e-Patient Dave

Power to the Patient!

By 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…]

By 6 Comments

Perceptions creating reality: the scapegoat dynamic and the role of the patient

TEDMED Great Challenge: Role of the PatientThis post brings together several threads from the past year’s work. At the core is one of the Great Challenges for TEDMED 2013: The Role of the Patient. Roles exist in a context, and a new perspective on this context came to light today.
_______________

Those who’ve seen me speak know I spend a lot of time thinking about the underlying structural issues that keep healthcare from evolving. In particular, leaders like Warner Slack MD have been saying since the 1970s that patients are the most under-used resource in healthcare.

But many in the profession can’t imagine that participatory medicine could be valid.

Why? Why do so many physicians, administrators and health policy people roll their eyes at the idea of patient as partner? (Many don’t, but many do.)

I don’t ask this as a whine, I ask it as an inquiry.

Paul Levy is the former CEO of my hospital, Beth Israel Deaconess Medical Center. He’s also the one who introduced me to Dr. Danny Sands, my famous primary physician, who practices at BIDMC, saying “You’ll probably like this guy.” Well, GOOOAAALLL!, as they say in soccer. Which Paul plays, coaches, and referees. (He’s skinny.)

Today on his blog Paul writes How a Team Degrades. It’s a tale of a Lean exercise his hospital used, which he connects to a recent soccer episode. And I see a parallel with the role of the patient.

The Lean exercise:

A group of colleagues sat around a table and were given a problem to solve.  Each person wore a hat with a label that could be seen by everyone at the table, except the person wearing the hat.  The label might say “whines,” “creative,” “combative,” “unintelligent,” or some other characteristic.

Strikingly, within just a few minutes, people at the table began to treat each person as though the assigned characteristic were true.

[Read more…]

By 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…]

By Leave a Comment

My slides from the Amazing Speeches panel

I’m live-blogging this from the Amazing Speeches session at the Partnership With Patients conference in Kansas City. As promised, here are the slides I just presented.

Here are the three of us who presented – a picture I just grabbed from Twitter, of course. :-)

From left: @TiffanyAndLupus, me, @KaitBRoe.

(Yes, I’m listing them by their Twitter names – an essential part of creating a speaking career is to have a strong consistent identity in social media!)

By Leave a Comment

Participatory Medicine and e-Patient hit the media in Maine: Morning TV and newspaper

I was in Maine Wednesday night, speaking to the annual meeting of the excellent (and very E) Maine Quality Counts, which is one of the sixteen Aligning Forces for Quality (@AligningForces) communities, a project of the Robert Wood Johnson Foundation’s Pioneer Portfolio. Aside from the dinner speech, I also met with their awesome very-E consumer advisory board – I swear, I’ve never seen a more savvy, wised-up, activated bunch of patients. It was terrific.

As part of the trip they arranged some media coverage for the cause. First, here’s an unrehearsed four minute chat this morning on Good Day Maine: (ten second commercial at the start)

I love that we’re getting to the point where it’s possible to discuss “e-patient” and participatory medicine in a way that comes across gracefully!

Then I visited the Bangor Daily News, for a lengthy interview and some snapshots. Health reporter Jackie Farwell had really done her homework – we spent no time on “so tell me your story”; instead we dove right into what this all means. The article’s here, Then, photographer Troy Bennett shot another quickie video, in addition to the usual photo. Well done, both of you!

Takin’ it to the streets!

By 20 Comments

Crowdsource my keynote! “Gimme My Damn Data, three years on”

Three years ago this month, at the Medicine 2.0 Congress in Toronto (photo at right), I gave my first keynote: “Gimme My Damn Data.” As I detailed recently, it was the beginning of a movement. And now, this weekend at the same event (at Harvard Medical School), I’ve been invited to give the closing keynote:

“Gimme My Damn Data, Three Years On: What’s Changed, What Hasn’t, and What Still Needs To.”

I have my own thoughts, but I’m sure you do too. What do you think? One big thing that’s changed is that this is a movement with many voices – I’d love to include yours. Leave a suggestion in a comment here, and if I use it, I’ll credit you!

For starters on What’s Changed:

  • ARRA / HITECH: The US stimulus bill, with its billions for adoption of health IT, has rolled out and is causing change.
  • Meaningful Use: in the US, we now have regulations that are tugging
  • The OpenNotes project has completed; its results will be announced next month. (A massive study to document what does and doesn’t happen if patients get access to their doctors’ actual visit notes.)

Starter on What Hasn’t and What Still Needs To:

  • It’s not a reality yet. Many providers still resist.
  • You and I don’t legally own our data. If we did, they couldn’t keep it from us.
  • Most of us don’t have good patient portals
  • It’s practically impossible  to pull together data from all sources into a single record.

What else??  I know there are tons more – help me!

Background information

[Read more…]