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 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 29th, 2011 by DavedeBronkart in Research
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The Society for Participatory Medicine was well represented last week at the 14th ICSI/IHI Colloquium. (ICSI is the Institute for Clinical Systems Improvement, a small midwestern think tank that’s way too poorly known.) SPM members who presented:
- Jane Sarasohn-Kahn of Health Populi gave the keynote for Day 2
- 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.)
- Brian Ahier presented on the status of health IT, as Meaningful Use rolls out. (“You can’t measure the improvements that you gotta measure, unless you have computers keeping track of it.”)
- I gave a half-day pre-conference workshop titled “Participatory Health: Reshaping Patient Care.” I’m told the workshop had 40-50% higher registration than usual: interest in participatory medicine is strong.
An unexpected bonus was that right outside the workshop door, a poster presentation addressed some questions people often ask about patient participation and online health records:
- Will patients with problems actually use a PHR (personal health record)? (Many observers say PHRs are a non-starter, a pointless exercise.) Read more »
*This blog post was originally published at e-Patients.net*
May 23rd, 2011 by DavedeBronkart in Health Policy, Opinion
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*Editor’s note: Dave would like readers to check out the comments section in the original post for his full views.*
A lot of people are intrigued with using “cloud” applications and storage for personal health data. This week we’re seeing what I think is the final nail in the coffin of “cloud only” for anything important. You gotta have offline backups: two huge cloud vendors – Amazon and now Google – have demonstrated that even they can go down, leaving their users absolutely powerless.
Cloud computing (Wikipedia) is hugely attractive to software developers and businesses. As shown in this diagram from Wikipedia, the idea is that you do your computing using storage or tools that are on some computer somewhere out there “in the cloud.” You don’t know or care where, because somebody out there takes care of things. As your business or database grows, “they” take care of it.
And it’s real – it works.
But when “they” screw up, you could be screwed.
Last month Amazon Web Services went down for a couple of days. PC Magazine posted a good summary, and many of us learned that well known companies like Hootsuite and Foursquare don’t actually own the computers that deliver their product: they rent services from Amazon Web Services (AWS). So when AWS went down, there was nothing they could do to help their customers. 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*
