e-Patient Dave

Power to the Patient!

  • Home
  • Blog
  • Speaker
    • Corporate & associations
    • Healthcare
    • Videos
    • Testimonials
  • Author
  • Advisor
  • Schedule
  • Media
    • Recent coverage
    • News coverage 2010-2014
    • Book mentions
    • Press resources
  • About
    • About Dave
    • Boards & Awards
  • Resources
    • Patient Communities
    • For Patients
    • For Providers
    • Speaker Academy
  • Contact

July 30, 2013 By e-Patient Dave 26 Comments

A turning point for patient voices

Patients Included badge

In February I announced that after three years of struggle I’d reached breakeven. This has made new things possible – for instance, an office outside the home. It also makes possible a new policy for pricing my speeches.

This is a significant moment, so I’m breaking this into two posts: today the background, tomorrow the new policy.

Prologue

It’s been an uphill climb. Like many before me I’ve had many requests to donate my time: “We’d love to have you speak, but we don’t have any money” (or hardly any).

I’ve had to insist on being businesslike so I wouldn’t go out of business. This led to some interesting discussions, e.g. my most-commented post ever, on this site: “Should consumers be regulated?”

I want to do everything I can to foster the growth of this movement, both by changing the business climate and by helping others step in. So there have been issues to think about and manage, both on the business dimension and in the progress of the “movement,” if I can call it that.

[Read more…]

Filed Under: Business of Patient Engagement, Events, public speaking, Speaker Academy 26 Comments

July 19, 2013 By e-Patient Dave 131 Comments

“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.

________

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…]

Filed Under: e-patient resources, Government, Health data, Health policy, Participatory Medicine 131 Comments

July 19, 2013 By e-Patient Dave 5 Comments

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).

[Read more…]

Filed Under: e-patient resources, Patient-centered tech 5 Comments

July 13, 2013 By e-Patient Dave 15 Comments

Speaker Academy #4: Cognitive dissonance

Aesop's Fox and Grapes from WikipediaNext in the series Speaker Academy, which started here.

After a day off for Trevor Torres’s Q&A on selling, we resume with the third of Randi Oster’s takeaways from our phone conversation.

Randi’s an experienced business person with speaking experience, so her #3 observation is not necessarily what a newbie would prioritize. But it’s an important point, as you’ll see. I’ve heavily edited Randi’s notes. Randi, thank you for your work; your words per se aren’t here, but this lesson exists because of your work:

Competent patients can cause cognitive dissonance. The speaker must deal with it.

“Cognitive dissonance” is a geeky psychological term; all you really need to know is this:

  • [Read more…]

Filed Under: Speaker Academy 15 Comments

July 13, 2013 By e-Patient Dave Leave a Comment

“Healthcare Matters” radio – listen live and call in, 11 am Sunday

WTIC Radio logo
Click to listen live

I just learned that the Hartford radio program where I’ll appear Sunday morning is available as “listen live” online. Here’s a quick note from yesterday’s announcement email:

On the next Health Care Matters: Letting patients help!

Join HealthCare Matters hosts Elliot Joseph and Rebecca Stewart, along with special guest “e-Patient Dave.” Dave deBronkart is a blogger, international speaker and stage four cancer survivor who doubles as an expert in patient engagement.

How do we engage patients more in their care? And how do we make sure it’s helpful? Together, we will tackle the toughest topics – and your questions.

Join the conversation this Sunday at 11 am Eastern, on WTIC NewsTalk 1080. Or listen online.

OpenNotes logo Among other things we’ll be discussing the OpenNotes project, the year-long study in which patients got access to their doctors’ actual “visit notes” – the things they write in your medical record. As I’ve often blogged, counter to some fears, just about everyone involved loved it and didn’t want to quit. That’s important, because as we patients become increasingly responsible for carrying the ball in medicine, we gotta have the information.

Filed Under: Events Leave a Comment

July 11, 2013 By e-Patient Dave 10 Comments

Speaker Academy #3: Q&A on selling (Trevor Torres)

Trevor Torres
“Diabetes Evangelist” Trevor Torres

Lessons one and two were about understanding the world into which you want to speak, using text written by Randi Oster. We’ll continue with her tips #3-5 tomorrow but today I’ll step off that theme to answer some questions posed in a comment on Lesson 1 by Trevor Torres, a 17 year old hotshot “Diabetes Evangelist” who’s just started doing speeches. (See his first speech video* on his site.)

Here’s Trevor’s comment, with my answers embedded:
_________

The main thing I’m interested in right now is getting more speaking gigs! To that end, some questions:

[Read more…]

Filed Under: Speaker Academy 10 Comments

  • « Previous Page
  • 1
  • …
  • 67
  • 68
  • 69
  • 70
  • 71
  • …
  • 104
  • Next Page »

Click to learn about Antidote’s clinical trial search engine:

Subscribe by email

Thanks! Check your inbox or spam folder to confirm your subscription.

News coverage

Click to view article


     

    


     
     
 
   
     
     
    


Archives

Copyright © 2025 e-Patient Dave. All rights reserved.