Please note that benefits guidance and tax legislation been subject to considerable change/reinterpretation since 2019. Any INVOLVE documents referring to the payment of involvement fees may now be out of date and are pending a review during 2020. INVOLVE’s guidance should not be substituted for professional advice, and INVOLVE accepts no liability for decisions or actions taken as a result of its guidance. You are always recommended to take your own tax, finance or legal advice.

Welfare benefits regulations can be complicated. These updates offer guidance on some recent changes to the regulations that may affect people who are offered payment for public involvement in research while receiving welfare benefits.

Pages: 5

This statement has been developed by the Health Research Authority (HRA) and INVOLVE for researchers who will be submitting applications for ethical review to provide clarity and guidance on public involvement in research and the requirements of Research Ethics Committee (REC) review.

Children and young people involved in research should receive appropriate reward and recognition for their contributions. This demonstrates the value that you place on their time, commitment and expertise when involved in your research activities. Many of the things to consider when involving adults also apply when involving children and young people; however there are other specific issues that you should think about when planning involvement that includes young people.

Examples of work to support public involvement in research at a local and regional level are increasing. In many areas, research forums or networks have been established which span different parts of the National Institute for Health Research (NIHR) and include partner organisations. The approaches and models adopted vary, as does the management of information and resources. Aims may include coordinated strategic planning, pooling of resources and expertise, shared learning, and support between those who carry out patient and public involvement roles.

The Research Design Services (RDS) are currently mapping their links with local and regional networks. To complement this work, INVOLVE commissioned the development of examples of existing regional networks that are supporting public involvement in research, to explore the characteristics of successful collaborations and to highlight some of the lessons learnt in developing and maintaining these initiatives.
The aim was to inform discussions on how INVOLVE and the NIHR can best support and develop regional partnerships and their strategic coordination. It is hoped that this will support locally inspired collaborations, in line with the Going the Extra Mile1 report recommendations from the Breaking Boundaries strategic review of public involvement in the NIHR. The report emphasises the importance of locally driven work that is strategically consistent with the NIHR’s overall goals, specifically recommending the development of regional public involvement partnerships within and beyond the NIHR’s boundaries.

This report has been written by Katherine Cowan, an independent consultant commissioned by the INVOLVE Coordinating Centre, drawing on information provided by members of the three networks included as examples.
This report is not intended to provide a critical review of existing regional networks, but to explore the characteristics of a limited number of established collaborations, in full knowledge that other models exist and flourish.

No. of Pages:25

This is a short overview of the key issues on involving children and young people in NHS, public health and social care research. These have been developed by INVOLVE in response to requests from researchers for practical information on what they need to consider when involving children and young people in research.

The purpose of this document is to highlight:

• top tips for researchers ranked by children and young people
• practical and essential information on how to plan to involve children and young people in research
• where to go for more detailed guidance and other resources.

The information was developed by reviewing existing information and guidance on involving children and young people in research. It is not intended as a comprehensive handbook or manual. The top tips were developed by selecting those that focused on the practicalities and asking children and people involved in research to identify which ones they thought were most important and if anything was missing.

Many researchers understand the value of involving children and young people in NHS, public health and social care research, but are unsure how to go about it.

These tips were developed by:

• reviewing existing information and guidance on involving children and young people in research
• selecting those that were relevant to ‘how’ you involve children and young people
• asking children and young people involved in research to identify which ones they thought were most important and if anything was missing.

More detailed practical guidance including essential requirements for good practice such as safeguarding, legal and ethical requirements, alongside further reading and resources can be found in a related document Involving children and young people in research: top tips and essential key issues for researchers 2016

PIP 1: So what is it all about?
PIP 2: Getting started
PIP 4: Jargon buster

No. of pages: 20

The Public Information pack (PIP) is made up of four booklets and is for members of the public who are interested in getting involved in NHS, public health and social care research. The booklets have been produced by INVOLVE with support and advice from members of the public to help us ensure we cover the kind of information people need, when first getting involved in research.

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The purpose of this work is to develop a framework of good practice for public involvement in research. It is intended that this framework is a living document that will continually evolve over time and be useful for reporting public involvement in research as well as for assessing the quality of involvement.

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This document lays out our internal policy and procedures for payments and expenses for members of the public involved with our work, including INVOLVE Group members. The policy explains when and how payments will be made and expenses covered. These procedures are specific to INVOLVE and our organisation. Others may find the information in the policy useful in order to develop a policy relevant to their organisation.

No. of pages: 19