These are exciting times for INVOLVE with work focusing on three National Leadership Areas (Learning and Development, Diversity and Inclusion, Community & Partnerships), as identified by Going the Extra Mile (2015). INVOLVE will provide coordination and leadership and work with stakeholders to identify and prioritise key objectives for the next three years.

Also, our new partnership with the Research Design Services is starting to take shape and through that partnership working we are now working collaboratively to support the development and co-ordination of effective regional PPI networks which make best use of effort and resources increasing regional to local connectivity to extend and deepen public and patient involvement (PPI).

A group of organisations in the South East have been successful in securing funding from the Sussex based charity Rockinghorse to establish a Children and Young Persons’ Patient & Public Involvement (PPI) Group (C&YPG). Working in partnership were Research Design Service South East, INVOLVE, Clinical Research Network Kent Surrey Sussex, Sussex Community Foundation NHS Trust, Brighton & Sussex University Hospital Trust, Brighton & Sussex Medical School and the University of Brighton.

The (C&YPG) seeks to ensure that health and social care research and services in the South East are informed by the needs and views of children and young people (C&YP). This will be achieved by promoting and encouraging the effective involvement, participation and engagement of C&YP in health and social care research in the South East region of Kent, Surrey and Sussex.

For further information please contact:

Duncan Barron, Senior Research Fellow

Patient & Public Involvement (PPI) Lead, NIHR Research Design Service South East & Brighton & Sussex University Hospital Trust (BSUH), University of Brighton, Centre for Health Research, Mayfield House (Room 262), Falmer BN1 9PH

t: 01273-644109 m:07969 687 934

Learning and Development 

Learning and development opportunities for public involvement exist for members of the public, for researchers and for public involvement managers. Despite this, in 2015 both the Going the Extra Mile report and the recommendations of an NIHR-wide Learning & Development Working Group highlighted the need for better coordination, improved methods of identifying individual’s learning and development needs, and wider access to existing opportunities.

We are taking a learner-centred focus, ensuring that any tools and systems developed work from everyone’s perspective. A broad Project Group will be formed to advise and guide developments, and to help deliver this programme.

We will work with partner organisations to develop systems that improve the coordination existing opportunities and encourage collaboration where this has benefits, enabling the sharing of tools and materials that support learning and development, especially in identifying training needs to support individuals in their role. We will try to make sure that a wide range of learning methods are available.

We know that success can only be achieved by working with members of the public, researchers and partner organisations who will use, deliver and evaluate these tools and systems. We will seek input from a range of NIHR and external partners working in this area, as well as members of the public and those with training expertise.

Diversity and Inclusion

We are looking to develop methods and resources to support more diverse, representative and proportional involvement in research and the broader health and social care system. We have formed a working group which includes public members and experts in the field of diversity and inclusion. They have developed an action plan, which will continually evolve, and is aligned with INVOLVE’s Values and principles framework and will interlink with the other work programmes.

Through the course of this work we will be building on and updating the resources that INVOLVE has already developed: Strategies for diversity and inclusion in public involvement in research and Diversity and inclusion: What is it about and why is it important for public involvement in research.

Regional Networking (Led by Gary Hickey, Paula WrayMartin Lodemore and Kate Sonpal, Senior Public Involvement Managers)

Many existing local networks and partnerships provide a range of benefits, including local support, sharing of good practice and encouraging collaborations. These networks
vary in their aims, their methods and their membership, often governed by regional structures. Working with our RDS partners we aim to develop a unique project plan for eRDS Areas Map v2ach RDS region, to support the development of networks that address local issues and are sustainable. Areas covered by each Senior Public Involvement Manager are shown on the map.

The INVOLVE-RDS Partnership will explore and support existing networks and forums in each of the 10 RDS regions, and create new networks where none exist. Links will be created to and from the regional networks to the national agenda, through the INVOLVE-RDS Partnership. Sustainable funding models for local networks will be explored, as no central funding will be provided by the INVOLVE-RDS Partnership. Geographic and demographic inclusion will be assessed to improve each network’s reach. New partners may be approached, where this is considered to be of benefit to the network. Benefits for all partners will be explored to ensure sustainable models are developed for each network.  It is anticipated that each region will have a unique make-up and its own set of challenges, generated by local issues and needs. The INVOLVE-RDS Partnership will therefore have a flexible approach to each area, ensuring that local researchers, partner organisations and communities benefits from working collaboratively.


INVOLVE are leading on an NIHR wide project looking at how co-production could be used to improve public involvement in research.

There is no single definition of co-production, which is usually associated with service design and improvement, and it is not clear how it ‘fits’ with public involvement in research.

This project will bring together various parts of the NIHR and members of the public to explore these issues, and to look at existing literature. There will be a round table discussion and consensus workshop and recommendations will be made on whether and how the NIHR can use the principles of co-production in its culture, processes and procedures.

Public Information Pack (PIP) updates

One of INVOLVE’s most popular information booklets is our Public Information Pack (PIP) which gives information and advice for getting actively involved in NHS, public health and social care research.

Currently we are reviewing booklets 1 and 2 and looking to bring them up to date with new examples and a fresher feel.

For further information please contact