July 23rd, 2011 by Dr. Val Jones in Health Tips, Opinion
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Alright, I admit that the title of this post is a little dramatic. But it really does seem that most people I know socially have had a bad experience with the healthcare system lately. Take for example my friend whose 3- year-old went to the hospital for a common pediatric procedure – the little girl was overdosed on a medicine, aspirated, got pneumonia, went into respiratory distress (noticed first by her mom) and remained in the pediatric ICU for several days. The hospital staff swept the overdose under the rug, and outright denied it happened when faced with direct questioning. As outrageous as that all is, my friend chose not to pursue action against the hospital and staff for their error and behavior. She just “let it go” because no permanent harm had occurred.
Another dear friend was recently misdiagnosed with having a pulmonary condition when he was in heart failure from an arrhythmia… and almost had a stroke during a contraindicated pulmonary stress test. His simple conclusion: “doctors suck.” Was anyone held accountable for this? No. Again because no permanent harm had occurred.
Just the other night I was having dinner with some visitors from out of town. They both told me Read more »
July 2nd, 2011 by DavedeBronkart in Opinion
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e-Patients who want to collaborate with their physicians, and be responsible for their medical decisions, need to clearly understand what constitutes good evidence. It’s not always easy.
Now Richard Smith, a 25 year editor of the British Medical Journal, has written another piece for the BMJ blog, citing a JAMA study showing “that of the 49 most highly cited papers on medical interventions published in high profile journals between 1990 and 2004 a quarter of the randomised trials and five of six non-randomised studies had been contradicted or found to be exaggerated by 2005.”
What’s an e-patient to do?? Especially when we “patients who google” are so often sneered at by physicians who rely on these same journals.
Well, we need to educate ourselves, and learn to speak calmly, confidently and understandingly to anyone who doesn’t understand – just as we expect clinicians to do with us.:–) In short, we need to Read more »
*This blog post was originally published at e-Patients.net*
June 11th, 2011 by StevenWilkinsMPH in Opinion
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When you or I visit an accountant, a lawyer or car mechanic, we know what our role is and have a pretty clear understanding of what the ” expert” is supposed to do. But when it comes to a trip to the doctor these days the roles and responsibilities of patients and physicians have become blurred and unpredictable…and the patient seems to generally be on the losing end.
Take my Mom’s case. My Mom who was 89 years old and evidently had severe osteoarthritis. She never knew that even though she was been seen every couple of months by her Internist for years and years. It’s too bad…because my Mom died last week from complications due to a compression fracture of her spine. Turns out her spine was very fragile according to her consulting Neurosurgeon but no one ever told her.
The first question that entered my mind when I heard of her condition was why didn’t her primary care physician “pick up” on the severity of her condition before she fell and fractured her spine? Read more »
*This blog post was originally published at Mind The Gap*
June 10th, 2011 by DavedeBronkart in Opinion, Patient Interviews
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Ten days ago a post here mentioned the 14th ICSI / IHI Colloquium. I said the Society for Participatory Medicine was well represented, including:
- Jessie Gruman, four time cancer patient and founding co-editor of our journal, gave an important breakout session, about which I’ll be writing soon. (Jessie is founder and president of the excellent Center For Advancing Health.)
Jessie’s talk was so good it had me going nuts on Twitter – I couldn’t keep up with all the “tweet-worthy” things that came out of her mouth.
Well, I’ve just re-read her text, and it brought back why I went nuts. I was going to write about it, but I’m just going to post the full text.
For those who don’t know, last fall Jessie underwent surgery for her fourth cancer; she has some experience. Read more »
*This blog post was originally published at e-Patients.net*
May 7th, 2011 by DavedeBronkart in Health Tips, Opinion
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A vital aspect of participatory medicine is helping patients learn how to participate. This week I saw a great example of someone who’s doing it right. Here’s the story, including the patient aid for download.
We hear a lot about “patient-centered”: patient-centered care, patient-centered thinking, everything. Frankly, a lot of it strikes me as patient-centered paternalism: people mean well, but patients sense that the thinking didn’t happen while standing in patients’ shoes, because the advice, policies, and publications just don’t hit home. It’s like somebody guessed what you want, instead of knowing (because they’re like you).
A couple of years ago I learned about Planetree, a terrific, small organization in Connecticut that’s been thinking from the patient’s point of view for thirty three years. (Yes, since 1978. Why are they not better known??)
This week I attended a live webcast at a “Planetree designated” hospital, Griffin Hospital, in Derby CT, produced by HealthLeaders Media. When somebody’s truly patient centered, you rarely hear a puzzled “Do people really need that?” or “Isn’t this good enough?”, because they start with what patients want. (See founders’ story at bottom.)
A great example is this booklet about CHF (congestive heart failure), which Griffin Hospital was kind enough to share. (Click the image to download the entire PDF, (1.7MB).) In my day job I did a bit of instructional development, so I can appreciate how well this was done: the “to-do” items are clearly presented, with NO extraneous explanation, and top-class use of icons and images. It’s all essential information, clearly presented, and nothing else. It’s what you need to do to succeed as a patient. Read more »
*This blog post was originally published at e-Patients.net*
