e-Patient Dave

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Quick year-end wrap – and winter retreat.

Christmas wreath HeatherKnitz

Through Monday, January 11 I’ll be on reduced availability, for a period of “retreat and think.” It’s not a full-bore vacation; I’ll be reading and writing (and blogging), but I won’t be responding to most emails.

I can still be reached for anything time-sensitive and I will still monitor contacts from media and potential clients, per the Contact page.

Year-end wrap:

Here’s a list of my favorites on this site from 2015.  I’ll repeat something I said in August:
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e-Patient Request: software (or anything) to organize one’s records?

This series of requests is usually about finding a good online patient group, but what the heck, why not this?

A heart patient named Chris from Long Island contacted me looking for something I’ve sought myself: a tool for organizing one’s records. I hope everyone who helped me with that last summer will be tolerant of my weak memory if I forget to mention theirs – my needs ended suddenly mid-search and I never got around to finishing the hunt. So here we are. This time we’ll record it in the comments!

Chris has hypertrophic cardiomyopathy, the enlarged heart-muscle condition that Hugo Campos has made famous. He’s never heard of Hugo, nor has he heard of the AliveCor, but he sure shares Hugo’s understandable desire to be responsible for his own well-being! That’s what we call being an empowered, engaged “e-patient.”

Here’s what he sent:

… I have been an advocate for myself insofar as I am able to try and garner information and ‘house’ my medical records for easier, access, transmittal and peace of mind. I fervently believe that this is a requisite portion of partnering with a doctor or medical teams to handle issues and provide solace.

As I had mentioned, I was diagnosed with a cardiac issue and being adopted, I never knew of my medical history. I have looked for years to find websites, apps and e-devices to scan, store, and file my medical history into one accessible hub. I simply cannot find one specific rating system or even helpful links that would provide more than a cursory glance into this technological world.

Here are the tools I know of, in alphabetical order, from past discussions:

Thoughts, all??  I know this field is advancing faster than I’ve been able to pay attention to it. Help!

 

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e-Patient request: resolve PTSD from early medical trauma?

Brenda kayaking for the first time
Brenda kayaking for the first time
Brenda Denzler with grandson
Brenda hamming it up with her grandson

Next in a series of very informal e-patient request blog posts, which feed the equally informal patient communities page. If you haven’t browsed the series you might find it interesting to see the kind of information people exchange for some conditions … and for others, we got nothing. Welcome to the internet!

This request is from e-patient Brenda Denzler, shown here in (characteristically) two comic settings. She’s seeking help for an issue that’s been with her for her whole life. 

The doctor she mentions is Ryan Madanick @RyanMadanickMD, whom I’ve met on the conference circuit (particularly at Mayo social media) and online!

She sent this email. (In a comment I brought up EMDR as a trauma treatment, but I don’t know a lot, and besides, I’d like to hear more about other child medical traumas.)

My gastroenterologist was impressed with my preparation as a patient of his and referred me to your site.  I’m not sure what it means to be your “current or potential client” – but am taking a chance by contacting you this way, anyway. [I don’t take “clients.”]

In late 1958 and early 1959, I had two medical situations arise.  I was 5 years old.  [Read more…]

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August: “retreat and think”

Cover of Structure of Scientific Revolutions 50th anniversary edition

For the month of August I’ll be mostly offline, for a period of “retreat and think.” It’s not a full-bore vacation; I can still be reached for anything time-sensitive (see my Contact page) but I’ll be less active online.

This year has already been full of change – Ginny’s knee replacements, Visiting Professor at Mayo, the first Patient Engagement Fellowship, new publications, and most of all, rethinking what “patient” means (and could mean), per the book that made paradigms famous: The Structure of Scientific Revolutions (right). Our movement is gaining traction, which means a change agent needs to rethink. This month is good for that (I’m only traveling to one event), so I’m going to dial back the dialog.

September will be amazing.

One reason to retreat now is that on August 28 the calendar flips from empty to packed.

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Writings and upcoming events – July 2015

Like last month, here’s this month’s update on travels, events, and articles (including a first for me!).

In my travels if you’re in the area and want to connect, contact me.

Writings:

  • Do you use online symptom checkers? Go for it but be wise: Last Friday I was interviewed by the Boston Globe (see below) to comment on a new BMJ article. It was such a stimulating topic I wrote a much-mentioned post about it on e-patients.net, and I hope to be writing more

Media mentions:
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