Experts by Experience diaries

EbE diaries (sometimes referred to as patient e-Health diaries) are a rich source of information for all medicine, health and social care professionals. They can be used to help professionals, including students, to build empathy and develop a greater understanding of how people live with a specific condition, of how it is to care for someone with specific needs and what barriers or challenges people face when accessing healthcare.

Patient blogs, podcasts, vlogs (video blogs) and photostories can be easily discovered via social media. Sometimes created and published by individuals and sometimes curated and published by organisations these sources offer a wealth of perspectives on lived experience. Examples include You, Me and the Big C podcast, Henry Fraser’s Instagram, CP Diaries vlogs, the How does it feel for me? website, Erwin James’s A life inside and A life outside columns for The Guardian, Coma2020 a film by Michael Rosen about his experience of being put into an induced coma in intensive care after falling ill with Covid (includes a Q&A with his doctor), the Virtual Empathy Museum's Digital Storytelling Room, Wellcome Collection Stories and Radio Therapy, a series of podcasts featuring young people with cancer sharing their lived experience.

 

As well as social media-hosted material, there are many documentaries which utilise the personal accounts of EbE. Using LibrarySearch, you can access the following collections.

Disability in the Modern World: a history of social movement An online collection of 150,000 pages of primary sources and hours of documentaries and interviews featuring stories from the community.

Kanopy An on-demand video streaming service. Search for terms like disability, illness and health to find documentaries and independent films.