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Transforming the Culture of Patient Care
Daniel Z. Sands, MD, MPHAssistant Clinical Professor of Medicine,
Harvard Medical SchoolChairman and Co-Founder,
Society for Participatory MedicineBoston, MA
@DrDannySands
Healthcare As Collaboration:Using Participatory Medicine to Cure
What Ails Healthcaree-Patient Dave deBronkart
Patient Engagement EvangelistChair Emeritus and Co-Founder,
Society for Participatory MedicineNashua, NH
@ePatientDave
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@DrDannySands @ePatientDave
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@DrDannySands @ePatientDave
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@DrDannySands @ePatientDave
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@DrDannySands @ePatientDave
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@DrDannySands @ePatientDave
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@DrDannySands @ePatientDave
Role Play 1:December 2006
(before diagnosis)
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@DrDannySands @ePatientDave
Our
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• Asynchronous: enables efficient communication
• Cost-effective • Benefits both patients and
physicians• Helps build our relationship• Can even be a channel for care
delivery• Best practices are well defined
e-Messaging Supports Collaboration
Sources: Kane B, Sands DZ, JAMIA 1998. Delbanco T, Sands DZ, NEJM 2004.@DrDannySands @ePatientDave
1998
Alternate version that I’d like to use
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Best Practice Mnemonics for EHR Use: “HUMAN” and “LEVEL”
Source: Permanente Federation
2004 c/o Larry Garber, MD,
and Wei Wei Lee, MD
H Honor the “Golden Minute,” with first minutes tech-free
U Use the (equilateral) triangle of trust
M Maximize patient interaction
A Acquaint yourself with patient record, ideally before the visit
N Nix the technology and keep eye contact (hands off keyboard)
when patient discussing sensitive topic
L Let the patient look on
E Eye contact with patient
V Value the computer as a tool
E Explain what you are doing as you do it
L Log off and tell the patient@DrDannySands @ePatientDave
And the other graphic (level) has no meaning unless explained
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Seek (or welcome!) your patient's participation.
Help your patient explore and compare treatment options.
Assess your patient's values and preferences.
Reach a decision with your patient.
Evaluate how it works out.
The SHARE Approach:5 Essential “Steps up the Stairs” of Shared Decision Making
Based on https://www.ahrq.gov/professionals/education/curriculum-tools/shareddecisionmaking/@DrDannySands @ePatientDave
the graphic made no sense so it was confusing
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@DrDannySands @ePatientDaveSource: KP.org screenshots and data courtesy of Kate Christensen, MD
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Real-World Patient Experience
This is too cool. It's almost SILLY that things can be this easy. I am having a very good patient/customer experience so far.
@DrDannySands @ePatientDave
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Affective Impact: 61M Minister with DM and Chronic Pain
I have a lot of medical issues. This email system has left me feeling comfortable and in good hands! Otherwise, I would feel as cold, depleted, and alone, as the lifeless tree in my front yard in the deepest of winter!
@DrDannySands @ePatientDave
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2007: My “Incidental Finding”Routine shoulder x-ray, Jan. 2, 2007
�Your shoulderwill be fine …but there's something in your lung�
@DrDannySands @ePatientDave
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Multiple Tumors In Both Lungs
@DrDannySands @ePatientDave
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E-Patient Activity:Researching My Condition
@DrDannySands @ePatientDave
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Classic Stage IV, Grade 4
Renal Cell Carcinoma
Median Survival:24 weeks
@DrDannySands @ePatientDave
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Facing the grave
My mother’s face
My daughter
@DrDannySands @ePatientDave
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After the shockyou’re left with the questions:
What are my options?What can I do?
@DrDannySands @ePatientDave
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@DrDannySands @ePatientDave
Role Play 2:January 2007
(after diagnosis)
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Complementary Information Types
General(information
about my disease)
Specific(my health
information)Peer
Info/Support(experience and
knowledge of others like me)
@DrDannySands @ePatientDave
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ìPierre Lévy, PhDPhilosopher, cultural theorist, and media scholar, University of Ottawa, 1997
No one knows everything. Everyone knows something. All knowledge resides in networks.
This photo by cpfl cultura is licensed under a Creative Commons Attribution 2.0 Generic License.
@DrDannySands @ePatientDave
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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.oWhen it does, about half the time it’s permanentoThe side effects are severe.
•Don’t let them give you anything else first•Here are four doctors in your area who do it
@DrDannySands @ePatientDave
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@DrDannySands @ePatientDave
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@DrDannySands @ePatientDave
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@DrDannySands @ePatientDave
OpenCommunication
Shared Decisions
Mutual Respect
Information Sharing
Engagement
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Asking Tacit Approval
Honest Disclosures
@DrDannySands @ePatientDave
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Shifting Paradigm?
Information asymmetry•Physician as oracle•Comfortable•A burden?
Information symmetry•Physician as partner•Threatening vs. liberating•Physician as healer
@DrDannySands @ePatientDave
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But What About Power Asymmetry?
Hierarchy Collaborative
Courtesy of Marge Benham-Hutchins @MargeBHutch
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e-Patients: It’s About Engagement!
@DrDannySands @ePatientDave
eEngagedEquippedEmpoweredEducatedEnlightened
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Humble Pie
@DrDannySands @ePatientDave
Life In Traditional Site
of Care
Life Outside Health Care
System
Hugo’s slide quotes Doc Tom.
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Beyond the Visit: Self-Monitoring Improves Outcomes
@DrDannySands @ePatientDave
Withings Wi-Fi scalePre-Diabetes Diagnosis
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Self-Monitoring Enables Change and Improvement
@DrDannySands @ePatientDave
Withings Wi-Fi scalePre-Diabetes DiagnosisFitness wristband & heart bandYMCA Diabetes Prevention Program(food training & physical activity)MyFitnessPal diet tracking appStrong support from spouse
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ParticipatoryMedicine.org
Society for Participatory Medicine (“SPM”)
Community Advocacy Research Education
@DrDannySands @ePatientDave
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@DrDannySands @ePatientDave
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October 2007 May 2009
Achieving Care’s Potential is ImportantDecember 2006
@DrDannySands @ePatientDave
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ìSlack WV. Patient Counseling by Computer, in Zeog S, Yarnall S, eds. The Changing Health Care Team Seattle: Medical Communications and Services Association, 1976, 108-11.
@DrDannySands @ePatientDave
[T]he largest and least utilized health care resource is the patient him/herself.
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Let’s Transform the Culture of Care!
@ePatientDave
@DrDannySands
Additional material at: S4PM.info/resources
@DrDannySands @ePatientDave