e-Patient Dave

Power to the Patient!

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A MOOC about social media in healthcare: opportunities & challenges

FutureLearn Social Media in Healthcare course screen captureThis post is about a specific course, the concept behind its technology, and what it means for the future of learning. For people who know about MOOCs this will be old news; for people who don’t, I hope this will be enlightening. It’s a big change.

For years I’ve heard about MOOCs – Massive Open Online Courses. As Wikipedia says, “…an online course aimed at unlimited participation and open access via the web.” I first wrote about the idea three weeks ago, in Reusable building blocks: a speech by video Q&A, but I’d never touched a MOOC, until recent months when I got involved with one.

It’s a free course (that’s the “open” part) that ended last month, and will start again in two weeks: Social Media in Healthcare. Specifics:
[Read more…]

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The best of medicine: my wife gets the new “muscle sparing” knee replacement

Ginny at Half Moon restaurantOn Facebook Friday I posted this picture of my wife Ginny, saying “There is an astounding story behind this photo. Details Monday.” Well, it’s Monday.

As you read this, bear in mind, your mileage may vary – everyone’s different, this wouldn’t be appropriate for everyone, and Ginny herself played a big part in it.

The astounding story:

In this photo we were out to dinner, nine days after Ginny had both knees replaced. She walked into the restaurant using only canes – no walker, no wheelchair. The surgeon is Howard Luks, the social media orthopedist (@HJLuks), whom I met on Twitter in 2009, and the surgical approach he used is called muscle-sparing (or “quad-sparing”) minimally invasive surgery, part of a larger package of methods he uses, described below. Bottom line:

  • None of her muscles were cut
  • She had no transfusions
  • She has not needed to have any of her dressings changed
  • She left the hospital on day 3, was discharged from rehab 8 days after surgery, and today on day 12 we’re returning to New Hampshire, to continue outpatient physical therapy from home.

Of course she’s still on pain meds, tapering down, and her endurance is of course limited. But she is basically functional and able to live on her own if she needed to, or rehab wouldn’t have discharged her.

Here’s a video of her walking around the hospital floor – 500’ – with a walker for balance (not leaning on it), less than 48 hours after leaving the O.R., and on the right, at rehab, walking with just canes, a week after the surgery:

She was discharged from rehab after demonstrating (among other things) that she can safely walk up and down a full flight of stairs … six days after the surgery. She can get herself into and out of bed, into and out of our Prius, etc. She’s not speedy at any of it but she’s functioning reliably.

(Of course I have Ginny’s permission to talk about all this. Also, I’m an e-tool geek and she’s not, so I’m the one using the tools discussed here.)

Again, everyone, please read this: your mileage may vary – everyone’s different, this wouldn’t be appropriate for everyone, and Ginny herself played a big part in it.

The part Ginny played, as an activated, engaged patient

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The diverse nature of patient communities: a prostate cancer patient’s experience

During my illness, my patient community at ACOR.org (now SmartPatients.com) played an important role, but it’s not easy to find a good community for most diseases. (For instance, the most common cancer in the world is skin cancer, and I haven’t found a single smart, active community for its patients.) So several years ago I started a Patient Communities page on this site, to collect whatever information we can find.  Maybe someday we can get some funding or a volunteer team to organize it better, but for now (as patients always do) we’ll make do with what we have!

Last week in Vermont, at the VITL health IT conference, after a workshop session, audience member Damon Lease said he’s found several different communities for prostate cancer, and found that each has its own personality. In my view that’s no surprise – people are different, and there’s no standardized way for communities to form and grow. Consider the diverse nature of the groups Damon found, on this one disease. From his email: [Read more…]

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“Patients + Providers + Technology = Engagement” (Guest post by Patti Brennan)

Patti Brennan
Patricia Flatley Brennan, PhD, RN, PhD – University of Wisconsin Madison, School of Engineering

This is a real pleasure – a guest post by Patti Brennan (@PattiFBrennan), one of the people I admire most in the world of improving healthcare through patient engagement. I first met her through Project HealthDesign, one of the best programs sponsored by the Robert Wood Johnson Foundation: “Rethinking the Power and Potential of Personal Health Records.” I’ve also shared a panel or two with her at industry events – not nearly enough to suit me, though. :-)

Last year Project HealthDesign completed. One of its key subject areas was “ODLs” – observations of daily living. Here she explains the idea and lists some exemplary work she’s seen.

This guest post (I added some boldfacing) is long overdue – I’m just too busy for my own good sometimes! Thanks for this honor, Patti.

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Patients + Providers + Technology = Engagement

There’s a growing group of patient advocates, people like Hugo Campos or ‘our own’ Dave deBronkart (e-Patient Dave), who are calling for patients to be active and equal partners in their health—and that’s a goal that as a nurse I wholeheartedly support. At Project HealthDesign, we have worked to encourage two-way conversations between patients and clinicians, with both parties held in equal status. Clinicians are the trained experts in health care, but patients are the experts in their own lives and their own bodies. We believe that when both parties work together, more can be done to improve health care than either can do alone.

The key to forging these relationships and creating successful partnerships between patients and providers is technology.

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“You can ask to see or get a copy of your medical record & other health information”

Updates:

  • Feb 1, 2017: fixed some expired links.
  • July 19, 2015:
    • This has turned into by far the most-viewed and most-commented post ever on this site. This year alone it’s averaging 1,000 views a month.
    • A few weeks ago the HIPAA authority Deven McGraw, who’s mentioned three times below, was put in charge of this issue at the Office for Civil Rights. Hooray!
    • Last Friday (7/17/15) the New York Times ran an important related article, Hipaa’s Use as Code of Silence Often Misinterprets the Law
  • Sept 12, 2013: See new section on Resources for Action at bottom.
  • July 20, 2013: see attorney David Harlow’s comment below about a Federal exception for lab data, though state law may still protect you.

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OCR's HIPAA Rights flyer (PDF)
OCR’s HIPAA Rights flyer (click to download PDF, 456k)

I’ve been infuriated recently by two “gimme my DaM* data” episodes where providers told me “No – you can’t have the report. We only send it to the doctor.”

That’s illegal.
It’s a Federal civil rights violation.

I am legally entitled to my medical record,
and you are entitled to yours.

Refusing to give it to you
subjects them to
Federal civil rights penalties.

Yet so many doctors and hospitals simply don’t know this. In my case, two independent shops recently said no – a lab and a radiologist – leaving me powerless. Well, I don’t take well to being powerless. So I acted. On Twitter today I said:

This feels ironic: a radiology shop is refusing to give me the radiologist report. Anyone have a link to “Docs MUST give pts their data”?

Within minutes I had responses from my excellent peeps [Read more…]

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Wanted: an “issue tracker / diary” tool

1799 gout illustration by James Gillray, public domain, Wikimedia
1799 gout illustration by James Gillray (Wikimedia) (Click for NY Times gout article where I found this)

This is a rough software idea that anyone is welcome to take and make a product out of, if it doesn’t exist. Or maybe someone will say, “JEEZE, Dave, I’ve been trying to tell you for years that this is what we DO!”

Any vendor with such a product is welcome to say so, commercially with links, in the comments.

I want an easy tool – ideally an app with matching website – that helps me keep track of recurring symptoms and what I’m doing about them.

At 63, I have a number of things going on that probably won’t amount to anything, but when conspicuous out-of-the-ordinary symptoms persist, I’d like to keep track of them. At the moment it’s my feet: in March I started having intermittent pain that comes and goes. (See An encounter with the Swiss medical system.) Back then it appeared to perhaps be gout (it felt like that picture.) But now it seems not to be.

Pain gets your attention, and quickly trains you to want to manage it. Last week a mild episode started, and this time it hasn’t cleared up by itself. Then the other morning I woke up with swelling and burning pain. It was so bad that I wondered if I have a recurrence of my cancer, in the form of bone mets (metastases).

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