National Institute for Health Research (NIHR) Cancer Research Network (NCRN): Support for lay members of the Consumer Liaison Group and Clinical Studies Groups

Summary
Part of the work of the National Institute for Health Research (NIHR) Cancer Research Network (NCRN) is to support the running of 22 Clinical Studies Groups whose role is to oversee the development of clinical trials as part of the NIHR Research Portfolio in the UK. Each Clinical Studies Group has two lay members working alongside researchers as part of each. Peer support for their roles is provided through their membership of the Consumer Liaison Group (CLG).

As part of the NIHR Clinical Research Networks’ Patient and Public Involvement (PPI) Programme, the NCRN Coordinating Centre offers a package of support for lay members involved in the Consumer Liaison Group and Clinical Studies Groups. Some of the ways in which they do this include coordinating an email group, encouraging peer mentoring between new and existing members; as well as pairing lay members with a scientific mentor to assist with matters associated with their Clinical Studies Group.

1. Email group

The email group is coordinated by the NCRN PPI Lead through the University of Leeds JISC mail service (a group email facility). It has nearly 100 members in total, about 15 of whom are research staff. Although it is overseen by the Coordinating Centre, the email group is largely self managed.

What is the email group for?

The email group is intended primarily as a communications tool, to notify people about meetings, to share policy and best practice guidance, and generally for keeping people in touch, informed and updated. People can get advice and help through this group; for example there is a thread running at the moment on definitions and understandings of rarer cancers. If people are to present on behalf of the group, they can ask for help and advice and will sometimes work together on presentations. Sometimes requests come from research teams across the country for members of the public to be involved in their research.

The email group is primarily intended for support in relation to lay people’s roles as members of the Consumer Liaison Group and Clinical Studies Groups. Support for wider issues is encouraged to take place through other channels, for example through personal contacts and emails.

Training in use of the email group

The use of the email group is introduced as part of routine induction training. Guidance is given to people on how to use it, how to word things, how to use headers to alert people to the purpose of a message, when to use ‘reply to all’, and how to give clear information, for example about deadlines.

Have you evaluated the email group?

The email group has not been formally evaluated but it is active and well used, suggesting that people find it useful. People will often mention that it is helpful when they attend meetings of the Consumer Liaison Group.

2. Peer mentoring

The NCRN encourages all of its lay members to support each other through a system of peer mentoring. New members are put in touch with existing members, as part of induction training and through regular attendance at CLG meetings, in order to learn from each other. Consumer Liaison Group members have access to a contact list to support ongoing communications with each other too.

Peer support is embedded in the role profile for lay membership of the Clinical Studies Groups and Consumer Liaison Group. As part of this, lay members are strongly encouraged to keep in touch with and support each other for advice, information and problem-solving; this takes place by email and for some via face-to-face and telephone contact.

There is an item on PPI at every Clinical Studies Group meeting. Some new members may be unsure how to use that slot; more experienced members can help with this and give examples of how they have used it. They can work together so that they do not feel so isolated.

Have you evaluated peer mentoring?

Informally, the NCRN asks people at meetings how it is going. They also carry out an annual survey to ensure that they get feedback on the views and experiences of lay members, including experiences of peer and scientific mentorship. The results help the NCRN PPI Lead to work with others to improve things. The mentoring is largely seen as positive – some use it a lot, others less so. However, as an overall indicator of the Consumer Liaison Group’s popularity with members, nearly all lay members opt to extend their membership after the initial three years.

3. Scientific mentoring

Each lay member also has a scientific mentor, who is a member of their Clinical Studies Group. Clinical Studies Group Chairs work through the PPI Lead to ensure that scientific mentors are identified for each new lay member joining the Group, helping them to more easily navigate the information discussed at meetings. The Clinical Studies Group Chairs are directly involved in recruiting new lay members and so are aware of the skills and expertise they can bring, which in turn helps them to identify appropriate scientific mentors.

Have you evaluated scientific mentoring?

This scheme has not been formally evaluated. It has been found to work well for the majority but for some the arrangement does not always work as well as expected. To some extent this depends on the personalities and skills of the people involved as well as the time they have to devote to this activity.

Plans for the future

The NCRN are planning to do further work with the Clinical Studies Groups, through their Chairs, scientific and peer mentors to see what further support may be needed to ensure the groups make best use of PPI and that lay members feel supported in their roles.

As a starting point, the plan is to work with Clinical Studies Group Chairs to encourage further focus on giving everyone an opportunity to speak, listening to people, and ensuring that new members are introduced.

Contact for more information:

Karen Inns, Patient and Public Involvement Lead, National Institute for Health Research Cancer Research Network (NCRN)
Tel: 0113 343 2254
Email: k.inns@ncrn.org.uk

May 2012