Compliance, Adherence, or Participation? Creating a Framework for Patient-Clinician Collaboration

ComplianceAdherence

Participation

Creating a Framework for Patient-Clinician

Collaboration

Casey Quinlan, Mighty Casey Media2016 Patient Engagement Summit

Today’s “State of Play”

© 2016 Mighty Casey Media

Imbalance of power much?

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


An example: ePatient Dave• Stage IV renal

cell cancer• Median survival

< 30 weeks• Diagnosed in

2007• Crowdsourced

tx options• Still NED in 2016


Citizen Science = winning• ACOR (now

Smart Patients)• Other RCC

patients weighed in

• Treatment *and* tips for surviving that treatment


Want more? OK: #diyps• T1D patient +

Twitter engineer = Do It Yourself Pancreas System

• Code shared on Github

• Now getting wide adoption


DIY … clinical trial?• DNA assay cost is

shrinking• Citizen Science is

growing• Mobile tech =

collaboration machines

• People/patients = smarter than you think


N of 1: Patient, heal thyself

Via peer-to-peer networks, cooked up successful tx formula in his kitchen.



Just oneexamplefrom SciStarter



The Core Issue!!

• “Compliance” = PATERNALISM

• “Adherence” = PATERNALISM

• “Participation” = PARTNERSHIP


But Casey, how do we …

• Get patients to participate?

• Keep them participating?

• Leverage those relationships?

• Lather, rinse, repeat?


[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!


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



Graduate course: TheNNT.com

Post-grad fellowship: #RightCare

• Goldilocks Medicine– Not too little– Not too much– JUST RIGHT

• “We the people” – Peer to peer– Paternalism– Partnership


RightCareAlliance.org

Key = Collaboration• Relationship is partnership• Partnership creates participation• Participation drives improved

outcomes• Adherence compliance • Partnership Participation SUCCESS


#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.)


#gmdd – Give Me My Damn Data

• Give me my health history + records


• Help me understand what I’m reading

• Show me the evidence

• Collaborate with me on treatment decisions

WEARENOT

WAITING© 2016 Mighty Casey Media

?© 2016 Mighty Casey Media

Casey Quinlanthe Mighty MouthMighty Casey [email protected]

Compliance, Adherence, or Participation? Creating a Framework for Patient-Clinician Collaboration

Healthcare