Engaging persons with lived experience

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.

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Engaging persons with lived experience
Continuum of engagement of persons with lived experience

Engaging persons with lived experience ranges from consultation to involvement, to partnership and shared leadership, depending on the desire of all involved (RNAO, 2015).

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Engaging persons with lived experience
Is your change team ready to engage persons with lived experience?

The readiness of a change team to accept and embrace persons with lived experience, as part of a change initiative, can impact outcomes.

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Engaging persons with lived experience
Engaging advisors and advisory councils

If your organization has already established the engagement of persons with lived experience,  your organization may already have community advisors or advisory councils.

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Engaging persons with lived experience
Organizational culture to support engagement

You and your team can first assess whether your organization already has a culture that commits to engaging persons with lived experience.

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Engaging persons with lived experience
Considerations for getting started

Once you and your change team have confirmed you are committed to including persons with lived experience as part of your change initiative, it may be helpful to focus on several phases.

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Engaging persons with lived experience
Examples of effective engagement

Watch recorded presentations from change agents on examples of successful engagement of persons with lived experience with the implementation of BPGs.

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Engaging persons with lived experience
Evaluating engagement

You and your team may consider collecting continuous feedback from persons with lived experience to get input on how you can improve their experience during the partnership.

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Engaging persons with lived experience
Case study

In early 2018, Kidney Health Australia (KHA) developed a guideline for managing the percutaneous renal biopsy for individuals with chronic kidney disease (CKD) (Scholes-Robertson et al., 2019).

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Engaging persons with lived experience
Check your progress

Signs that you and your change team are making progress with person and family engagement.

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Engaging persons with lived experience
Additional resources

Additional resources to support you and your change team.

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