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

“A young mom’s musings” blog: “How I lost my fear of Universal Health Care”

One of the great things about Twitter is that although you can’t possibly keep an eye on everything, every now and then something flies past that you never would have seen otherwise.

This weekend this extraordinary post caught my eye: How I lost my fear of Universal Health Care. Please read this earnest young mom’s experience. It starts:

When I moved to Canada in 2008, I was a die-hard conservative Republican. So when I found out that we were going to be covered by Canada’s Universal Health Care, I was somewhat disgusted. This meant we couldn’t choose our own health coverage, or even opt out if we wanted to.

I’ve always preferred to stay out of political spitting contests (to put it mildly), because I can’t function when wild accusations fly around. Heck, everything I’ve seen says most people don’t actually know what’s in the health reform law. And besides, what I’m about is patient engagement, not politics. I believe people should be actively engaged and responsible in health and care, and that society should enable that, not block it.

So what I need is real-world examples of how things work out when people try to get care and try to be responsible for their families’ health.

And this young mother relates what she found when she moved to the land of universal care.  Partway through the post, she writes – [Read more…]

By 8 Comments

Information, at the point where it’s needed, can save a life

At the Joseph H. Kanter Family Foundation’s Learning Health System Summit, at the National Press Club in Washington last month, I was asked to deliver a dinner speech about the power of information to improve the effectiveness of medical care – not just for patients, but for every doctor and nurse at the bedside. Because everyone performs better when they’re better informed.

Important: This was my first major speech that’s not about patient engagement per se – it’s about the value of information, to everyone engaged in any aspect of health or care.

Clinicians, policy makers, everyone can only perform at the top of their training if the relevant information is available where and when it’s needed. That’s IT, baby – information technology – but it’s also culture. We need the will to bring the info to the point of care – and to put an end to information that dies on the vine, unused. We can do it!

If you can’t see the video, click here to view it directly on Vimeo.

About the event:
[Read more…]

By 9 Comments

“Give em Mom’s Damn Data”: big event on “putting the IT in care transitions”

There’s a seven hour event tomorrow (8-3, ET) that will be live, webcast, tweeted and discussed on Google+. It’s about information transfer during transitions of care. It’s important. Here’s why.

Read Brian Ahier’s post about it on Government Health IT.
Register here.

Anyone with half a brain knows that the right information makes it easier to do the job right. Unfortunately, to a large extent health providers haven’t done anything about getting information into other people’s hands. And harm can result.

Case in point: on July 14 my mom had a total hip replacement in Maryland. My two super-sisters were all over the case, and everything went well. But her discharge to rehab failed. Why? Because those two facilities don’t have HIE: Health Information Exchange. So the rehab place had to transcribe Mom’s information. Manually. As in, retype everything.

As in, typos.

As in, hyperthyroid got mixed up with hypothyroid.

[Read more…]

By 4 Comments

Interview and Boot Camp with Lucien Engelen at REshape Academy

Updated October 10: Added transcript of the video, at bottom.

On Tuesday morning, my Dutch colleague Lucien Engelen (Twitter @LucienEngelen) took me to the production studio in the attic of his little office and we shot this interview. I had no idea what questions he’d ask, and this was my day for jetlag confusion after a Saturday night redeye from the US. He edited it down, and boom, instant TV show! I’ll explain the context in a moment, but first, the interview (13:37):

e-Patient Boot Camp poster (click for PDF)

Here’s a companion article (in Dutch) in Thursday’s “Skipr” (Dutch health newspaper) about REshape, including this video and an audio interview (also in Dutch) with Lucien.

The setting: Radboud REshape Center

[Read more…]

By 1 Comment

“I beat cancer so I could dance with my daughter at her wedding”

I’m thrilled that our government has put up a great new website, www.HealthIT.gov, with tons of info about electronic medical records, both for providers (docs & nurses) and for patients & families. I’m even more thrilled that they had the good sense to drive home the impact with five real patient stories – some good, some bad – where medical records or the lack of them) made a difference.

And I’m REALLY thrilled that one of them is about my daughter and me. :–)  Click the picture to go to the site.

So much of health IT discussion is about the geeky “CIO” (chief information officer) stuff, and loses track of what it’s all about: people’s lives. Congratulations and thanks to the good people at that part of our Department of Health & Human Services – Josh Seidman, Claudia Williams, Lygeia Ricciardi are the three I know best – for this TERRIFIC campaign: “Putting the ‘I’ in Health IT.” Yes.