enable the rise of the participatory patient
TRANSCRIPT
“e-Patient Dave” deBronkartTwitter: @ePatientDave
facebook.com/ePatientDaveLinkedIn.com/in/[email protected]
The Rise of the Participatory Patient
Conflict of Interest Disclosure Statement
I have no financial interest or other relationships with the industry relative to the topics being discussed.
How I came to be here
• High tech marketing• Data geek; tech trends; automation
• 2007: Cancer discovery & recovery• 2008: E-Patient blogger• 2009: Public Speaker
• 2010: full time
• 2011: international
e-Patients.net founderTom Ferguson MD1944-2006
EquippedEngagedEmpoweredEnabled”
Doc Tom said,“e-Patients are
Me? An indicator of the future??
• Who’s getting online:– 1989: Me (CompuServe sysop)– 2009: 83% of US adults (Pew)
• Who’s romancing online:– 1999: I met my wife (Match.com)– 2009: One in eight weddings
in the U.S. met online– 2011: One in five couples
met online
2007: My “Incidental Finding”Routine shoulder x-ray, Jan. 2, 2007
“Yourshoulderwillbefine…butthere'ssomethinginyourlung”
Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company’s
web site
Median Survival:24 weeks
My patient peers 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
How can it be
that the most usefuland relevant and
up-to-the-minute information can exist outside of
traditional channels?
Donald Lindberg MDDirector of the National Library of Medicine
“If I read two journal articles every night, at the end of a year I’d be 400 years behind.” (2004)
2013: • 2,200 articles are published every day• Doctors must know 10,000 conditions• Patients can focus only on their own.
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
Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slideshows/Public%20Policy%20Conflict.ppt
Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slideshows/Public%20Policy%20Conflict.ppt
Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slideshows/Public%20Policy%20Conflict.ppt
Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slideshows/Public%20Policy%20Conflict.ppt
Citizen Participation
http://staff.maxwell.syr.edu/cgerard/Fundamentals%20of%20Conflict%20Resolution/Slideshows/Public%20Policy%20Conflict.ppt
Yes, the IOM itselfsays e-patients are an
essential part of tomorrow’s healthcare.
Patient-Clinician PartnershipsEngaged, empowered patients—A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.
“Patient perspectives”:The patient’s way of viewing the issuesPatient-Clinician Partnerships
Engaged, empowered patients—A learning health care system is anchored on patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.
• Who gets to saywhich outcomes matter?
• Is it reasonable to expect clinicians to know things they weren’t trained on?
• How do we solve that?
Dialysis: The flip side of “literacy”
“Conclusion/Implications: • “In spite of recommendations for shared decision-
making, many older patients treated with dialysis do not perceive initiating dialysis as a choice.
• “Initiating dialysis may contradict patients’ EOL preferences, and many desire greater information and more discussions with clinicians.”
Who gets to say whether THAT’s what’s important??
• What about MONTHS of suffering?• What about months of cost?• Who gets to say WHAT MATTERS?
“Quantified Self” #OpenAPS
Public Health conferenceSan Diego, May 18 (n=1)*59 (n=1)*59
October 18: *126
1871: Oliver Wendell Holmes
“Your patient has no more right to all the truth you know than he has to all the medicine in your saddle-bags. He should get only just so much as is good for him.”
Bellevue graduation speech
Participatory Takeawaysfor the Arriving Future: 1/3
• We now understand what “empowerment” and “engagement” mean. They make sense now.
• This gives us a firm place to push fromin designing sensible interventions and policies
• The primary limiting factor is culture change
Participatory Takeawaysfor the Arriving Future: 2/3
• Information can be empowering and enabling– It can … but nothing’s automatic.
• Information pathways exist today that didn’t
• Information sources exist today that didn’t
• Each of these makes new things possible.
Participatory Takeawaysfor the Arriving Future: 3/3
• This is not a rabble-based revolution. Medical and academic authority has been declaring it for years
• Nobody can make the most of medicine’s potential without knowing this and figuring it out
• Market leaders will be the ones who are known for saving additional lives in this way.
• 99% of patients wanted to continue
• 17-26% of doctors preferred not to…– But when given the chance to stop, none did
• 85-89% of patients said availability of open notes would influence their choice of providers and health plans
“e-Patient Dave” deBronkartTwitter: @ePatientDave
facebook.com/ePatientDaveLinkedIn.com/in/[email protected]
Enable the Rise of the Participatory Patient