POS-312 PATIENT AND FAMILY ENGAGEMENT IN A PROVINCIAL KIDNEY NETWORK: WHAT HAVE WE LEARNED SO FAR?

Abstract

Patient and family engagement is about putting patients at the forefront of decision making about their care at the individual care, program and system levels. It is key to achieving a health system that is responsive to patients, and improving patient outcomes. However, few practical resources for purposeful and meaningful engagement exist. To support culture change for person- and family-centred kidney care, BC Renal, a provincial kidney network in Canada, adopted a formalized approach to involving people with lived experiences of chronic kidney disease in provincial committees and initiatives in 2019. A working group of patient partners and health professionals guided the development of a provincial patient and family engagement framework as well as the integration of patient voices in various ways across BC Renal. In addition to literature review, interviews were conducted to understand the benefits, challenges and supports required to enable patient and family engagement from various perspectives. As the framework was being developed, the working group also provided overall direction on the curation and development of related resources, outreach activities and evaluation. Utilizing a comprehensive framework and communications strategy, the number of patient partners has grown more than 5-fold, with their involvement in over 30 engagement opportunities within a year. In June 2020, the first annual evaluation involved the administration of a set of surveys to capture the experience of patient and family engagement in BC Renal. The response rates were 100% for the patient partner survey and 60% for the health professional survey. Most patient partners indicated satisfaction with their engagement opportunities, with 92% responding that they were able to express their ideas comfortably, and felt their ideas were heard. Responses from health professionals were very encouraging as well. 92% said they were clear on and comfortable with their roles in supporting their patient partners. Furthermore, the narrative feedback describes more purposeful patient and family engagement, as well as early signs of positive impact with respect to person- and family-centred kidney care. Improvement opportunities identified include clearer communication about roles and expectations of patient partners in their specific committees and groups, and looping back to patient partners regarding their influence on various efforts. A series of supportive strategies are enabling impactful patient and family engagement in kidney care within the provincial network. These early efforts prime the culture change for patient- and family-oriented kidney care and research to advance patient outcomes and experiences.