The document discusses creating a framework for patient-clinician collaboration. It describes how patients are taking more active roles in their healthcare through crowdsourcing treatment options and participating in "citizen science" projects. However, the current model is still paternalistic, focusing on compliance and adherence rather than partnership. True participation requires listening to patients and engaging them as partners through shared decision making tools and access to their own health data. When clinicians form collaborative relationships with patients, it can drive improved health outcomes.

1. Compliance
Adherence
Participation
Creating a Framework for
Patient-Clinician Collaboration
Casey Quinlan, Mighty Casey Media
2016 Patient Engagement Summit

2. Today’s “State of Play”
© 2016 Mighty Casey Media
Imbalance of power much?

3. Not that doctors have it much easier...
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4. © 2016 Mighty Casey Media

5. An example: ePatient Dave
• Stage IV renal cell
cancer
• Median survival <
30 weeks
• Diagnosed in 2007
• Crowdsourced tx
options
• Still NED in 2016
© 2016 Mighty Casey Media

6. Citizen Science = winning
• ACOR (now Smart
Patients)
• Other RCC patients
weighed in
• Treatment *and*
tips for surviving
that treatment
© 2016 Mighty Casey Media

7. Want more? OK: #diyps
• T1D patient +
Twitter engineer =
Do It Yourself
Pancreas System
• Code shared on
Github
• Now getting wide
adoption
© 2016 Mighty Casey Media

8. DIY … clinical trial?
• DNA assay cost is
shrinking
• Citizen Science is
growing
• Mobile tech =
collaboration
machines
• People/patients =
smarter than you
think
© 2016 Mighty Casey Media

9. N of 1: Patient, heal thyself
Via peer-to-peer networks, cooked up successful
tx formula in his kitchen.
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10. © 2016 Mighty Casey Media
Just
one
example
from
SciStarter
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11. © 2016 Mighty Casey Media

12. The Core Issue!!
• “Compliance” = PATERNALISM
• “Adherence” = PATERNALISM
• “Participation” = PARTNERSHIP
© 2016 Mighty Casey Media

13. But Casey, how do we …
• Get patients to participate?
• Keep them participating?
• Leverage those relationships?
• Lather, rinse, repeat?
© 2016 Mighty Casey Media

14. [answer key]
• Get patients to participate?
• ASK, AND LISTEN TO THE ANSWER!
• Keep them participating?
• I repeat: LISTEN!
• Leverage those relationships?
• “If you listen, they will come.”
• Lather, rinse, repeat?
• [wait for it …] LISTEN!
© 2016 Mighty Casey Media

15. What you’ll need (other than your ears)
• Easily understood literacy builders
– Option Grids (optiongrid.org)
– Iodine (iodine.com)
– Emmi Solutions programs
– Polyglot Systems (multi-lingual)
– Build your own decision aids
© 2016 Mighty Casey Media

16. © 2016 Mighty Casey Media
Graduate course: TheNNT.com

17. Post-grad fellowship: #RightCare
• Goldilocks Medicine
– Not too little
– Not too much
– JUST RIGHT
• “We the people”
– Peer to peer
– Paternalism
– Partnership
© 2016 Mighty Casey Media

18. Key = Collaboration
• Relationship is partnership
• Partnership creates participation
• Participation drives improved outcomes
• Adherence compliance
• Partnership Participation SUCCESS
© 2016 Mighty Casey Media

19. #wearenotwaiting
• The only thing you have to fear is fear
itself. (Patients are smarter than you
think.)
• Not to decide is to decide. (Failure to
engage is a guarantee of #fail.)
• No battle plan survives first contact with
the enemy. (So stop thinking of us as
forces set in opposition.)
© 2016 Mighty Casey Media

20. #gmdd – Give Me My Damn Data
• Give me my health history + records
© 2016 Mighty Casey Media
• Help me understand what I’m reading
• Show me the evidence
• Collaborate with me on treatment decisions

21. WE
ARE
NOT
WAITING
© 2016 Mighty Casey Media

22. ?
© 2016 Mighty Casey Media

23. Casey Quinlan
the Mighty Mouth
Mighty Casey Media
mightycasey.com
casey@mightycasey.com