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Search Results for: e book

October 2, 2012 By e-Patient Dave 3 Comments

OpenNotes: The results are in. GREAT news for patient engagement.

In the past year I’ve often mentioned the OpenNotes study. Results are in! This is copied from my post last night on e-patients.net:

Regular readers know that we’ve long anticipated the result of the OpenNotes project. Our first post about it was in June 2010:  “OpenNotes” project begins: what happens when patients can see the physician’s visit notes? It tied the issue all the way back to the birth of the Web, in 1994:

The opening anecdote of the e-patient white paper [20th page of this PDF; 23rd page in the Spanish edition] 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: (Click to watch it on YouTube; they won’t allow embedding on other sites.)

Now, the Robert Wood Johnson Foundation (RWJF) is funding a study called OpenNotes to explore taking it a big step further: what happens if patients can see, online, every last bit of what their doctors wrote?Do doctors get overwhelmed with questions? Do patients freak out when they read the ucky medical words that doctors write? Does the world go to hell in a handbasket, as some have worried aloud?

The results were released at 5:00 p.m. ET Monday, in a new article in the Annals of Internal Medicine. (See the OpenNotes website.) Co-lead authors Tom Delbanco MD and Jan Walker, RN, MBA shared a pre-release copy with e-patients.net. They describe the study’s intent: [Read more…]

Filed Under: Government 3 Comments

September 28, 2012 By e-Patient Dave 1 Comment

Links for Cooper and Partners “Work Well 2012”

I’m speaking today at a relatively new type of event for me – worksite wellness. (I often speak at conferences that include employers, and in May I spoke at the Rich Products company health fair, but this is the first event that’s a seminar for HR and wellness executives about worksite wellness.) The host is Cooper and Partners, a company whose professional content and image are amazing given their new-company status. Keep an eye on these folks – they know what they’re doing.

Here are some sites and resources I’m mentioning.

ePatientDave.com (This website – subscribe free – see box at right)

Society for Participatory Medicine
(“the e-Patient society”)

  • Join as a corporate and individual member
    • Volunteer to lead an initiative (email)
  • The Society’s website
  • The Society’s blog, e-patients.net where I write from time to time (as others do). Free subscription.
  • Journal of Participatory Medicine (peer reviewed journal with narratives and evidence on the status of the movement). Free subscription.

Resources for e-Patients [Read more…]

Filed Under: Events 1 Comment

September 7, 2012 By e-Patient Dave 10 Comments

“Visible” is not “transparent.” Let us see prices.

Note addition, Nov. 28, at bottom.

A (ahem) friendly suggestion: let’s be explicit in what we ask for. Here’s a recent pet peeve :-) …

“Visible” is not “transparent.”

I keep hearing complaints about irresponsible patients as a leading cause of our cost problems. But, hospitals, insurance, and policy people: Don’t complain about our spending if you can’t tell us what it’ll cost before we make decisions. If you don’t know, you’re out of control – don’t blame patients for that.:-)

See, “visible” describes the thing we want to see. (Prices.) “Transparent” is an abstraction. It diverts attention from the prices, by focusing on the barrier.

If we can’t see prices, how can we control them?

If you go into a restaurant and the menu has no prices, how are you supposed to stick to a budget? Yet in last year’s Health Leaders reader survey, patient irresponsibility was listed in the top five causes of rising costs – and nowhere did they note that inability to see prices might be a factor.

Here’s the impact on ordinary citizens: If I mention “transparency” to people in my community, most have no idea what I mean. But when I say “We need to see what things cost – and nobody can tell us,” everybody does see what a problem that is.

Visible prices, please. Before we make our purchase decisions.

Added Nov. 28:

A few weeks later I was in a Mexican restaurant, and the menu illustrated this point, and posted on Facebook:

Margaritas menu Sept 2012

“Health policy lesson: this drinks menu has no prices – do you ask for ‘price transparency’? No, you ask for the prices! (Unless you’re a sucker.) Sometimes in healthcare we leave our common sense behind; easy to fix. Just realize it.”

Filed Under: Uncategorized 10 Comments

September 5, 2012 By e-Patient Dave 3 Comments

New collaboration: Perry Cohen on ethics in research and patient-centered outcomes

This is the second in a new series on patient participation in guiding medical research.

Perry Cohen, 2012
2012, on the Michael J. Fox Foundation blog
Perry Cohen some years ago
Perry in Africa, 2008

Perry Cohen is a new friend and, I’m thrilled to announce, a new collaborator.

I learned about Perry during my MIT college reunion this June – my classmate Becky Donnellan heard about my work and said “You should meet Perry,” whom she’d met somewhere along the line. On my next trip to DC I met up with him, and indeed we hit it off.

But I’m not thrilled with the reason we need to collaborate: Perry has Parkinson’s Disease, and, as he puts it, “I’m losing my voice.”

That’s no small issue, because for sixteen years Perry has been a powerful and effective voice for the Parkinson’s patient perspective at the National Institutes of Health and the Institute of Medicine. In the progression of his disease, at present we can speak on the phone just fine, but the adrenaline of giving a speech – which he’s good at – is too much. In February he froze up, on stage, for two minutes, and had to be helped off.

So he’s asked me to help with his public speaking.

In this post I’ll introduce Perry, describe how we’ll be collaborating, and close with a specific example that shows how strongly he and I are aligned: an article he co-authored five years ago that blew my mind last week. (I mentioned it in Saturday’s post that began this series.)

[Read more…]

Filed Under: Uncategorized 3 Comments

September 1, 2012 By e-Patient Dave 13 Comments

New series: Understanding and Guiding Medical Research

With my doctor in an exam room
With my primary physician, Dr. Danny Sands, in a BIDMC exam room

Some edits made, and new items added, late the same evening.

I’ve recently learned of some well-intentioned medical research that disturbs me so deeply that I think it’s time to get formal about teaching e-patients and their partners how to detect research that misses its target, even if it’s well intentioned.

Doing this responsibly requires a deep understanding of the purpose of research and its methods. So this is the start of a series in which I’ll lay out what I’ve learned so far, describe the problems and challenges and opportunities that I see, and invite dialog on where I’m wrong and your own experiences as patient or clinician or researcher.

If this succeeds we’ll have a new basis for considering questions of what to do and how to prioritize it, in this era of change in medicine – not just in research but in all of medicine, as we work on reducing our spend. My goal in the series will be to be as clear in my writing as I can, while being as verifiably accurate as I can, given that I’m no PhD or Pulitzer laureate. Critique and correction are welcome.

This first post is an introduction, with background reading.

Context: Patient Engagement

[Read more…]

Filed Under: decision making, Participatory Medicine 13 Comments

August 23, 2012 By e-Patient Dave 9 Comments

Neuropathy + chemo brain: Urgent request for expert consult

Lodewijk Bos portraitLodewijk Bos (Twitter @ICMCC), is a good friend in Holland – my wife and I have visited him twice. (My US friends always wonder about the name – Lodewijk (“lodevike”) is the Dutch equivalent of Ludwig.)

Lodewijk has an extraordinary medical history – he theoretically shouldn’t be alive today but he continues to beat all odds. One factor has been his incessant research: an ultra-e-patient, multi-degreed (bio here), author of several books, publisher of the great ICMCC site on health IT (“compunetics,” actually), and editor of the Springer journal Health and Technology, he stops at nothing.

Well, Lodewijk is “Unhappy again,” as he puts it mildly, at the end of his rope again, this time with pain and chemo fog.  I can’t explain it precisely so please see his post, pass this around, and if you find anyone who might be able to help, have them reply on his blog.

A few bits from his post:

On July 2 I had surgery on my left foot … from there on it went wrong, seriously wrong. I was told I should not stand or walk on that foot for at least two day. And I was sent off, on foot. So by the time I arrived at the reception desk 5 floors down … I was given new bandaging and this time someone went to find a wheelchair.

Previous conditions and treatments have left him with neuropathy (nerve damage, causing continuous pain). This new wound wasn’t healing, so days later he contacted a previous wound nurse, who …

… suggested a new kind of bandage Promogran Prisma. And lo and behold, it seems to work. [But] my neuropathy worsened.

The open wound on top of my neuropathy was already hell, but that diminished considerably after a couple of days. However, after applying the new bandage, my foot started hurting much more, but above all, my chemo brain came back in full force. [It can recur years after chemo ends.] When I get out of bed I stumble, having to catch myself not to fall.

After 5 minutes that acute problem disappears (balancing problems remain however), but then the next one appears. My eyes start to spontaneously turn [toward the] nose bridge, as if I were squinting. Which makes concentrating a very complicated business. Combined with the physical balance problems, it leaves me, activity wise, almost paralyzed. Oh, and my tinnitus is worse than it has been for years.

I sincerely hope that the wound heals soon. … walking is no option, the wound is over 1,5 cms large. .. and if you know of any neurologist who might be knowledgeable about this kind of problems, please contact me in the comment field.

Here’s hoping our network of connections can help this time.

Filed Under: e-patient requests 9 Comments

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