e-Patient Dave

September 11, 2013 By e-Patient Dave 1 Comment

You have some BIG new rights under HIPAA. Explained in a clear video from ONC

For easy sharing with providers and friends, this post is available at the short URL dave.pt/NewHIPAArights

Last month in “You can ask to see or get a copy of your medical record & other health information” we reviewed an important document [click the image at right] from the Office for Civil Rights that every e-patient should know about – and sometimes carry a printed copy, because many providers don’t know about it. That post’s headline tells the story: you can ask.

Now, as part of the continuing rollout of health reform in the age of “e,” there’s a new video from ONC, the people in HHS who run health IT policy. Here’s a text summary of the items in the video above.
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September 10, 2013 By e-Patient Dave Leave a Comment

Do you know someone who responded inspiringly after a medical error? Nominate them.

Nominations close Friday for this inspiring award. I’ve twice attended their award event and both times I’ve just been touched and moved by how good people have responded to a real setback – a medical “adverse event,” as they’re called, so euphemistically.

Linda Kenney almost died from an all-too-possible accident … a local anesthetic got into a blood vessel and stopped her heart; she woke up three days later in an ICU. Out of that experience – and the healing that eventually happened with both her family and the involved anesthesiologist – she started MITSS – the Medically Induced Trauma Support Services.

She wouldn’t call herself a hero, but I will … do you know someone who’s responded to such an event by Supporting Healing and Restoring Hope? That’s what the MITSS HOPE award is about. The process isn’t hard – you just write a 500-1000 word essay, and fill in a form as described here.

Please participate. Here’s a bit more, from the award’s home page:

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September 9, 2013 By e-Patient Dave 34 Comments

Ratty boxers: what it means to really, truly have no money

Glossary for non-English readers: “ratty” = poor condition; boxers = boxer shorts (Wikipedia).

This is an update on a post from three years ago about the business of patient engagement – the challenges of starting a business without funding or a proven business model. As regular readers know, after years of struggle I turned an important corner (my business reached break-even), and looking back, I want to explain something.

Back then my underwear included ratty boxer shorts. (I took a picture but you don’t want to see it.) In the face of my other bills, I couldn’t afford to buy new underwear. Yet time after time people invited me to come…

speak for free
advise their company for free on the phone
attend policy meetings for free.

Some even asked me to pay my own travel costs. See the recent post A turning point for patient voices, which details the irony in telling someone their voice is valuable but then saying it’s not worth spending a cent.

(Others did offer support, even for advice by phone. Early examples who come to mind include Emmi Solutions and InfoSurge – importantly, both are patient education companies!)

Like many experienced patients, back then I had plenty to say but I didn’t have any money. To attend an event and contribute value, I needed funding . I was the same person I am today – I just didn’t have any money. And I couldn’t spend money I didn’t have – I was being responsible.

How ironic that being responsible would squelch a patient.

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September 4, 2013 By e-Patient Dave Leave a Comment

The OpenNotes project goes wide: a million patients and families enabled by access to information!

On the e-patients.net blog, I just posted an important update about the OpenNotes project, which is letting patients see what their doctors wrote – online. Look: over a million patients and families are getting access now.

Please click this screen capture (or click here) to go read the post. And ask your doctors and hospitals to get with the program! If you don’t ask, they won’t know you want it.:-)

September 2, 2013 By e-Patient Dave 19 Comments

Speaker Academy #11: Introducing ourselves (workshop begins!)

At six weeks, my granddaughter’s already practicing her confident introductory handshake :-) (Photo: Jon L’Ecuyer. All rights reserved.)

As this series has progressed and I’ve chatted with some of you, I’ve thought we really ought to get to know each other. So, this post is a “lecture,” and the exercise will be to discuss in the comments. To participate:

If you have an “about” page on your site, or any other description online, link to it in a comment below.
If you don’t have one yet, you will. :-) So git to work: draft something in a comment, and we’ll all offer suggestions.

Don’t hold back thinking your current status isn’t good enough – that’s why you’re in school! Empowered people act, knowing they may need to learn and adjust.

Some tips on your intro as a conference speaker:

The tone can be professional-sounding, academic-sounding, casual, playful, edgy, confrontational – it’s your first impression on people. Be yourself, as you want them to think of you.
Start with the single most important thing you want them to know. At first you only have one moment of their attention.
- It’s no tragedy if they read it and say “Nope”! You’re not trying to make everyone like you – you’re trying to find a good fit.
Then you can flesh it out with more info, if there’s reason to.

Here’s an important tip my dad (VP of Sales at a division of 3M) taught me about resumes:
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August 31, 2013 By e-Patient Dave 4 Comments

Speaker Academy #10: Take off your stupid badge.

Don’t do this. Just don’t.

Not only do you look dopey in person, you look permanently dopey on video.

This was a pretty good talk, but look. This is the equivalent of having spinach in your teeth and not knowing it. So this will never be a high-value video.

Before you take the stage, take off your stupid badge!

Next in the series: #11: Introducing ourselves (workshop begins!)