Delivering involvement: establishing a user group

It is worth setting a workplan for the group and agreeing priorities for action requires negotiation between all the stakeholders involved, based on a balance of the organisation’s and the members’ priorities. For users’ views to meaningfully influence service development and delivery, they need to input into whichever strategic decisions are being made, wherever they are being made. Negotiation is required to identify where the users’ and organisations’ priorities overlap and where involvement will make a difference.

For example, does the organisation want involvement in the design of a new diabetes pathway? Is there a problem in a specific area, eg retinal screening? You will need to understand the priority issues for the group members and the issues that they want to see change.

A critical role is listening and taking messages backwards and forwards – almost acting as a conduit between the various partners and organisations…it’s about managing expectations among the various stakeholders as to what we’re going to do as a result of this user involvement work and how it fits with the bigger picture… which is maybe why we can’t do x, y and z – but we need to do a, b and c – even though they don’t think that’s a priority.
Carol Cottingham, Senior manager Lincs

The key decision-making processes also need to be mapped across organisational structures to ensure users’ views are feeding in at the right places, to the right people and at the right time. The final workplan needs to include a shared agreement about priorities for action and a clear timetable for the user group’s activity.

You could:

• brief the user group so they are aware of the wider context and the ‘live’ issues locally
• ask users to look at the organisation’s plans and to think about which areas they would like to work on and where they think they could have the greatest influence
• manage expectations – being clear where there are constraints on the organisation that will limit its capacity to respond to users’ views.

The agenda for your future meetings will be set by your workplan. The work plan will need to be updated as projects are completed and will need to change over time to reflect new and changing circumstances. Therefore regular reviews of the plan need to be scheduled as part of the project planning.

Read an Example user group workplan (PDF) 71KB from the Hammersmith and Fulham Diabetes User Group.

Adrian Mayers (NHS Hammersmith and Fulham Head of Long Term Conditions Commissioning) explains how the user group are influencing the service redesign.

Christine Mead (NHS Hammersmith and Fulham Senior Public Health Manager) explains the depth of information required for user groups.