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Explanatory Notes

Preliminary Stage: Preparing for public contributor involvement in research


Identifying public contributors for involvement

This might take time. Consider why and how you would like to involve people in your research. Seek one or two public contributors who you can access easily that have insight into the topic e.g. a patient, relative or neighbour of yours. Locate and approach existing groups e.g. Stroke Association, local stroke groups, Speakeasy and seek their help. Be aware some may charge for access to members for research. Work with a contact e.g. a practitioner who has access to the population you are interested in. Work with public contributors to locate others, especially if difficult to locate, e.g. by adverts in places that will reach your intended audience, word of mouth and association. Provide information for public contributors on the opportunities for involvement and what skills and experience you are looking for. Use plain language in all communications.

Recruiting two public contributors to a role can offer peer support in contributing to tasks and meetings. There's less pressure on a single individual and any time 'off' can be covered with little disruption. Pairing a more and less experienced public contributors together helps capacity building. It also gives the team a 'fresh' view alongside a post holder more familiar with the research process. Two contributors of course also bring twice the experience and expertise.

Payment

The minimum wage rate applies to recognition payments for public contributors. Organisational processes will need to be followed when making payments, which may mean paying monthly and in arrears. Payments received may also be liable for tax. Making and receiving payments can be a complex issue especially when people are in receipt of welfare benefits or tax credits. In these cases, the person should notify the Jobcentre Plus their intention to take up involvement activities and seek advice on how any payments, whether for their time or reimbursement of expenses, may affect their benefits.

There is information on payments on the NIHR website. The NIHR has produced guidance on rates of payment and reimbursement for involvement activities.

Additionally, the NIHR has produced guidance for members of the public.

Public contributors should be informed what payment is available for each piece of work at the point the opportunity is offered to them. The contributor can then choose whether to accept the opportunity with all the information about the role and payment. It can take time to set public contributors up on the local payment systems so check the process early. Once an activity has taken place and payments are submitted, ensure the public contributor knows when to expect payment and has a contact to follow up with in case of delays.

Ending the Project

Be aware at the outset of the need to seek/create opportunities for public contributors to go on to other activities beyond the lifetime of the project, which may or may not be research, should they wish. Especially after a long project, strong relationships and friendships may have formed, public contributors have invested time and energy and so a staged and/or supported withdrawal needs planning. Consider a final event, celebration or debriefing and also ask public contributors about this issue. Seek local and national opportunities for further involvement in research e.g. locally through your own department/centre/research contacts; regionally via NIHR RDS and nationally at 'People in Research'.

Involve public contributors in discussing their motivations for being involved and planning what support they'd like from the team. This is a two-way relationship and they may like to build their skills, CV, networks or knowledge. Work alongside public contributors to achieve their aims throughout, which can form part of any 'exit plan' to support them at project close.

Evaluating Involvement

Plan ways of evaluating the user involvement within your project, does it work, in what circumstances, how do you know? Find ways to share your learning e.g. presentations, a section in your final report, share with organisations such as NIHR Centre for Engagement and Dissemination who have an interest in developing the evidence base for public involvement.

Involve public contributors throughout in evaluating their experience of being involved in the research.