If People Were Kaleidoscopes: Sharpening the Resolution on Patient Engagement in Safety

Healthcare is unacceptably error prone. The question remains why, with 20 years of evidence, is error and harm reduction not being effective? While precise numbers may be debated, all stakeholders recognize the frequency of healthcare errors is unacceptable, and greater efforts to ensure safety must occur. In recent years, one of these strategies has been the inclusion of the patient and their family as partners in safety, and has been a required organizational practice of Accreditation Canada in many of their standard sets. Existing patient advisories created to encourage engagement, have typically not included patient perspectives in their development or been comprehensively evaluated. There are no existing tools to determine if and how a patient wants to be involved in safety engagement. As such, a multi-phased study was undertaken to advance our knowledge about the client’s and family’s role in promoting safety. Phase 1 of the study was a scoping review to methodically review the existing literature about patients’ and families’ attitudes, beliefs and behaviours about their involvement in healthcare safety. Phase 2 was designed to inductively explore how a group of patients in an Ontario, Canada, community hospital, describe healthcare safety and see their role in preventing error. The study findings, which include the narratives of 30 patients and 4 family members, indicate that although there are shared themes that influence a patient’s engagement in patient safety, every individual has unique, changing beliefs, experiences and reasons for involvement. Five conceptual themes emerged from their narratives: Personal Capacity, Experiential Knowledge, Personal Character, Relationships, and Meaning of Safety. These study results will be used to develop and test a pragmatic, accessible tool to enable providers a way to collaborate with patients for determining their personal level and type of safety involvement. The most ethical and responsible approach to healthcare safety is to consider every facet and potential way for improvement. This exploratory study provides fundamental insights into the complexity of patient engagement in safety, and evidence for future steps.

Need To Be Adored

Faced with a diagnosis of multiple sclerosis, I began with the objective of discovering methods for creating art that were still accessible to me. Along the way, I encountered others who had travelled this road before me. Their experiences led me to examine, not only my art, but also my political orientations, my love obligations and my transitioning self. In my varied art pieces, I conjure something from diverse sources and different worldviews, including contemporary feminist performance art and disability cultural theory. My thesis is a project. I make things: puppets, videos and performances, which included the exhibition, Need to be Adored (2014), staged in the digital media lab of the Isabel Bader Centre for the Performing Arts in Kingston, Ontario, Canada. The exhibition introduced thirteen of my puppets and a thirty-two-minute looped video. Following the exhibition, I put the puppets away and spent two years reading. Finally, taking my inspiration from Carolyn Ellis’s The Autoethnographic I (Ellis 2004), I turned my processes into words. I wrote out my experiences. I created an alternative text of my identity from an able-bodied cis-identified woman into a disabled trans-feminist artist academic. The writing required an uncomfortably intimate examination of my life. Nothing less than complete honesty would allow me to understand my new location. The resulting text is a lyrical and sometimes whimsical flow of consciousness that invites the reader to imagine what it might be like to engage in such a candid review of everything one holds close to one’s heart. Contained within are all my identities. In this text I let some out. This is a story of unsettling. I am working on my art practices, creating a cast of characters from cloth. Puppets. El becomes the exulted main character of a fictional accounting. She uncovers her queer roots and begins to see that she is at the centre of a very strange geography. Her desire to make film is revealed as she re-remembers her childhood through a disability lens.