How to recruit and support local people to be part of your programme or project – including people with lived experience.
Considerations for using this approach
- Accountability and co-design – inviting local people including those with lived experience into the governance of your projects and programmes and/or onto a specific lived experience group has many benefits, including increased accountability to local people, hearing directly from recipients of the services you are looking to change and co-designing solutions together. However, individuals must be adequately supported – and the approach requires teams to you to adapt the way they work – it is not a tick box and should not be viewed as an easy way to engage.
- Small sample size – people with lived experience can only represent their own views and experiences (and wider reflections if they are part of a group or network and are actively encouraged to seek views from these contacts) and cannot be expected to comment on behalf of entire patient or resident populations/community groups. They may have their own perspectives, based on their own backgrounds. So, it is important to consider this as part of your recruitment processes.
- Consider broader engagement work – make sure you have considered whether there may be alternative and complementary methods of engagement that can support your project/ programme of work.
Key elements of implementation
- Type of opportunity – before recruiting someone to attend key meetings, consider what ongoing involvement might be needed. Types of roles to consider include: one-off or short term, including attending key meetings; ongoing, including participating in a regular meeting; working in an advisory capacity or part of the decision-making process. Consider what someone’s participation will entail and influence, including whether the voice of those with lived experience carry equal weight in any decision making processes.
- Considering who to involve – for example individuals bringing their own experience and views, people from and representing a community group or voluntary organisation, or users of particular services. We recommend having at least two people, as well as deputies, with lived experience working with you. This creates mutual support, ensures consistency of participation and continuity if one person is unable to participate occasionally. Having only one individual involved can cause isolation and may seem tokenistic.
- Recruitment – involving small numbers of people with lived experience cannot represent the views of whole communities but, through your recruitment process, you can be mindful of the range of experiences and backgrounds different applicants might bring to your work. If recruiting people with lived experience, we recommend creating a role outline, application form and selection process – and advertising the opportunity as widely as possible.
Support for the individual
In addition to setting out a clear role outline, it’s important that people with lived experience are supported to participate.
- Training and induction: Provide a general induction to the programme and to the specific work people will be involved in. This will help familiarise them with their role, project vision, activities to date, key terms and documentation. Induction should include an opportunity to meet key people, understand each other’s roles and ask questions before the first meeting. Consider if any mandatory training is required/ if they need to complete a register of interests form – for example if they will be involved in procurement, do they need training on any computer systems to access documents and score bids.
- Chairing during meetings: The meeting Chair should involve those with lived experience and give them space to share views, ideas and provide challenge. At their first meeting, participants should be introduced and welcomed. To help manage time and contributions, you may want to consider having a specific slot on the agenda for those with lived experience and/or encouraging participants to co-design the agenda with you.
- Briefings and de-briefing: These should be offered before meetings (to prepare people with lived experience to ask any clarifying questions) as well as after, to discuss how things went, whether they felt able to contribute and how working together could be improved for next time. Outside perspective is one of the benefits of involving someone – but consider what information someone might need about how the NHS works to fully contribute to discussions.
- Logistics: Plan meeting days/times well in advance, or in collaboration with those who have lived experience. Ensure papers are received with enough time for people to read and absorb the key points. Participants may be comfortable reading documents on screen, but be prepared to provide printed copies if needed/ reimburse the cost of printing.
- Jargon busters: jargon and acronyms should be avoided as much as possible but a glossary of terms for easy reference can be useful
- Valuing people’s time: reimbursement of out-of-pocket expenses and other payments: seek advice from your engagement team/ use appropriate recognition policy or guidelines on incentive payments for involving people with lived experience.
- Contact person: there should be one named contact for any queries or concerns that arise before sessions / between meetings.
- Regular review: Take time to regularly review what is working well and what could be improved (from everyone’s perspective) so that any adjustments can be made.