“I joined to help make the local service better, I stayed because it was interesting” – patient group participant.

We often get asked about setting up service user/patient groups and networks to help with improvement. A group is one way to gain service experience insight and help with key decisions as part of improvement work. A group can also be a useful way for people who are helping a variety of improvement projects to meet, share information and support each other. Groups can be great for members and the improvement programmes they support, but it is also important to acknowledge and plan for their known limitations. People are giving up valuable free time to join a group and need it to be meaningful and effective.

1  Ensure clarity of purpose.

  • Consider carefully what the group will be for.
  • There are many ways to bring people together and the reason you need a group determines the form and function.
  • Be honest about purpose before committing, it takes a great deal of resource to set up, run and maintain a group or network.
  • Having a group does not mean that you stop other patient participation and co-design activities, it compliments those activities rather than replaces them.
  • Be clear on member benefits – such as access to research, networks, new skills, payment etc.

2  Approach group design from the perspective of the members.

  • Co-design the group with potential members, talk to staff and patients and explore what is needed.
  • From the above discussion you can start to think about your group form and size, how many meetings and activities you need etc.
  • Consider how to be inclusive, ask – “Who might be left out and how can we include them?”

3   Identify some core principles.

  • Facilitate a member-led process.
  • Describe how your organisation will work with the group and how you expect them to work with you.
  • Create a space for more equal partnerships between health service professionals and the public.
  • Carefully consider how to communicate, where and when it is best to hold meetings.
  • Think beyond the meeting and provide a range of ways to participate.

4  Get the name right.

  • The name needs to describe what the group will achieve rather than how it will work or who is in it.
  • Make it sound enjoyable, interesting and meaningful.

5  Think about the resources needed.

  • Consider secretariat, refreshments, expenses, meeting venues etc.
  • Ensure that people are rewarded for their contribution (monetary, reimbursement, training, access to research etc.)
  • Have expense/payment forms ready and make it a private affair. Not everyone will want to claim. Make a commitment to and plan how you will reimburse/pay quickly.
  • Check whether members are happy for their contact details to be shared, for group emails, or not?

6 Recruitment.

You have a choice between nominated/volunteers and a more formal application and selection process. Whatever you choose, you need to make some decisions about:

  • Draft terms of reference (that the group can then influence).
  • Group member role description.
  • Payment/reimbursement policy and procedures.
  • A service user/patient chair.
  • Training and development needs.

7 The Group Launch.

  • Experience has shown that it’s good to have an informal gathering for the first meeting.
  • Go over the top to make group members feel welcome and valued.
  • Give space for people to get to know each other, tell their story and talk about why they want to contribute to the group.
  • Provide food and drink and time for informal chatting.
  • Invite guests from your organisation/service to meet the group.
  • Share some information on the context, your improvement work and why this group can help.
  • Make it clear that you will all be learning, that there are decisions they can influence and some things that are fixed, but that you will do your best to be open with them.
  • Be honest about the need for flexibility, talk about the concept of change and your organisational values.
  • You will probably want to have something about behaviours/ways of working –start with some ideas of your own and ask the group members to contribute.
  • Ask members about their information/development needs.
  • Plan dates/times for future meetings and locations.
  • Ask for some feedback at the end of the first meeting.

Please get in touch if you are setting up a group and would like some examples of adverts, application forms, role descriptions, payment/reimbursement policies, learning programmes and interview questions.