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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 |
|
| Leadership changes and staff turnover |
|
|
Pressure from senior management to achieve certain objectives that don't align with priorities identified by persons/patients and families and/or Policies/procedures misaligned with participant recommendations |
|
| 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 |
|
| Biased recruitment |
|
|
Failure to recruit those who can effectively communicate and contribute |
|
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 |
|
| Limited opportunities outside of meetings to interact and build trust |
|
|
Fears of intimidation |
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| Reduced motivation and/or commitment (e.g., no personal motivation, unable to see progress, too time-intensive) |
|
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.
Remember:
- 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.
