Developing the first pan-Canadian survey on patient engagement in patient safety.

BACKGROUND: Patient safety is a worldwide problem, and the patient contribution to mitigate the risk of patient harm is now recognized as a cornerstone to its solution. In order to understand the nature of integrating patients into patient safety and healthcare organizations and to monitor their integration, a Canadian survey tool has been co-constructed by patients, researchers and the Canadian Patient Safety Institute (CPSI). This questionnaire has been adapted from the French version of the patient engagement (PE) in patient safety (PS) questionnaire created for the province of Quebec, Canada. METHODOLOGY: The pan-Canadian PE in PS survey tool was developed in a five-step process: (1) a literature review and revision of the initial tool developed in the province of Quebec; (2) translation of the French questionnaire into an English version tool; (3) creation of a Canadian expert advisory group; (4) adaptation of the English version tool based on feedback from the expert advisory group (assessment and development of the construct's dimensions, wording assessment and adaptation for pan-Canadian use, technical testing of the online platform for the survey); and (5) pilot testing and pre-validation of the tool before pan-Canadian use. RESULTS AND CONCLUSION: Eight pan-Canadian PE in PS surveys were completed from five Canadian provinces by the expert advisory group and six surveys were completed during the pilot project by participants from different provinces in Canada. This survey tool comprises 5 sections: (1) demographic identification of the participants (Q1 to Q5); (2) general questions (Q6 to Q17); (3) the patient engagement process (experience level of participants and organizational incentives for PE in general) (Q18 to Q33); (4) PE in PS processes, such as current activities, strategies, structures, resources and factors (Q34 to Q67); and (5) the context and impact of PE in PS initiatives in Canadian healthcare organizations (CHOs) (Q68 to Q75), including outcome identification, improvement mechanisms and strategies, evaluation mechanisms, and indicators.

Beyond catharsis: the nuanced emotion of patient storytellers in an educational role.

CONTEXT: As health care organisations seek to cultivate patient and family-centred care, patient storytelling has emerged as a valued educational resource. However, repeatedly harnessing patient perspectives to educate health care professionals may have consequences. We need robust insight into what it means to be a patient storyteller in order to ensure ethical and appropriate engagement with patients as an educational resource. METHODS: Constructivist grounded theory was used to explore the experience of patients involved in a storytelling curriculum as part of hospital staff continuing education. All 33 storytellers were invited by e-mail to participate in the study. Twenty-six storytellers responded to the invitation, and 25 could be scheduled to participate. Using theoretical sampling, semi-structured interviews were conducted and analysed in a process that was inductive, iterative and comparative. RESULTS: Participants described the central role of emotions in their storytelling experience, which varied from 1 to 25 tellings over a period of 1 month to 2 years. These emotions were shaped by the passage of time, repetition of storytelling and audience acknowledgement. However, emotion remained unpredictable and had lingering implications for storytellers' vulnerability. CONCLUSION: The multiple storytelling experiences of our participants and ongoing educational nature of their role provides unique insight into how emotions ebb and flow across tellings, how emotions can be both a surprise and a rhetorical strategy, and how emotions are influenced by audience acknowledgement. These findings contribute to an emerging conversation regarding the power and politics of selecting and using storytellers for organisational purpose. Implications include how we support patient storytellers in educational roles and how we can sustainably integrate patient storytelling into health professional education.

Three Sides to Every Story: Preparing Patient and Family Storytellers, Facilitators, and Audiences.

BACKGROUND: There is a growing recognition that patient engagement is necessary for the cultivation of patient- and family-centered care (PFCC) in the hospital setting. Acting on the emerging understanding that hearing stories from our patients gives valuable insight about our ability to provide compassionate PFCC, we developed an educational patient experience curriculum at our acute care teaching hospital. OBJECTIVES: To understand the benefits and consequences of patient storytelling and to explore the impact of our curriculum on participants. METHODS: The curriculum was codesigned with patients to illustrate the value and meaning of PFCC to health professional audiences. We surveyed audience members at nursing orientation events and interviewed the patient storytellers who shared their stories. RESULTS: Participants indicated that patient stories could serve as lessons or reminders about the dimensions of PFCC and could inspire changes to practice. Storytellers reported an immensely rewarding experience and highlighted the value of educating and connecting with participants. However, they reported that the experience could also pose emotional challenges. CONCLUSION: Careful and considerate facilitation of storytelling sessions is crucial to the delivery of a curriculum that is beneficial to both patients and participants. Our storytelling framework offers a novel approach to engaging patients in education, and it contributes to our existing understanding of how patient engagement efforts resonate within organizations.