Case studies: examples of Public Involvement and Community Engagement (PICE) in the North East and North Cumbria

NIHR Clinical Research Network North East and North Cumbria (LCRN NENC) provides the infrastructure to allow high-quality health and social research to take place across the region. The vision is to improve health and care outcomes for the people of the North East and North Cumbria through research. While acknowledging the above issues relating to the social and economic geography of the region, a key strategic theme for CRN is that of Targeting Health Needs. This strategic theme aims to enhance the links between the region’s population, communities, users of local healthcare and other services and research, improving access and opportunities for research in particular in underserved and marginalised populations, groups and geographies.

This published report summarises the context for the Targeting Health Needs strategic theme and outlines 'next steps' and future projects. The following document gives supporting examples of good practice to feed into the strategic theme.

Context

As has been mentioned in the above report, Patient Involvement and Community Engagement (PICE) in research is an area of significant existing interest in the North East and North Cumbria, with much progress in recent years. NIHR promotes an approach which now sees PICE in research design as key to successful grant funding applications and has invested significantly in initiatives to enhance this, for example via the Research Design Service. In developing this report, we engaged with a range of stakeholders from NIHR, universities, communities, VCSE and the NHS to understand existing work in the region and to better understand the landscape. In the course of these conversations, the team identified a range of excellent examples, which demonstrate how to do involvement and engagement well.

We present here five case studies which detail some of the existing work to increase community engagement in research across NENC. The first two cases studies (Creating Connections Network and the Applied Research Collaboration’s Public Advisory Networks) highlight the integration of involvement and engagement focused networks across the region, demonstrating how this has been of benefit to community involvement in research. The latter three cases studies (Multiverse Lab, Developing VCSE/Researcher partnerships for impact and sustainability, Public involvement and co-production research training) highlight innovative approaches to developing models of community involvement in research and building research capacity within underserved groups.

Developing opportunities for collaboration and shared learning: Creating Connections Network

There are a number of organisations, both internal and external to the regional NIHR infrastructure, that aim to work alongside members of the public and community organisations to increase community engagement in research. As such, it is necessary to develop opportunities for collaboration and shared learning across groups, to reduce the risks of working in silo and duplication of effort.

The Creating Connections network brings together those, across the region, who are interested and have a role in public involvement and engagement. The core network is chaired by Dr Jo Lally within the NENC Research Design Service (RDS) consisting of those who have a lead role in public involvement and community engagement across the NENC NIHR infrastructure, local institutions, community organisations, patients and the public. There is also a broader network, chaired by Dr Felicity Shenton on behalf of the North East and North Cumbria ARC. This wider network is for anyone interested in public and community involvement and engagement.

The network currently receives administrative support from NENC RDS and host regular meetings to share information about upcoming research projects, best practice and training. In addition, all members can join a mailing list advertising opportunities for involvement and engagement across a range of research organisations, which can then be cascaded down into individual patient networks.

“As somebody relatively new to Patient and Public Involvement and Engagement, I have found the support provided by the network to be extremely useful. Each member in their own right is a fount of knowledge”.

- Ben Porter, PPIE Manager NIHR Newcastle Biomedical Research Centre and Creating Connections member

These activities encourage and support integration of PICE networks across the North East and North Cumbria, which in turn has led to connections with a range of different communities across the region and capacity-building through increased training opportunities. An Equality, Diversity and Inclusion Training Sub-Group, chaired by Dr Felicity Shenton, co-ordinates this training. This includes Trans Awareness Training, Jewish Cultural Awareness training and core members working alongside Connected Voice to deliver a cultural competency training programme in relation to working with ethnically minoritized communities. As of August 2021, the network have also launched a series of co-delivered, ‘bitesize’ training videos and 1 hour training sessions for both the public and professionals covering 1) public involvement and participation in research 2) how to identify, approach and engage patients and the public 3) research champions and participant experience 4) public engagement and feedback and 5) co-production. These training opportunities are possible through an agreement across the core group to jointly contribute to funding costs.

Building a community of research active citizens: North East and North Cumbria Applied Research Collaboration (ARC)’s Public Advisory Networks

The North East and North Cumbria ARC, aims to tackle the wide health and care inequalities in the region, with a vision to deliver “Better, fairer health and care at all ages and in all places”. As part of this, it is important to work alongside and include the perspectives and experiences of those who live within the region, to ensure that all ARC research reflects the priorities of, and is accessible to, local communities.

Building upon existing approaches to increase community involvement and engagement across NIHR infrastructure, the NENC ARC has established a Public Advisory Network (PAN) that includes individual members of the public and small community-based organisations that work with marginalised and underserved communities across the region. Initiated by Dr Felicity Shenton, ARC PICE manager, the PAN includes a diverse range of research related experience and was developed through existing service user groups and NIHR infrastructure organisations, personal networks/contacts and social media. The PAN meet on a quarterly basis and receive a weekly e-bulletin with updates on events, activities and upcoming opportunities for research involvement.

The PAN have a presence at ARC governance level and contribute to the identification of training needs, research priorities and funding decisions. For example, members of the ARC management team, PICE research theme leads and the PAN co-produced a strategy document to outline and support the operational and academic development of PICE activity across the lifespan of the ARC. Members of the PAN sit on the ARC Stakeholder and Executive Board and have recently been involved in reviewing funding bids for the ARC’s Open Funding Call.

“I can say my involvement has given my community the opportunity to add it’s voice to the general perception of how communities feel on decision making in relation to health and wellbeing. As individual, I feel to have equal opportunity within the group to influence decision makers to take in account different perspectives from people of different backgrounds on what matter to them”

- Gaby, PAN member

A Young Person’s Advisory Network (YPAN) is also currently in development to ensure that opportunities for research involvement and engagement extends to children and young people. Members of the YPAN were also recently involved in reviewing funding bids for the ARC’s Open Funding Call in topics that had relevance and interest to them.

“It has not only been something to do, but also something new and enjoyable. I have learnt so many new things, met some lovely new people, and have had so much fun taking part in the meetings (where I have learnt new skills, like how to analyse the forms) and also reviewing the [ARC Open Funding Call] forms - which were actually quite interesting.”

- Kai, YPAN member

Given the increased barriers to research involvement for those who are digitally excluded, lack confidence and/or resources to join large meetings the ARC’s PICE manager has also reached out to, and engaged with, specific communities including British Sign Language users, an African Community association, a Refugee and Asylum Seekers service and a regional Older People’s Forum, providing additional opportunities for research involvement and engagement.

Combined, these networks strengthen opportunities to engage with local communities, ensuring ARC activity is accessible and relevant to the local population. To date, these groups include representation from those living with disabilities, LGBTQ+, older people, military veterans, ethnically minoritized communities, rural and seaside communities, mental health service users, carers organisations, community groups, people who have experienced homelessness, domestic abuse & people with multiple and complex needs, young people, autistic people and care leavers. More information and resources related the NENC ARC’s public involvement and community engagement activity is available here.

Shaping the future of health and social care research: Multiverse Lab

The North East and North Cumbria region has broad and pervasive health inequalities which have been exacerbated by the recent COVID-19 pandemic. To address these inequalities it is important to understand the issues local communities are facing and identify areas where health and social care research can have real impact.

Multiverse Lab aims to identify the health and social care issues that matter the most to local communities by gathering the opinions of people across the region. This initiative offers an informal and interactive experience, allowing members of the public to share their views and answer the question “What is the health or social care breakthrough you hope to see in your lifetime?”. Multiverse Lab is a collaborative effort, delivered by Unfolding Theatre and commissioned and funded by a range of partners including VOICE, The National Innovation Centre for Ageing (NICA), NIHR Newcastle Biomedical Research Centre, NIHR Newcastle In Virto Diagnostics Co-operative, NIHR Newcastle Clinical Research Facility, NIHR Clinical Research Network Coordinating Centre Cluster (Newcastle), NENC ARC, Newcastle University and The Newcastle Hospitals NHS Foundation Trust.

Throughout the earlier stages of the COVID pandemic, members of the public were able to share their views through an interactive online platform. This platform includes a timeline showing 100+ years of health breakthroughs, ‘The Map of Now’ which allows users to explore some of the ongoing health research and inequalities in the region and an opportunity to hear the voices of others as well as providing their own. To increase accessibility of the website, culturally diverse online guides were built into the platform including a guide who uses British Sign Language, a young person, an Urdu speaker and an older person. Online drop-in sessions were also facilitated with specific under-served groups to help encourage their involvement.

“Multiverse Lab has been an exciting project for Unfolding Theatre. We were delighted to explore how the approach we developed in Multiverse Arcade could be adapted to gather people’s opinions about health research and have real impact. We are acutely aware of the health inequalities that exist in the North East. It is great to be part of a project that seeks to make under-represented voices heard and address the health issues that matter most to our communities.”

-Anne Rigby, Artistic Direction, Unfolding Theatre

During July 2021, Multiverse Lab also went ‘on tour’ with pop-up installations around the region including Great North Museum in Newcastle, Hetton Community Pool, Trinity Square in Gateshead, Workington Town Centre and Carlisle Old Town Hall. A further 8 venues were visited in late September and early October 2021, including both small and large community-based venues across Cramlington, Wooler, Gateshead and Sunderland.

As of January 2022, Multiverse Lab has reached over 3,000 people across the region. The most commonly talked about issues include cancer, mental health, dementia, equality and personalised treatment and care. Alongside these topics people also commonly referred to the impact of poverty on health. Access to diagnoses for long-term conditions, and research improving the quality of life and treatments for such conditions, were also regularly highlighted as a priority. Information collected from the initiative is currently being collated and project partners are considering how best to use this data to shape and inform future research priorities in the region.

“Now more than ever we need to find ways to involve the public in health research so that it responds to our changing health needs. The pandemic has brought health inequalities in our local communities into sharp focus. Multiverse Lab is just one of a number of ways we are reaching out to individuals and community groups to ensure health research responds to local health needs and interests. […] We hope the people that visit Multiverse Lab will not only enjoy the experience but also continue to work with researchers by signing up to VOICE (a network of people right across the UK interested in supporting health research) and join us in delivering local health research that makes a lasting difference to all our health and wellbeing.”

-Professor Lynne Corner, Patient and Public Involvement Director, NIHR Newcastle Biomedical Research Centre and VOICE

Developing VCSE/Research partnerships for impact and sustainability: Co-developing a model of commissioning Patient and Public Involvement and Engagement (PPIE)

There are clear challenges to developing diverse community engagement. Underserved and marginalised groups are often excluded from traditional approaches to involving patients and the public in research. VCSE organisations are often asked to facilitate PPIE in research on a goodwill basis yet may struggle to support these requests due to time and financial constraints.

Lead by Dr Susan Moloney, PPIE-lead for NIHR School for Primary Care Research, this project aimed to co-develop a feasible, sustainable model of commissioning engagement and involvement of diverse, under-represented patient and public groups in research. This model refers to a process whereby VCSE organisations are engaged to conduct public involvement work in partnership with a research organisation, and for a fee.

Through existing networks, flyers and inviting expressions of interest, VCSE networks were contacted and asked if they would like to be involved in the development of this model. Smaller, remote and seldom-heard groups were purposively selected and given a stipend to support ongoing involvement. The resulting Commissioning PPIE in Research Collaborative consisted of a diverse group of 13 VCSE sector organisations, health and social care researchers, and research support staff from a range of NIHR funded infrastructure organisations. Following online surveys, to explore views towards commissioning PPIE, four online co-development workshops were held across late 2020-early 2021. These workshops enabled collaborative discussion on ways to move forward and co-development of actionable plans towards mutually agreed goals. Partners were also regularly offered opportunities to provide written reflection and feedback after workshops.

This project has highlighted an effective approach to collaborative working across groups and sectors, and ways in which to extend reach to seldom-heard and hidden communities. Emerging findings are being used to create a Good Practice Guide for commissioning with the sector that can be used by all NIHR partners and beyond. Work is also currently underway to develop a jointly funded VCSE Health & Wellbeing Research Partnerships Co-ordinator who will be located within VONNE in order to strengthen PICE diversity and sustainability across the North East and North Cumbria.

"…the impact on our organisation is people look up to us and because of being involved with PPIE it has given the centre more importance and people feel they will be able to get more information which will be more up to date and accurate. This improves the standing we have in the community…I felt really empowered and honoured to be on the panel and being involved in decision-making made me feel very proud and important”

- Shirley, member of the Commissioning PPIE in research Collaborative (VCSE partner)

Training away the barriers: Public Involvement and Co-production in Research module (PP0435) at Northumbria University

Genuine and meaningful public involvement and co-production in research relies on the provision of appropriate training opportunities to support all those involved in their role. Whilst there are increasing opportunities for researchers to develop their skills and knowledge around community involvement and engagement, there are relatively fewer opportunities for service users, carers and other public contributors to engage in research training.

A short course was developed to support mental health service users and carers to design, conduct and analyse data as part of an NIHR Research for Patient Benefit funded study, led by Professor Toby Brandon, Northumbria University, entitled ‘Is there a pathway to recovery through care coordination? Emancipatory action research with mental health service users, carers, and professionals within Northumberland, Tyne and Wear’. Funded by Cumbria, Northumberland and Tyne and Wear (CNTW) NHS Foundation Trust, this 10 week (+ optional 4 weeks) course was university accredited, with content designed through a steering group of academics, service users and carers and practitioners.

“[The course] gave me the opportunity to learn not only the skills to developing my own research skills, which is so empowering. It allowed me to work alongside academics, professionals and most importantly to listen to the voices of people with lived experience, advocate on their behalf through evidence, so effectively contributing to bring about positive changes to care coordination.”
- Jane Noble, Service User

Whilst this course was initially developed to support research activity within a specific project, the positive impact of, and subsequent widespread interest in, this form of training led to plans to offer an expanded 20 credit module to give those with lived experience the skills, knowledge and confidence to take an active and meaningful role in research projects.

This module, which is due to launch around March 2022, will be delivered via a mix of both face-to-face and online sessions and is expected to cover the theory behind conducting research, how research is conducted in practice, ethics and safeguarding and familiarise students with the language (or ‘jargon’) used within research. Content will be delivered by those active within the research field, with opportunities for real involvement provided at the end of the module. In this way, the module works towards increased co-production in research, with those taking part moving beyond involvement as a ‘service user’ or ‘carer’ etc. to also become, 1) a student of the university (with e.g. full access to library services, and meeting spaces on campus) and 2) equipped with the knowledge and skills to challenge, influence and shape research that is important to them and their communities.

“Working alongside CNTW and others, in the development of this expanded course for Northumbria University, has been incredibly enlightening and beneficial for my own personal interests in education around mental health. It’s shown me just how much effort and dedication all those involved hold for co-production and it has encouraged me to be more confident in such opportunities - which I believe is monumental in enhancing public involvement.”
- Aimee Wilson, expert by experience