e-Patient Dave

Power to the Patient!

By 2 Comments

Prize-winning Consumer Reports app seeks study participants: Hip or Knee Replacement

For U.S. residents – 

I spoke last month at a health price transparency conference in Washington, sponsored in part by Robert Wood Johnson Foundation. In a side session we saw presentations by the winners of the Health 2.0 Developer Challenge Consumer Reports logofor shopping tools. Consumer Reports won first place for shopping apps for their Hospital Advisor: Hip & Knee app. (The link has their demo video.) It’s a fabulous tool for comparing prices and quality for hip and knee replacements.

Now they’re expanding the data behind the app, so they want information from us. Team member Chris Baily sent this request – feel free to share widely:
_________________

[Read more…]

By 8 Comments

e-Patient request: adverse events from Xarelto?

Latest in a series of e-patient requests.

A good friend overseas writes that due to a fracture and other conditions she’s on Xarelto, a drug to prevent blood clots. (Here’s the drug’s page from the EMA, “the European FDA.”) The drug is causing serious issues with her blood and liver enzyme numbers and may be discontinued next week. Meanwhile she seeks e-patient advice in addition to everything she’s already found.

Her questions:

Are there any reports of adverse events from patients on the drug?

Is there anywhere online to discuss the drug with patients who are on it?

Any other suggestions?

Thanks!

(Via e-patient buddy @Stales, here also is the FDA’s info PDF on the drug, and the drug’s page from PubMed Health.)

 

By 7 Comments

Site’s links and menus are temporarily broken. (Thanks, Bluehost.) What to do.

Update two hours later: this is fixed. See the resolution and further thoughts in the comments.

This seems to me to be a great example of a process that wasn’t designed reliably, so all kinds of things could be done per the plan yet the result still didn’t work. I’d like to work with them to define a better process. (We need to have the same approach to system failures in healthcare!)
_________

By the end of this weekend things should be back to normal, but right now links to this site’s pages are broken.  The site is mangled due to a bad migration of my site to web hosting company BlueHost.com. (I’m naming them because every step I took was as directed by them, and because their techs assured me this wouldn’t happen.)

Specifically, the home page URL www.epatientdave.com is working, but the links to pages within the site are broken. So, for instance:
[Read more…]

By 5 Comments

e-Patient request: business traveler with diabetes seeks virtual health coach

Latest in a series of e-patient requests.

Last year in an airport I bumped into a  long-ago co-worker. In light of the work I do in my travels it was stunning, because he said he’d been diagnosed with diabetes and he’d felt so alone … he’d never met another person with diabetes.

It stunned me because I’ve long said that diabetes patients are the archtypical e-patients – they have to be engaged in their care, and diabetes has long been the disease with the biggest online communities. But his providers had never mentioned connecting with others.

We parted, and he went back and did so. Today we’re Facebook friends, and now he writes this call for assistance. Kerri, Manny, Amy, Ginger, any of you, what say you? Thanks!

(As I read his notes below about all the things he’s done to be proactive, it’s deeply moving. He’s made a lot of progress but with some embarrassment he’s owning up to what’s not working; still committed to his goal, he’s reaching out for more support. Ain’t that engaged, empowered and responsible??)

So please, DOC (diabetes online community), dish up some advice.  I’ll link this discussion on my Patient Communities page for future reference.
______________

By 4 Comments

New wheelchair icon nails the shift to “empowered and engaged”

Brian Glenney and Sara Hendren holding the new wheelchair sign in front of the old one
Photo by John Tlumacki, Boston Globe staff. Caption: “Brian Glenney and Sara Hendren have begun a campaign to change the design of wheelchair signs.”

My Twitter feed was abuzz yesterday with last week’s Boston Globe article by Billy Baker, Wheelchair icon revamped by guerrilla art project, and boy am I glad: aside from being a great story, it sums up everything I’ve been trying to explain about the shift to patient engagement.

I’ve spent time in a wheelchair, I used to teach in a school for handicapped kids, and my wife sometimes uses a chair, especially in airports. The usual view of the chair-bound person is as limited, confined, less able. In some ways that’s valid, but too often it’s overdone. Look at this photo, and compare the new icon with the one in the back:

  • Old: Occupant is sitting, being wheeled around.
    New: Occupant is in power, leaning forward, doing as much as s/he can. (Their site says “Here the person is the ‘driver’ or decision maker about her mobility.”)
  • Old: Occupant seems to be part of the chair.
    New (per the Globe): “the human [is] distinct from the chair, in an active position, with a feeling of forward movement.”

I’ll extend the metaphor: [Read more…]

By 5 Comments

The Lost Speech: “Blue Button Plus” developer conference, New York, July 22

Screen grab of shot from YouTube of my talk
Click to view the video on YouTube

This is a quickie post – at long last the video of one of my favorite speeches ever has been unearthed. It was in July in New York, and somehow it got lost, and arrived in my inbox today. (Well, actually, they posted it three months ago but forgot to tell me!)

All’s well that ends well. I just want your help in a BIG push to spread the word about this!  Time’s a-wasting!

The event was a conference conducted by our Department of Health & Human Services to educate and encourage software developers about the “Blue Button Plus” initiative. Because I’m on vacation I’ll leave it to you to google that phrase, which is really important for the future of health IT, and not just in America; this innovation initiative will change what patients and families are capable of.

Unfortunately the video crew that day apparently didn’t realize I was showing slides that might also be part of the presentation (d’oh!) so they only took video of me. So the slides are on a separate site, Slideboom, embedded below, and they’re not synchronized to the video – if you want to see both you’ll need two monitors (ugh) and you’ll need to guess at when to click:
[Read more…]