A Family’s Experience with Harm in the Social Media Age Emily Paterson A Patient Advocate’s Perspective epaterson001@gmail.com Nov 3, 2017 1
Change Agents Nov 3, 2017 2
May 24, 2014 Nov 3, 2017 3
Radioulnar synostosis 1st arm x-ray on 2/20/15 10 months after injury - 3rd medical facility Nov 3, 2017 4
Post traumatic radioulnar synostosis • Symptoms- loss of arm rotation • Rare fusion of radius and ulna in forearm -5° pronation Keyboarding 5 Nov 3, 2017
Day 1- Evaluation & Diagnosis May 24 2014 Day 3 Surgical Planning May 27-28 Day 4 Emergency Re-splinting Potential Problems in 1 st Facility June 2 Day 8 Surgery & Problems Cast Removed (24 days) & June-October Physical Therapy (4 months) October 2014 & February 2015 Specialist Consultations Nov 3, 2017 6
The impact on family • Everyone lost trust in big medicine • Peter (physical, emotional, adjustments, future) • Dave (sleep, sadness, adjustments) • Emily (physical, emotional, patient advocacy) Nov 3, 2017 7
What helped most? What helped most? Honesty reduces doubts, guilt and improves physical & emotional states. Everyone needs this ! Nov 3, 2017 8
What do we do for Peter and others? • Patient reported questionnaires? • School 504 physical disability plan & then what? • State Medical Board? • Medical Facility Patient Advocate? • Court? • Something else? Nov 3, 2017 9
Social media patient advocacy Transparency, root cause analyses & help others! Nov 3, 2017 10
Pressure to change! . May each of us work to make the 21 st century better ! epaterson001@gmail.com Nov 3, 2017 12
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