Enhancing public involvement and community engagement in research across the North East and North Cumbria: Scoping existing good practice and proposing next steps.

Prepared by:

Angela Wearn, Research Fellow in Public Involvement and Community Engagement, NIHR Applied Research Collaboration North East and North Cumbria
Simon Douglas, Strategic Co-Lead: Targeting, NIHR Clinical Research Network North East and North Cumbria
Sara-Jaye Long, Research Assistant, Cumbria, Northumberland, Tyne & Wear NHS Foundation Trust

On Behalf of:

NIHR Clinical Research Network North East and North Cumbria
NIHR Applied Research Collaboration North East and North Cumbria
NIHR Research Design Service North East and North Cumbria
NIHR Newcastle Biomedical Research Centre
Cumbria, Northumberland and Tyne and Wear NHS Foundation Trust
Newcastle University
Northumbria University

Executive Summary

Public Involvement and Community Engagement (PICE) in research can benefit individuals, communities and organisations and as such, is widely promoted across National Institute for Health Research (NIHR) infrastructure. In the production of this report, we have engaged widely across the North East and North Cumbria (NENC), with NIHR, universities and the voluntary sector to discover what is happening in the region, to see what lessons we can learn and to develop ideas for further progress in the future.

Building capacity for high quality involvement and engagement activity is important to ensure research opportunities and outcomes are accessible to, and representative of, those who have been traditionally underserved by research activity. NENC has high disease burden and high levels of health inequality. Increasing and enhancing existing research involvement and engagement work in this region is therefore important to address these challenges and identify areas of unmet need.

There is much excellent engagement and involvement of communities and public and patients in research across the NENC and many existing initiatives which aim to further this remit. In line with this, the Local Clinical Research Network’s Targeting Health Needs strategic theme aims to enhance the links between local communities and research, improving access and opportunities for research; particularly within underserved, marginalised populations, groups and geographies.

The present report was developed to support these aims by 1) showcasing examples of existing good practice within the region which have been effective in increasing PICE in research and 2) outlining ‘next steps’ and future targeted projects to build upon current work. This report therefore strengthens efforts to increase diverse involvement and engagement in health and social care research and provides a clear route for future investment of both time and resources.

Background

Defining public involvement and community engagement in research

NIHR INVOLVE define public involvement in research as research being carried out ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’ or ‘for’ them. The following terms are also defined to further differentiate between activities.

• Involvement – where members of the public are actively involved in research projects and in research organisations
• Participation – where people take part in a research study
• Engagement – where information and knowledge about research is provided and disseminated

Many terms and acronyms are used when referring to community involvement and engagement in research, often with subtle variations in focus. Some groups and organisations use acronyms that emphasise the role of individuals in research (e.g. Patient and Public Involvement; PPI, Public and Patient Involvement and Engagement; PPIE, Citizen Engagement; CE) some incorporate both an individual and community focus (e.g. Public Involvement and Community Engagement; PICE) and some are broader terms which emphasise the importance of involvement, engagement and participation (e.g. Public and Community Involvement, Engagement and Participation; PCIEP). Given the broad overlap, many of these terms are often used interchangeably.

For consistency, this report will use the term PICE, to emphasise all aspects of health and social care research (i.e. rather than a focus on ‘patients’) and as an inclusive description of the involvement and engagement of a diverse range of people, communities and organisations in research (1). In addition, we also use the term co-production where appropriate within the report; this refers to involvement which is focused on working together in an equal partnership, with shared decision-making power across all stakeholders (e.g. the public, researchers, clinicians etc.) (2)

‘The public’, within the context of this report, refers to patients, service users, carers, relatives and other members of the general public who are interested in and/or affected by health and social care research.

‘Communities’ refer to groups of individuals who are linked by geography/place of residence, condition or demographic category (e.g. age, gender).

Summarising the evidence: why, and how, should we include the public and communities in research?

One of the key components to shaping and developing the way in which health and social care research is conducted is the involvement of patients and the public. The focus of a dynamic relationship between members of the public and researchers has been steadily advancing over recent years as it is seen to improve the quality and relevance of research, reduce research waste and serve the broader democratic principles of citizenship, accountability and transparency (3,4). Public involvement is a key focus of NIHR health and social care research, as the public have the right to a say in what and how publicly funded research is undertaken. NIHR policy states that it is hoped by 2025 the public as health service users will “be aware of and choosing to contribute to research” (5). In this way, public and community involvement in research can also be described as a social justice issue as, at its core, the term demands that research and decision making ‘about’ specific communities includes the voice and experience of those communities, empowering the public to ensure research and research outcomes are reflective of their needs. As part of this, there is also a strong focus on addressing inequalities and challenging outdated approaches and practice, to further facilitate the involvement of those who have previously been excluded from research spaces.

Previous literature has reported the impact of PICE in research. For example, patient/public involvement has been shown to increase recruitment into clinical trials, as well as providing a more current and ‘real world perspective’ when preparing research proposals (i.e. contrary to proposals being driven solely by the priorities of academics/health and social care professionals). This in turn increases public acceptability of trial/research design and ensures a greater likelihood of relevant and relatable findings (6,7). The involvement of patients and the public in research has also been found to have a range of benefits for individuals such as providing a life focus and improved relationship with, and knowledge of, the individual’s diagnosis or illness (8,9) Involvement in research can also facilitate the development of new skills such as communication, presentation and research skills and can have many positive social aspects such as developing new support systems and friendships.

However, there are also potential negative impacts of research involvement and engagement such as overburdening communities/individuals, frustration, poor researcher-community communication and further marginalisation for those who already have increased barriers to accessing and engaging in research. Indeed, Cowden and Singh (11) suggest that organisation-led involvement encourages a certain ‘type’ of participant involvement. This often results in specific groups and community members routinely going unheard, for example those with extremes of age, non-fluent English speakers, the homeless and those with complex health and social care needs.

Work conducted through the Innovation in Clinical trial design and Delivery for the underserved (INCLUDE) project (12) identified a list of groups who may be underserved in health research (see Appendix A), although as the authors highlight, determining which groups are underserved is highly context specific and will differ depending on, for example, geographical location, clinical need and/or the research question asked. Nonetheless, this insight can inform efforts to address the existing lack of diversity in PICE, which need to be overcome in order to encapsulate a representative portrayal of our entire population and identify the research priorities of those most in need of support. Ashcroft et al. (8) propose that the use of clear and inclusive language and terminology, giving regular support and feedback, and ensuring people involved in the research have sufficient time to digest information are key to alleviating potential negative experiences of research involvement, particularly for traditionally excluded, or underserved, groups. The UK Standards for Public Involvement (13) acknowledge this and suggest it is important to learn from both positive and negative impacts in the pursuit of greater diversity and inclusivity in PICE.

Given the potential for both positive and negative impacts, numerous frameworks have been developed to support public involvement and community engagement in research. Greenhalgh, Hinton, Finlay, et al. (7) collated and reviewed published frameworks to determine how they are used in practice. This systematic review identified a number of frameworks developed to help support, evaluate and report involvement in research, broadly grouped into five categories;

Power‐focused: designed to surface, explore and overcome researcher‐lay power imbalances.

Priority‐setting: designed to involve patients and lay people in setting research priorities.

Study‐focused: designed to maximize recruitment and retention to clinical trials (and, less commonly, other study designs), thereby improving the quality and efficiency of research and/or maximizing its societal impact.

Report‐focused: designed to guide writing up and critical appraisal of research reports.

Partnership‐focused: designed to assure transparency and public accountability in researcher‐lay collaborations.

This work draws together a range of valuable resources for informing, and improving the quality of, public involvement and engagement research. However, the authors highlighted these frameworks were not often used beyond the groups that had developed them, and suggested that focused co-design of a framework, tailored to local contexts and needs was a more effective approach than direct application of pre-existing model (7). This tailored approach may be particularly valuable when working alongside communities who are traditionally under-served in research, as it ideally allows for a sense of shared ownership and incorporates a focus on the often complex, context-specific needs and priorities of individual communities.

The North East and North Cumbria region

The North East and North Cumbria (NENC) region faces some of the greatest challenges to health and wellbeing in England with high rates of poverty, unemployment, obesity and tobacco related illness; both life expectancy and healthy life expectancy (i.e. years spent in good health) are lower than in comparison to other regions in England (14,15). The region also has persistent within-region inequalities whereby there are stark differences in life expectancy even within a few miles (14).

The NENC NIHR infrastructure includes a number of organisations that are committed to reducing inequality within the region and include a strong focus on increasing public and community involvement and engagement in research. An overview of the NIHR organisations within this regional infrastructure is included in Appendix B. Much of the current PICE activity within the region is underpinned by learning developed throughout the NENC Research Design Service’s Reaching Out Programme. This programme aims to build new and lasting partnerships to address the under-representation within public involvement networks. These groups include those from ethnically minoritized communities, mental health service users, pregnant women, rural communities, working people and vulnerable children. Outcomes from the programme will be launched nationally in 2022.

The Clinical Research Network NENC strategic approach: Targeting Health Needs

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. The four main strands of the theme are:

• Creating new research delivery opportunities with existing partners, other local NIHR infrastructure and Newcastle Health Innovation Partners (AHSC), local authorities and near and non-NHS healthcare providers to create novel research access and collaborations.
• Work with partners to develop and deliver research that serves the needs of all the populations within NENC, in particular targeting those that have high need and/or are difficult to reach
• Supporting the embedding of research learning and adoption in clinical care to ensure the population needs are better met
• Developing tools and sharing information to understand and demonstrate the health and care needs of our local population

To achieve these objectives, and enable further development of the Targeting strategic theme, a project was developed in collaboration with the NIHR Applied Research Collaboration NENC and other regional stakeholders. Overall, this project aims to identify the existing work within the region around PICE, identify areas of future investment and understand where the LCRN can add value.

This report is the first stage of this project, the specific objectives of which are:

• To highlight existing examples of good practice in increasing PICE in research across the region and to use this intelligence to develop future plans
• To summarise ‘next steps’ and outline future targeted projects which have the potential to build upon these existing partnerships, support the identification of community-led research priorities and facilitate the involvement and engagement of the most under-served and in-need groups across the region.

Case studies: examples of existing good practice

Please refer to this document for examples of existing good practice.

Building on existing good practice: next steps

The previous section has showcased the broad and collaborative networks, across NENC NIHR infrastructure and beyond, that exist to promote and support public involvement and community engagement in research. It is clear that there is significant existing knowledge and enthusiasm for developing diverse research partnerships across groups and sectors, and that the region has a wealth of diverse lived experience that could inform and guide future research priorities.

To drive forward the shared goals of NENC research infrastructure to reduce health inequalities, reduce poor health outcomes and increase diversity in research involvement and engagement, future investment should aim to build upon areas of good practice, focusing time and resources to:

1. Signpost and strengthen existing research partnerships across the region
2. Create innovative and accessible involvement opportunities for underserved groups
3. Build research capacity within communities

Details of future targeted projects that address these priorities are outlined below and summarised in Table 1.

Table 1. Summary of projects to build upon existing good public involvement and community engagement practice with the North East and North Cumbria region.

Signpost and strengthen existing research partnerships across the region: Development of a digital service directory and interactive map

As part of the development of this report the authors began to gather contacts across the region and to begin to understand the wealth of community involvement and engagement which already exists. Given the existence of these wide-ranging research engaged groups and networks crossing higher education institutions, healthcare, social care, local authority and the voluntary and community sector, work is currently underway to develop a co-created ‘service directory’ and map as an interactive, easy to use tool to identify research engaged groups across the region (see appendix C for examples of similar approaches within the region, from Signpost NENC and a similar tool for veterans developed by Northumbria University). Key features of the map/associated directory are intended as follows:

• Community organisations and other relevant groups will be able to add their own information to the directory via a straightforward online form.
• Content is intended to be searchable and multi-layered, in that users can search for groups based on geographical location, population or community focus and/or clinical/health/social care categories.
• The priority focus will be members of the public, who can use this map to find out where they can go to engage and become involved in research on a wide variety of topics.
• The tool will be value to multiple audiences, for example researchers, health professionals or community organisations will be able identify existing groups they may want to collaborate or connect with and will be able to search for these by geography or interest type.

In light of the strong foundations that already underpin this work (i.e. extensive regional PICE focused networks and existing technology to support a service directory and interactive map) future investment could be used to mobilise these existing assets; enhancing and supporting collaborative working across groups. For example, funding further administrative support for already established networks such as Creating Connections will help to extend regional partnership working in PICE. In addition, a common challenge for researchers is resourcing funds to reimburse members of the public for their time and contribution without specific research project grants in place; additional available funds in this area would allow for enhanced relationship building and more in-depth early PICE activity. Finally, given the existing technology developed within the region (see Appendix C), further work should be done to expand the reach and scope of this technology, so as to be of benefit beyond the veteran population.

Create innovative and accessible opportunities for research involvement: Developing and evaluating a community-based research hub

Offering informal opportunities to promote research and involve members of the public in identifying research needs and priorities has already been shown to be a successful approach within the region through case study 3 (Multiverse Lab). The success of the physical ‘tours’ of Multiverse Lab also demonstrate the value of connecting with local populations in trusted and familiar spaces. Engagement could be rolled out further across the region either through funding an extension of the existing project or supporting the development of a future work which uses a similar approach. As mentioned above, additional available funding for informal, community-based priority-setting activities would be integral in supporting the development of this approach. It may be that in the future, having a more permanent community located research hub will allow for longer lasting relationships and research partnerships to develop, greater communication and feedback to those who participate or become involved in research and support increased research literacy within the community. An exemplar site could also be implemented alongside a process and outcome focused evaluation which would be invaluable to determining long-term feasibility and sustainability of this approach.

Building research capacity within communities: Embedded research posts within the VCSE sector

The Commissioning PPIE in Research Collaborative in case study 4 co-created a roadmap of necessary conditions or ‘what needs to happen’ in order to develop a sustainable approach for commissioning PPIE in the VCSE sector. One of the options identified by the collaborative was to have dedicated research focused posts embedded within VCSE organisations. Existing financial/resource constraints within the VCSE sector introduce a significant challenge to establishing this goal. However, investment and provision of resources from NIHR research infrastructure would ensure capacity can be located within the VCSE as well as the HEI sector – and enable the development of more equitable researcher partnerships. Such post(s) can be flexible in terms of remit and scope dependent on need (i.e. working within larger regional VCSE infrastructure such as VONNE or Cumbria CVS, or more specific health-focused organisations) with the embedded nature of the roles bringing wide-reaching benefits; supporting communities to identify and develop research projects, deliver peer-research training skills and identify pathways to research impact within the community. Discussions are currently underway to fund a Research Partnerships Co-ordinator post within VONNE; early learning and evaluation related to this post could be valuable in supporting wider roll-out of VCSE-embedded researcher roles. Embedded researchers have also recently been employed through NENC ARC to develop a research culture within a social care context; the learning from these posts and associated benefits could likewise be applied to such a role within the VCSE sector, to encourage similar outcomes.

Building research capacity within communities: region-wide training and skill development for community members

As alluded to above, further individualised support and training opportunities should be provided to members of the public, service users and carers who are often invited to become involved in research projects as public contributors or peer researchers. Provision of such opportunities may be particularly valuable for those within underserved groups who often face increased barriers to accessing educational opportunities. Investment of time and resources to adapt and expand public focused training, as detailed in case study 5, could have benefits for individuals (e.g. increased confidence and knowledge when working with researchers, personal skill development), move research organisations within the region towards more meaningful and genuine involvement and co-production activity and offer a ready-to-go training module for researchers to cost into their PICE budgets when writing bids for research funding. Preliminary discussions have taken place with Northumbria University about the broadening of the accredited course from mental health to cover a more generic range of research which would prepare cohorts of students to be able to be involved in research at a meaningful level as co-producers or collaborators.

Conclusion

The many and varied collaborative public involvement-focused networks across the North East and North Cumbria are an asset to the region. There is wide recognition of the potential of these networks to improve the region’s research engagement and influence future research both in terms of design and question, along with real determination to develop and promote accessibility.
We have an opportunity now to build on existing work, only a small portion of which is summarised here, and capitalise on the developing relationships and connections which have resulted from the development of this report. To do so we need to further engage communities in general and the research community and to continue to make the case for the importance of research involvement and engagement.

This will require some investment which should be aimed at delivering on some or all of the projects proposed above. In particular the potential of interactive directories and maps which enable two-way engagement between communities and researchers and have the capability to increase engagement and participation in research and enabling greater capacity in the VCSE sector to address some of the known issues around difficult to reach groups would be effective.
Investment to build upon areas of good practice in this way would therefore maximise the benefits of existing regional assets, enhance research engagement and participation within the most under-served groups and ensure that research priorities reflect the needs of real people and real communities.

References

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