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“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
Patient Empowerment through Social Media
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e-Patients.net founder Tom Ferguson MD 1944-2006
Equipped Engaged Empowered Enabled”
“Doc Tom” Ferguson said “e-Patients are
Agenda
1. Defining empowerment
2. A short version of my cancer story
3. Fundamental principles of information in medicine today
4. How the internet has changed the flow of information
5. Googling is a sign of an engaged patient. Do not stop it – improve it!
1. Definition: “empowerment”
Is it real and useful, or is it just a
“warm and fuzzy” idea?
Empowerment “Increasing the capacity ���of individuals or groups
to make choices [about what they want]
and to transform those choices ���into desired actions & outcomes”
World Bank, 2002
Information empowers
It increases people’s ability
to make choices and take
effective action.
If you suppress information it disempowers the
people who could use it.
Social media is empowering.
2. A short version of my own cancer story
The Incidental Finding Routine shoulder x-ray, Jan. 2, 2007
“Your shoulder will be fine … but there’s something in your lung”
Classic Stage IV, Grade 4
Renal Cell Carcinoma
Metastases all through the body
Median Survival: 24 weeks
E-Patient Activity 2: “My doctor prescribed ACOR”
(Community of my patient peers)
Surgery & Interleukin worked. Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
3. Fundamental principles of information
in medicine today 1. X
2. X
3. A short version of my cancer story
4. How the internet has changed the flow of information
5. Googling is a sign of an engaged patient. Do not stop it – improve it!
The most fundamental:
The best in medicine requires
the best information at the point of need.
No doctor, nurse, or patient
can possibly contribute to the best possible treatment
if they don’t have the best information.
1. There is far too much for anyone to know all the information
that could help.
Institute of Medicine, 2012: >700,000 medical articles/year
(2,000 per day!)
2. New information does not spread
to all professionals instantly.
It takes years.
Physician adoption of new practices years after discovery Institute of Medicine, 2000 From A. Balas, Institute of Medicine, in Yearbook of Medical Informatics 2000
Flu vaccine, year 32: 55% doing it, 45% still not
Beta blockers, year 18: 62% doing it, 38% still not
Diabetic foot care, year 7: 20% doing it, 80% still not
Cholesterol, year 16: 65% doing it, 35% still not
Creative Commons Attribution / Share-Alike May be distributed with this license included
Patients can be useful “information hunters.”
3. Not all information in medical journals
is reliable.
After 30 years of practicing peer review and 15 years of studying it experimentally, I’m unconvinced of its value.
Evidence on the upside of peer review is sparse, whereas evidence on the downside is abundant.
Most of what appears in peer reviewed journals is scientifically weak.
Richard Smith, 25 year editor of the British Medical Journal, 2009
4. A lot of useful information exists that will never be in the literature.
It’s worth finding.
Online patients told me:
• This is an uncommon disease – get to a hospital that does a lot of cases
• There’s no cure, but HDIL-2 sometimes works. – When it does, about half the time it’s permanent – The side effects are severe.
• Don’t let them give you anything else first
• Here are four doctors in your area who do it
None of this is in the literature, even today
4. The internet has changed the flow of
information
Transformation of Knowledge Access
Slide by @ePatientDave 2015 based on Engelen & Derksen 2010 at
Transformation of Knowledge Access
Slide by @ePatientDave 2015 based on Engelen & Derksen 2010 at
Transformation of Knowledge Access
Slide by @ePatientDave 2015 based on Engelen & Derksen 2010 at
Transformation of Knowledge Access
Social media act as “Information capillaries”
Slide by @ePatientDave 2015 based on Engelen & Derksen 2010 at
Transformation of Knowledge Access
Social media act as “Information capillaries”
Slide by @ePatientDave 2015 based on Engelen & Derksen 2010 at
Closed system Open network
5. Googling is a sign of an engaged patient.
Do not stop it – improve it!
Teach it!
Improve patients’ skills as information seekers.
Nurses can be great at this. Community health workers,
too.
Predictably, the establishment, feeling threatened,
sometimes strikes back.
The Belgian government spends taxpayer money on
Google ads saying “Don’t google it”
Post on LinkedIn: dave.pt/belgiangoogle2
The ad videos: dave.pt/belgiangoogle3 dave.pt/belgiangoogle4
When reality changes, ignoring it
can be tragic.
Reported June 2015
Reported June 2015
Summary 1. Empowerment: increasing people’s abilities to
make choices and act.
2. Information is empowering.
3. Social media provides “information capillaries”
4. The best care requires the best information
5. Information changes very rapidly today. This gives medicine new challenges.
6. Googling is a sign of an engaged patient. Don’t stop it – improve it!
“e-Patient Dave” deBronkart Twitter: @ePatientDave facebook.com/ePatientDave LinkedIn.com/in/ePatientDave [email protected]
Patient Empowerment through Social Media
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