the imperative to anchor care in patient needs & perspectives
TRANSCRIPT
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
The Imperative to Anchor Care in Patient Needs & Perspectives
Flexner, the father of medical education, called patients
“clinical material” – so: J
Flexner, the father of medical education, called patients
“clinical material” – so: J
How I came to be here• High tech marketing• Data geek; tech trends; automation• 2007: Cancer discovery & recovery
• 2008: E-Patient blogger
• 2009: ParticipatoryMedicine, Public Speaker
• 2010: full time
• 2011: international
“I want to note especially the importance of the resource
that is most often under-utilized in our information
systems – our patients”
Charles Safran MD, Beth Israel Deaconess quoting his colleague, Warner Slack MDTestimony to the House Ways & Means subcommittee on health, 2004
Institute of Medicine – Sept 2012Major New Report: “Best Care at Lower Cost”
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.
Who gets to saywhat feels like
“care”?
Who,when all is said and done,
is the ultimatestakeholder?
What’s up(seriously)
with medicine generallynot being interested
in hearing their thoughs?
My thanks• Harlan Lampert:
enmeshment
• Karen Peterson: age regression,EMDR
• Lucy Jo Palladino:The Edison Trait, Attention Snatchers
The semicolon tattoo
The semicolon tattoo
And three ADD author/expertsNed Hallowell
John Ratey
ThomHartmann
What were the patients’ perspectives on the ADD Forum?? Look:
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.
The Forum t-shirt we had printed – front:
The Forum t-shirt we had printed – back:
The book we had printed of our best classic threads:
(Still available on Amazon)
Whole Earth Catalog “Millennium Edition”1994
“Health Online”– in 1996!
e-Patients.net founderTom Ferguson MD1944-2006
EquippedEngagedEmpoweredEnabled”
Doc Tom said,“e-Patients are
Pt of future
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 weddingsin the U.S. met online
– 2011: One in five couplesmet online
The Engaged e-Patient12 items in my pre-appointment “agenda” email
Another excerpt from that email (first public showing)
The Incidental FindingRoutine shoulder x-ray, Jan. 2, 2007
“Your shoulderwill be fine …but there’s something in your lung”
Primary Tumor: Kidney
E-Patient Activity 1:Researching my condition
Classic Stage IV, Grade 4
Renal Cell Carcinoma
Illustration on the drug company’s
web site
Median Survival:24 weeks
After the shockyou’re left with the question:
What are my options?What can I do?
Get engaged.
Get it in gear.Do everything you can.
E-Patient Activity 2:“My doctor prescribed ACOR”
(Community of my patient peers)
ACOR members 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– And one of them was at my hospital
Surgery & Interleukin worked.Target Lesion 1 – Left Upper Lobe
Baseline: 39x43 mm 50 weeks: 20x12 mm
How can it be
that the most usefuland relevant and
up-to-the-minute information
can exist outside of traditional channels?
Because of the Web, Patients Can Connect to Information and Each Other (and other Providers)
“The emerging world of the e-patient cannot be fully
understood and appreciated in the context of
pre-internet medical constructs.”
2004
1957
Stages a scientific field goes through• Normal science• Puzzle solving• Paradigm• Anomaly• Crisis• Revolution
The state of patient engagement today:
A puzzle with no agreed paradigm.
Many frameworks
Many conceptions of patients’ nature
• Compliant?
• Autonomous?
• Collaborative?
Result:• Inconsistent standards of practice
unwarranted by any evidenceregarding appropriate patient actions
• Lack of policy supportfor patient and family engagement
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
• “In my opinion, doctors talk about best medical practices and outcomes based on their experiences and education. The power of patients is that they find ways to integrate that advice/knowledge into REAL LIFE.
“What’s the difference between your view
and medicine’s?”
• “Telling a patient that an insulin pump might be a useful diabetes manage-ment tool is one thing, but explaining how to deal with the emotional response to a physical symptom, the societal perception, influence on relationships, etc. is a whole different “prescription”
“What’s the difference between your view
and medicine’s?”
• “As a diabetes patient, I view healthcare as something that should be an investment in my current and future health. Proactive care. KEEP ME ALIVE AND HEALTHY.
“What’s the difference between your view
and medicine’s?”
• “The system” seems to be more reactive and wants to amputate my leg instead of investing in me, and in research and treatments, to keep that leg on.”
“What’s the difference between your view
and medicine’s?”
THIS is “patient perspectives”:
The patient’s way of viewing the issues.Patient-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.
Paul Grundy MD, head of worldwide healthcare for IBM (as an employer)
1996
“e-Patient” is introduced –this week – at the first Health 2.0 Asia, in Japan
Paternalistic caring
“No, honey –you don’t know what you need.”
“I’ll take care of you.”
Sensible – up to a point
“I’ll decide for you.”
When does autonomy become appropriate?
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
“e-Patient Dave” deBronkartTwitter: @ePatientDavefacebook.com/ePatientDaveLinkedIn.com/in/[email protected]
It’s Imperative that weAnchor Care in Patient Needs & Perspectives