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E-Patients, experts with lived experience

By July 2, 2017August 20th, 2017Advocate, Caregiver, ePatient, Informaticist

This week I connected a patient with expertise in billing with a patient at the tail end of chemo struggling with huge unexpected bills. I introduced a cancer survivor with web design skills to a patient advocate setting up a new blog.

I’m struck by the breadth and depth of professional skills I encounter as I explore e-patient communities. (e-patient: empowered, engaged, enabled, equipped).  e-Patients have lived experience. I encountered the concept of lived experience first while working in the mental health world. According to the Mental Health Coalition of South Australia (MHCSA) a lived experience worker is “a person who is employed in a role that requires them to identify as being, or having been a mental health consumer or carer.”

The Geek Feminism Wiki says the term lived experience is used to describe the first-hand accounts and impressions of living as a member of a minority or oppressed group. When women talk about what it’s like to be female in a predominantly male geek community, they are describing their lived experiences.

Just in the past several months, I’ve heard about lived experience from partners of veterans with PTSD, ICU survivors, cancer survivors, and parents of children with disability.

You could view lived experience as a redundant term –  is there unlived experience? When we shift to expert with lived experience the redundancy starts to make sense. It’s for emphasis. Including experts with lived experience at the table for governance, design, operations and learning in health research, policy, innovation, and service delivery changes and enriches those processes – often referred to as patient engagement.

I’m interested in maximizing the value of expert lived experience. Lived experience + professional skills =  value for the expert and the customer.