Ten Years of e-Patient Emergence

epatient-daveBlog post by “e-Patient Dave” deBronkart (Introduction by Colin Hung)

Introduction

We are very honored this week to welcome a very special guest on #hcldr. Dave deBronkart aka @ePatientDave is a globally recognized advocate for patients. His own medical experience propelled him use his voice, his passion and his determination to spur change in the way healthcare is delivered.

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Dave deBronkart and Meredith Gould at #Cinderblocks3

I will never forget hearing Dave at HIMSS13 in New Orleans. He was a featured speaker in the Interoperability Showcase. When Dave stepped into the spotlight he spoke with such fervor about the need to free the data held within EHRs for the sake of patients I was instantly transfixed. Dave’s session really helped to put EHRs into context for me – yes they were great as repositories of information but given the difficult of getting data in and out of them were they really all they were cracked up to be?

I have had the privilege of meeting Dave at many healthcare conferences over the years. I especially enjoyed seeing him at this year’s #Cinderblocks3 event hosted by our mutual friend Regina Holliday @ReginaHolliday. Dave is one of the most open and forthright persons I know. Dave tells it like it is – no matter the situation or circumstance. His honesty and perspective is refreshing. I’m definitely looking forward to Dave being #hcldr guest this week.

Blog post

Here are my thoughts about ten years of e-patient emergence.

Ten years ago today, I was about to discover I was almost dead.  A lot has changed in my life since then… 🙂

Nine years ago today, Matthew Holt @boltyboy and Indu Subaiya MD MBA @bluetopaz were planning the first Health 2.0 event (Incidentally the week after this #hcldr tweetchat will be the 10th annual Health 2.0 conference, the first was in 2007 when I was sick). This year they are giving several patient activists “lifetime achievement” awards; final voting is live this week. Importantly Health 2.0 will be sponsoring travel expenses for the finalists to attend, even if they are not speaking at the event – just because they are patients.

Ten years ago this April the “progenitor” of the e-patient movement died – “Doc Tom” Ferguson (you can read more about him here). In the following year, his friends and followers finished the e-Patient White Paper, publishing it in April 2007 just as my treatment was starting. I learned about that paper from my doctor – Dr. Danny Sands @DrDannySands – in the last week of January 2008. After reading it I renamed myself e-Patient Dave and started blogging about it. It’s a great example of how a document can be the foundation for the birth of an “emerging” movement.

“Emergence” in the title of this blog is important to me because I don’t want to suggest this is the first time anyone ever did these things, because greats like Jessie Gruman and Julia Hallissy and all the patients in the White Paper had been doing it at least since the ’90s.  That’s why in 2011 my TED Talk started with the line “It’s an amazing thing that this is the Year of Patients Rising.”

The scientific principle of emergence is defined as when “larger things arise through interactions among smaller ones, such that the larger ones have properties the smaller ones don’t.”  (Colonies of ants and flocks of birds have behaviors the individuals don’t – and that’s exactly what’s happening as e-patients start to “swarm,” inducing new activities with each other and creating new patterns in healthcare that are here to stay.)

Or, as this site puts it, emergence is a new “order arising out of chaos,” forcing people to rethink things:

When something new arises, we have no simple, shorthand language for it. …. we stumble with words, images, and analogies to communicate this whiff in the air that we can barely smell. We know it exists because something does not fit easily into what we already know.

Join the #hcldr community on Tuesday September 20th at 8:30pm Eastern (for your local time click here) as we discuss the following e-patient related topics with special guest @ePatientDave:

  • T1 What impact have e-patients had on healthcare or on you personally?
  • T2 What stands in the way of widespread acceptance of e-patients (aka activated/informed patients)?
  • T3 What e-patients do you admire/follow and why?
  • T4 Where do you hope to see the e-patient/activated patient movement head over the next 2 years?

References

“How the e-patient community helped save my life: an essay by Dave deBronkart”, Dave deBronkart, The BMJ, 2 April 2013, http://www.bmj.com/content/346/bmj.f1990, accessed 16 September 2016

“e-Patient? Yes, e-Patient”, Dave deBronkart, patientdave blog, 28 January 2008, http://patientdave.blogspot.ca/2008/01/e-patient-yes-e-patient.html, accessed 16 September 2016

Image Credit

Dave deBronkart and Dr. Danny Sands – https://commons.wikimedia.org/wiki/File:Dr._Danny_Sands_with_his_patient_e-Patient_Dave_deBronkart.jpg

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One comment

  1. […] of ePatient Emergence.” The chat’s guest host was none other than ePatient Dave! Click here to read the blog post that went along with Tuesday night’s chat. By the way, the analytics […]

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