What is engaging persons with lived experience?
Engaging persons with lived experience means intentional partnering with patients, families or communities throughout the planning, delivery and evaluation of health services to improve quality and safety (Agency for Healthcare Research and Quality, 2016; Canadian Patient Safety Institute, 2017; Nelligan et al., 2002; RNAO, 2015).
This involves engaging persons with lived experience:
- ahead, during and after a practice change to ensure the change is beneficial to the intended end-user (Kearsey, 2021)
- anywhere across the health-care continuum where the practice change is being introduced (for example, service or academic organizations) (RNAO, 2015)
Why is engaging persons with lived experience important?
- Engagement improves health outcomes, including increased safety and quality, satisfaction with care, and cost-effective services.
- Engagement helps individualize health care, develops trust, and brings loyalty to an organization by encouraging persons with lived experience to take an active and influential role in decision-making for their own health and wellbeing.
- Engagement enables persons with lived experience to share in collective ownership alongside staff to improve health outcomes.
SOURCES: Carman et al., 2013; Liang et al., 2018; Canadian Patient Safety Institute, 2017.
More about engaging persons with lived experience
Persons with lived experience bring unique and valuable insights to a change. They:
- provide personal perspectives through storytelling, surveys, focus groups and targeted groups
- represent the voices, broad views and experiences of a range of people affected by a condition
- give experiential advice to influence decisions
- should be valued for significant knowledge as recipients of care
- may take the form of informant, advocate, advisor, expert, or partner for the experiences and journeys they have lived through
SOURCES: Health Quality Ontario, 2017; RNAO, 2015; Tong et al., 2019.