Setting up a patient user group

St George’s recognises the important work of patient user groups across the Trust and we are keen to encourage and support you to form a group in your clinical area.

We have developed this short guide on how to set up a patient user group, including information on considering the purpose and aims of your group and on how to form it.

On this page you can find more detailed guidance and documents which will help you to set up your group.

Getting started: suggestions for issues the group could consider including ground rules, monitoring and evaluation

Here are some suggestions for issues your user group should consider as early as possible:

  • Terms of reference: go through them and ensure that everyone is clear and agreed. You can find guidance on developing the Terms of Reference for your group here.
  • To start, design a membership form that collects contact details and a signed permission to use that data to communicate with the membership.
  • Ground rules – see here for some examples
  • Format of meetings (day/date/time place/how remote meetings will work if necessary)
  • Administration: production of minutes, who will circulate papers and when, how to submit agenda items/papers
  • Budget – is there any resource eg for promotional activities, refreshments? What might you need?
  • Expenses and travel policy
  • Health/safety and any other support needed eg translation, hearing loops, resources for visual impairment, wheelchair, or other access issues
  • Communications and permissions to use data. Who has access to what data? Service users and carers may wish to give their permission to communicate independently of the Trust. Official communications will need to follow Trust IT and data protection protocols. Where groups operate remotely, what software will be used and is it accessible?
  • Promotion: how and where will you promote the group and talk about what it is doing? NB: minutes from the group meetings should be posted on the Trust website. How will you celebrate achievements and let other users know about the issues discussed?
  • Specific aims and timescales
  • Priorities for attention
  • An action plan with names and timescales

Monitoring and evaluation

It is helpful to consider how you will monitor and evaluate your work from the beginning. What will success look like? It is good practice also to consider how often and how you will review areas such as:

  • Membership
  • Equal opportunities/diverse representation
  • Access to the group
  • Terms of Reference
  • Information and communications

Running the group: how to communicate about your group and promote it

Members should agree how and where to promote the group. The Patient partnership Coordinator and the Trust communications department may be able to help. Once established, the group will appear on the Trust’s “map of Patient Partnership Groups” visible on internal and external websites.

It may be helpful to set up a wider database of patients and carers interested in the same clinical area. This will help you to canvass a broad range of views and to publicise events and developments to more patients and carers. These people might, for example:

  • Receive a newsletter
  • Take part in surveys
  • Attend open days or events
    Take part in research
  • Do other voluntary work within the Trust eg ward accreditation
  • Become members of the user group later

Useful resources and further guidance