Considerations for getting started

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 the following phases:

1) secure commitment from your senior leadership team;

2) recruit and select persons for the change team;

3) support the engagement of persons at change team meetings; and

4)  show your appreciation to persons for their engagement in the change initiative.

1) Secure commitment from your senior leadership team
  • Ensure you have the commitment from your senior leadership team to engage persons/patients and their families in your change initiative.
    • Secure any additional resources you need to successfully onboard person and family members.
    • Determine the level of engagement you desire.
    • Confirm that you have the necessary processes, policies and procedures in place to support person and family engagement projects.

Ensuring success in this phase

The table below presents common barriers you and your team may encounter during this phase and ways you can overcome each barrier to optimize your success.

Barrier Strategies to address the barrier
Lack of senior leadership guidance
  • Ensure strong leadership support prior to initiating engagement.
  • If possible, engage senior leadership in the planning stages and incorporate their input into the plan.
Leadership changes and staff turnover
  • Involve supportive staff who have the leverage to effect change.
  • Involve active and engaged leadership staff.

Pressure from senior management to achieve certain objectives that don't align with priorities identified by persons/patients and families


Policies/procedures misaligned with participant recommendations

  • Where possible, choose recommendations that align with organizational goals and the strategic plan.
  • Engage with senior leaders to work on strategies to align person engagement with the organization’s mission, values and strategic directions.
Delays in putting ideas into action that require senior leadership decision-making Ensure access to leadership to facilitate ideas into action.

SOURCES: Bombard et al., 2018; Liang et al., 2018; Hatlie et al., 2020; Institute for Patient- and Family-Centred Care, 2011; Ocloo et al., 2021; O’Connor et al., 2016 Planetree, 2017; Pougheon-Bertrand et al., 2018;  RNAO, 2015; Sharma et al., 2018.

2) Recruit and select persons with lived experience for the change team
  • Establish clear eligibility criteria. This may include people who are:
    • interested in the topic;
    • comfortable speaking in a group;
    • comfortable sharing their personal experiences and able to use them constructively;
    • able to listen and hear different opinions; and
    • willing to respectfully challenge and question the status quo.
  • Develop an application process that asks for demographic information, an individuals’ connection with the health-care setting, their reasons for wanting to be involved, and their availability in terms of the time commitment.
  • Meet with candidates to find out more about their story and determine their fit for the role.

Ensuring success in this phase

The table below presents common barriers that you and your team may encounter during this phase, and ways you can overcome each barrier to optimize your success.

Barrier Strategies to address the barrier

Disproportionate involvement of providers compared to persons/patients and families

  • Recruit a higher proportion of persons/patients and families than staff
Biased recruitment
  • Aim for a wide representation of persons/patients and families.
  • Recruit through a variety of networks and target within the community of interest.

Failure to recruit those who can effectively communicate and contribute

  • Select based on certain characteristics and skills.

SOURCES: Bombard et al., 2018; Liang et al., 2018; Hatlie et al., 2020; Institute for Patient- and Family-Centred Care, 2011; Planetree, 2017; Pougheon-Bertrand et al., 2018; Sharma et al., 2018; Wieczorek et al., 2018. 

3) Support the engagement of persons with lived experience at change team meetings

Develop an orientation program to ease the transition. This could include a meeting prior to the change team meeting, which includes the following:

  • information about the topics and scope
  • details on the knowledge tools (e.g., BPGs) or data that will be part of the change initiative
  • a discussion on how confidentiality and privacy will be protected 
  • organizational processes for person engagement

Begin working together to foster safe and respectful meeting spaces by:

  • planning to hold meetings at a time and location that is convenient
  • spending time on introductions of everyone and their role
  • clarifying the purpose of the team and the roles and responsibilities of each member, to validate their involvement
  • emphasizing the anticipated benefits of including persons
  • providing an agenda and minutes in advance, with sufficient time for review

Continue working together to recognize and support the unique needs of persons by:

  • including in meetings a brief story that captures persons’ experiences and perceptions of care
  • monitoring for and limiting the use of medical jargon, and explaining technical terms when used
  • asking persons/patients and families direct questions regarding their opinions, to encourage participation
  • acknowledging tensions and differing opinions that may arise, and explaining there are no right or wrong answers – all opinions are respected
  • continually monitoring and discussing the process of working together with ongoing feedback (e.g., debrief after each meeting)

Ensuring success in this phase:

Barrier Strategies to address the barrier

Role disagreement between persons/patients, families and staff

  • Clearly define and formalize the roles and responsibilities for each individual member of the team.
Limited opportunities outside of meetings to interact and build trust
  • Provide opportunities for regular interaction, both formal and informal.
  • Allow time to develop trusting relationships.

Fears of intimidation

  • Institute an onboarding and orientation process.
  • Provide persons/patients, families and staff with joint training.
Reduced motivation and/or commitment (e.g., no personal motivation, unable to see progress, too time-intensive)
  • Institute a term membership to allow new members to join and contribute new ideas.
  • Regularly track progress and keep members informed (e.g., provide monthly, quarterly and/or annual reports, use a tracking tool).
  • Recognize persons/patients and families may be unable to attend every meeting.
  • Reinforce the value of persons/patients and families to the change team by acknowledging their absence and keeping them informed with meeting minutes.
  • Offer flexibility in the way persons/patients and families can participate in decisions (e.g., in-person meetings, conference calls, and/or review of written materials).

SOURCES: Bombard et al., 2018; Chegini et al., 2020; Liang et al., 2018; Hatlie et al., 2020; Institute for Patient- and Family-Centred Care, 2011; Ocloo et al., 2021; Planetree, 2017; Sharma et al., 2018; Wieczorek et al.,2018.


  • Include more than one person with lived experience (aim for at least one-third representation on the committee).
  • Recognize the person will grow and develop in their role.
  • Recognize the person may require varying levels of support based on previous experiences.

4) Show your appreciation for persons with lived experience who engaged in the change initiative
  • Consider compensating persons/patients and families for their time.
    • Offer, where possible, an honorarium to cover the costs incurred as a result of involvement (e.g., travel, accommodation, parking, meals).
    • Respect the individual, first-hand lived experience and recognize how this knowledge can contribute to improved health outcomes.

SOURCES: American Institute for Research, 2019; Boaz et al., 2016; Health Quality Ontario, 2020; Institute for Patient and Family-Centered Care, 2011; Kemper et al., 2013; Liang et al., 2018; Planetree, 2017; Sharpe et al., 2018; Wieczorek et al., 2018.

Remember: Once you receive feedback from persons with lived experience, make sure you share this feedback with other stakeholders - as aggregated and without disclosing identities -- to increase awareness of the importance of the voice of persons throughout the leading change process. This is especially important when the change directly impacts their health and wellbeing.