Is this the best approach?
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, supporting people can be resource intensive and require you to be ready to change the way you and the rest of your team work. It is not a tick box or an easy solution.
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.
Make sure you have considered whether there may be alternative and complementary methods of engagement that can support your project/ programme of work. Ensure you have discussed whether this is budget available to remunerate people for their time. More information on valuing voices can be found below.
What kind of involvement opportunity is this?
- One-off or short term – i.e. a task and finish group or a sub-group within a project, focussed specifically on understanding people’s experiences
- Ongoing – i.e. participating in a steering group meeting or board
- Working in an advisory capacity or as part of decision-making processes
Do the voices of those with lived experience carry equal weight to professional view/vote, or not?
There are no right answers here. But it’s important to be clear with people what their participation will entail and influence.
Who do you want to involve?
Consider who you want to involve.
Is it:
- People recruited from and representing a group?
- Individuals bringing their own experience and views?
- Users of particular services?
- Carers?
- Members of the public?
- Residents of particular areas or people who have particular characteristics (eg age, gender)?
It is always recommended to have 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. Having an odd number can be helpful if users share a “vote” or are working together to reach a score they agree on, e.g., procurement panels.
If aspiring to co-design and co-produce, consider equal numbers of ‘users’ and professionals.