{"id":19771,"date":"2017-07-22T09:02:42","date_gmt":"2017-07-22T13:02:42","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=19771"},"modified":"2017-07-22T09:02:42","modified_gmt":"2017-07-22T13:02:42","slug":"lived-experience-expertise-value","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2017\/07\/lived-experience-expertise-value.html","title":{"rendered":"Lived Experience + Expertise = Value"},"content":{"rendered":"<p>Recently I connected a patient expert in insurance and provider 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 linked a parent of a 10-year-old child with severe disabilities with a new parent discovering his child has disabilities. \u00a0She&#8217;s coaching him in self-care and care management.<\/p>\n<p>I&#8217;m struck by the breadth and depth of professional and life skills I find as I explore e-patient communities. e-Patients have <em>lived experience<\/em>. I encountered the concept of\u00a0lived experience\u00a0first while working in the mental health world. According to the\u00a0<a href=\"http:\/\/www.mhcsa.org.au\/\" target=\"_blank\" rel=\"noopener\">Mental Health Coalition of South Australia (MHCSA)<\/a>\u00a0a lived experience worker is \u201ca person who is employed in a role that requires them to identify as being, or having been a mental health consumer or carer.&#8221;\u00a0<a href=\"http:\/\/geekfeminism.wikia.com\/wiki\/Lived_experience\" target=\"_blank\" rel=\"noopener\">The Geek Feminism Wiki<\/a>\u00a0says the\u00a0term lived experience\u00a0is 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&#8217;s like to be female in a predominantly male geek community, they are describing their lived experiences.\u00a0I&#8217;ve heard about\u00a0lived experience\u00a0from\u00a0<a href=\"http:\/\/nsuworks.nova.edu\/tqr\/vol21\/iss4\/4\/\" target=\"_blank\" rel=\"noopener\">partners of veterans with PTSD<\/a>,\u00a0<a href=\"https:\/\/www.nytimes.com\/2017\/04\/01\/opinion\/sunday\/my-icu-patient-lived-is-that-enough.html\" target=\"_blank\" rel=\"noopener\">ICU survivors<\/a>,\u00a0<a href=\"http:\/\/cancer101.org\/i-am-a-survivor\/\" target=\"_blank\" rel=\"noopener\">cancer survivors<\/a>, and\u00a0<a href=\"https:\/\/durgastoolbox.com\/\" target=\"_blank\" rel=\"noopener\">parents of children with disability<\/a>.<\/p>\n<p>You could view\u00a0<em>lived experience<\/em>\u00a0as a redundant term &#8211;\u00a0 is there\u00a0<span style=\"text-decoration: underline\">unlived<\/span> experience? When we shift to\u00a0<em>expert\u00a0with\u00a0lived experience<\/em>\u00a0the redundancy starts to make sense. It&#8217;s for emphasis.\u00a0Experts with lived experience can help each other in two ways. 1. As peers to help manage life and health care as others can&#8217;t. Examples include care planning, home accessibility, financial management, team coordination, record consolidation, coaching and self-care 2. Experts with lived experience can help each other earn a living in the gig economy, such as providing services in social media and web development, strategic planning, financial management, business development, user testing, coaching, and grant writing.<\/p>\n<p>People with lived experience should be paid for their expertise. I appreciate when people help me pro bono and I gladly volunteer\u00a0to help others. But I&#8217;d like the opportunity to\u00a0be paid for my skill and I think I should pay for others&#8217; skill helping me better manage a stressful situation or ply my trade. I&#8217;m working on this. More to come.<\/p>\n<p><strong>Lived experience + expertise =\u00a0 value for the expert and the consumer\/customer.\u00a0<\/strong><\/p>\n<p>&nbsp;<\/p>\n","protected":false},"excerpt":{"rendered":"<p>Recently I connected a patient expert in insurance and provider billing with a patient at the tail end of chemo struggling with huge unexpected bills. 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