Building a culture of partnership between people with lived experience of suicide and researchers in suicide prevention
Black Dog Institute’s Centre of Research Excellence in Suicide Prevention (CRESP)
Facilitate a co-design workshop that brings together the perspectives of people with lived experience of suicide and staff from Centre for Research in Suicide Prevention (CRESP). The aim of the workshop was to begin to understand the value of lived experience perspectives in research.
Lived Experience Framework: Actions to achieve change
- Service action: shifting the usual way of doing things, the cultures we foster, the assumptions we make and the stories we tell
- Leadership action: demonstrating leadership commitment and action and building leadership capacity in teams
- Systems level action: refocusing policies, resources, education and employment opportunities and structures.
Build a culture of partnership between people with lived experience of suicide and CRESP. Use the understanding gained to create a framework for lived experience in all CRESP research.
Members of the CRESP Lived Experience Advisory Group and CRESP staff developed a participatory plan to foster a genuine ‘partnership, not just participation’ to inform culture change.
A workshop, held in small groups, built participants’ understanding of each other’s views and their engagement with new perspectives.
Participants shared their vision of how lived experience would be integrated into CRESP research and reflected on the personal and resource contributions that would be needed for its success.
15 CRESP research and corporate staff, a lived experience participation manager, nine people with lived experience of suicide, a Mental Health Commission Policy Officer, and a facilitator participated in the workshop.
- Evaluation at the close of the workshop, via an electronic survey, consisted of multiple-choice and open-ended questions. This feedback is noted in the Outcomes section.
- A report capturing an analysis of feedback, workshop content, and identification of key themes and recommendations has also been prepared.
- Improvement in CRESP team members’ understanding of and valuing of lived experience insights
- Participants gained an understanding of the culture necessary to embed lived experience partnerships into research
- The workshop connected researchers and people with lived experience of mental health issues together to work collaboratively
- The capacity of people with lived experience to contribute in a research setting was enhanced.
Key learnings for the organisers:
- Set realistic expectations: this project is part of a larger journey, this meant that the language, content and format were suited to this early stage in the journey towards genuine partnership not just participation
- Involve everyone: CRESP included 11 research and four corporate team representatives, a participation manager with lived experience and one Mental Health Commission staff member
- Provide support for people to participate safely. This could be through promoting wellbeing management (before, during and after a workshop). A quiet space and a support person was provided during the workshop and follow up occurred with participants after the workshop was completed
- Manage group dynamics: use a professional external facilitator
- Maintain equality: establish a culture where everyone is treated the same regardless of the perspective they bring
- Lived experience is valuable expertise and people should be remunerated for their time.
Benefits facilitated by the design of the project:
- Involving people across key teams allowed for better understanding of how culture change could be beneficial to each part of the organisation.
Challenges to the project:
- Short timeframe: more time would allow a more open recruitment process. Had to use the expertise of people with lived experience who were already connected to CRESP or CRESP networks
- An open recruitment process would promote transparency, engage people of diverse backgrounds or people who are harder to reach and bring discussion from ‘new voices’
- Location: the workshop was held onsite due to venue costs. If a community setting was used it could help staff ‘switch off’ from work responsibilities
- Ratio of CRESP staff and people with lived experience: due to budget limitations an equal ratio was not possible; equal numbers could help with power imbalances and diversify perspectives.
How can this project approach be used by other organisations:
- CRESP noted its project could show how to measure, envision and deliberately evolve culture as needed across the mental health sector, suicide prevention interventions and peer support.
1. Internally approve a Lived Experience Framework workshop evaluation, key themes and recommendations report, to be published at https://blackdoginstitute.org.au/research/cresp/
2. Create a website to communicate the role of people with lived experience in CRESP: https://blackdoginstitute.org.au/research/cresp/lived-experience-resourc...
3. Develop and implement a dedicated CRESP Lived Experience Framework (including change management strategy) to guide the involvement of people with lived experience at all levels of the organisation and in all stages of research
4. Develop and implement an evaluation framework to monitor and assess the impact of lived experience engagement in CRESP
5. Review key policies and processes (e.g. paid participation policy, budgeting processes, training and development) to ensure alignment with a culture of partnership
6. Create ongoing opportunities for people with lived experience to get involved in CRESP activities.
1. Building a Culture of Partnership Between Research and Lived Experience in Suicide Prevention Project report.