the Pew Internet & American Life Project has done much research about trends in mobile, particularly about health.In contrast, Meeker focuses on overall big trends. She sees aspects I’ve never noticed, like what-all constitutes mobile: when I hear the term, I think handheld phones (iPhone, Droid, Blackberry), but she makes the case that mobile web access (and other wireless) is much more than phones.As we ...
Patients will choose their medicine, based on their doctor’s advice
TEDMED is a truly extraordinary conference in San Diego, a fall sibling of TED talks focused on medicine. TED talks are just 18 minutes long, chosen and designed to blow your mind. They don’t all hit that level, but many do.True to form, the opening session was a mind-blower. 26 year old Charity Tillemann-Dick stepped out on stage and belted out a soprano aria. I thought that was ...
Patients seeing the visit notes their primary physicians entered
This item has nothing to do with OpenNotes itself – it’s what I’m seeing now that I’ve started accessing my doctor’s notes. In short, I see the clinical impact of not viewing my record as a shared working document.Here’s the story.In OpenNotes, patient participants can see the visit notes their primary physicians entered. Note – primary, not specialists. I imagine they needed to keep the study design simple.So, ...
Why health IT usability matters to patients
It’s widely rumored that a health IT industry executive was unhappy about suggestions that systems have to be usable in the eyes of employees who use them while caring for us. (Us. The patients. Your mother.)According to the rumor, the exec said, “Over my dead body.” As if he ran the agency.Whether or not the rumor’s true it’s not funny. So when I was asked to represent the patient perspective ...
OpenNotes and whether patients should see their medical notes
The opening anecdote of the e-patient white paper tells of a patient who impersonated a doctor in 1994, to get his hands on an article about an operation he was about to have. He got busted. Two years later episode 139 of Seinfeld had something similar – Kramer impersonates a doctor to try to get Elaine’s medical record.It aired October 17, 1996. It was a turning point in ...
Laugh, Sing, and Eat Like a Pig: Facing death, with hope
An excerpt from Laugh, Sing, and Eat Like a Pig.
Last month Dave deBronkart, known on the internet as “e-Patient Dave,” released his first book, Laugh, Sing, and Eat Like a Pig: How an Empowered Patient Beat Stage IV Cancer (and what healthcare can learn from it) (www.LaughSingBook.com). It’s his personal cancer story – excerpts from the journal he ...
Participatory medicine and evidence from medical journals
I’ve only been studying healthcare for two years and I hesitate to be overly assertive.But I have, finally, reached the point where I feel confident in citing cases where people are simply being unscientific: ignoring evidence. That’s always hazardous, and it becomes insidious when it’s caused by a blind, unquestioning belief in our institutions.Case in point:Julie Thoren is an active practitioner of Participatory Medicine who’s seen first-hand the tremendous value ...
A patient in chief is what American healthcare needs
“These are exciting and very promising times for the widespread application of information technology to improve the quality of healthcare delivery, while also reducing costs, but there is much yet to do, and in my comments I want to note especially the importance of the resource that is most often under-utilized in our information systems – our patients.” – Charles Safran MD, testimony to the House Ways & Means subcommittee on health [Emphasis ...
Medical compliance from a patient perspective
The new definition of participatory medicine at the Society’s website notes that patients “shift from being mere passengers to responsible drivers of their health, and … providers encourage and value them as full partners.” As with any collaboration, this must include a hefty dose of listening by both parties.I recently returned from an extraordinary week in Minnesota, with visits to several thought-provoking care facilities. The week was all about ...
