PPIE strategy document

Motif

What is public involvement and engagement (PPIE)?

We use the terms involvement and engagement as defined by National Institute for Health and Care Research (NIHR):

  • Involvement is where members of the public are actively involved in research projects and research organisations
  • Engagement is where information and knowledge about research is provided and disseminated

The NIHR Bristol Biomedical Research Centre (Bristol BRC) and NIHR Clinical Research Facility (CRF) believe that effective patient and public involvement and engagement (PPIE) plays a crucial role in ensuring that we maximise the patient and public benefit of our work.

Effective PPIE helps us do research, which is more relevant, better designed and with clearer outcomes. Our approach to PPIE is therefore built around three key principles.

Key principles of our strategy

  • Inclusive decision making
    It is crucial that our public contributors can influence relevant decisions in relation to the conduct of our research at both project level and within the BRC/CRF overall.
  • Equality diversity and inclusion
    Good quality PPIE requires that we engage with a diversity of experience and knowledge. Specifically, we want to ensure that we address issues of health inequality and engage with underserved communities.
  • Continuous improvement
    It is essential to be able to evaluate and provide feedback on the quality of our PPIE if we are to improve our practice.

This document explains how we plan to put these principles into action. These principles have been broken down into six key goals. Where these reflect the UK Standards for Public Involvement, that is in brackets.

  • Embed PPIE within BRC and CRF management and governance (governance)
  • Have more diverse people helping design and shape our research (inclusive opportunities)
  • Build partnerships with representatives and organisations in underserved communities (working together and communications)
  • Develop innovative approaches and advance PPIE into new areas (inclusive opportunities)
  • Develop new training resources to support PPIE (support and learning)
  • Use accessible evaluation tools to improve PPIE practice and assess its impact (impact)

Working in partnership to deliver our goals

To deliver our goals we will work with several key partner organisations. This means that we will draw on best practice and learn from other organisations carrying out PPIE in research.

We work with our regional PPIE network, People in Health West of England (PHWE). PHWE works with a range of NIHR organisations carrying out research in our region. It also has good links with our local. PHWE promotes the development of innovation and best practice in PPIE and increases the speed at which best practice is adopted across the region.

Health inequalities

A key aim of our work is to make to make sure our research benefits the people who need it most. Bristol is a vibrant city, full of engaged communities and energetic people who really care about the place they live. Bristol and the area around it includes people living in urban, rural, and coastal areas, who come from a range of heritages and backgrounds.

For example, within the city of Bristol itself, there are people from 187 countries, speaking 91 different languages. However, there is a lot of inequality in health outcomes and availability of care and support. In the most deprived areas of Bristol, men die nearly 10 years earlier, on average, than in the wealthiest areas. In the wealthiest areas of the city, 100 per cent of school leavers go on to higher education, compared with less than 10 per cent in the poorest areas. In Bristol, 15 per cent of the city’s population live in areas that are ranked among the 10 per cent most deprived of areas in England.

To further ensure that our research benefits the people who need it most, we have partnered with the Bradford Institute for Health Research (IHR). Some areas of Bradford, similarly to Bristol, are affected by significant deprivation. However, the social history and ethnic mix of Bradford is very different to that of Bristol.

Working with Bradford IHR will allow us to work with a wider range of underserved communities e.g., Asian communities. Bradford IHR has also developed innovative methods for working with underserved communities, e.g., the use of citizen science methods, which we hope to benefit from.

Programme of work

Public advisory group

We have established a BRC/CRF public advisory group (PAG) which will be responsible for:

  • Input into the governance of the BRC/CRF
  • Advise and monitor the delivery of this strategy
  • Provide support to the central BRC/CRF PPIE Team

We will expand the scope of the BRC PAG to incorporate the work of our CRF, with extended membership of up to 15 Public Contributors (PCs).

PAG members contributed to developing this strategy and will monitor progress, advise on future development and drive research prioritisation exercises.

Short term (1-2 years)

  • By May 2023 we will have recruited members of an expanded Public Advisory Group (PAG) overseeing PPIE in the BRC and CRF, co-produced a strategy and delivery plan, and ensured representation in BRC and CRF governance

Medium term (2-3 years)

  • We will identify and map the PPIE needs of the CRF and BRC research areas by end of year 2
  • We will have worked with the PAG to review and evaluate initial PPIE work, feeding back learning to BRC and CRF researchers and public contributors
  • We will work with the PAG and our PCs to develop accessible descriptions and acceptable delivery methods for novel health technologies for new first-in-human studies

Long term (4-5 years)

  • By December 2027 we will have worked with the PAG, community groups and researchers to evaluate the different strands of our model of PPIE
  • We will share learnings through the NIHR PPIE Leads group, with stakeholders, and to national and international academic audiences via publications and conference presentations
  • On the basis of the results, we will develop plans for a new five-year funding application for an NIHR Bristol CRF and BRC

Health ambassadors

The BRC and CRF will work with our regional Clinical Research Network (CRN), Applied Research Collaboration (ARC) and Health Protection Research Unit (HPRU), alongside the Bristol, North Somerset and South Gloucestershire Integrated Care System (BNSSG ICS) and the newly formed Research Engagement Network Development (REND) to build upon and extend our research ambassadors project (initially funded by the NIHR Centre for Engagement and Dissemination).

The scheme involves recruiting, training and mentoring promising leaders from underserved communities to provide a link between the world of research and that of key underserved communities. This work will compliment CRN West’s plans for research champions and improving recruitment to studies.

Short term (1-2 years)

  • By December 2024 we will have recruited a second round of five research ambassadors, recruiting, training and mentoring promising leaders from underserved communities to carry out research projects related to identified healthcare issues (with equality, diversity and inclusion (EDI) and community partners)

Medium term (2-3 years)

  • By the end of year 3 integrate the ambassadors project into a regional strategy for addressing EDI in research, in partnership with the REND network, with the aim of increasing research involvement and recruitment from underserved communities
  • Work with the Bristol Academic Health Science Centre (AHSC), Integrated Care System (ICS) and local community organisations using population health management datasets and analytics, and community conversations, to identify barriers that explain geographical and community disparity in research participation

Long term (4-5 years)

  • Evaluate outcomes from this work and use of Research Ambassadors and widely disseminate and publish the findings by the end of year 5

Community engagement

A Community PPIE lead will be recruited to build long-term, reciprocal relationships with key groups currently under-represented in our work and to co-ordinate our work with other initiatives underway to improve involvement. Partnership with Bradford gives access to a different demography and creates opportunities to develop new ways to involve underserved communities, e.g., we will build on work underway in Bradford using modified citizen science methodologies to support community involvement.

We have created a Public and Community Involvement Fund to support work with underserved communities of £25,000 split between Bristol and Bradford. The budgets will support BRC and CRF researchers, public contributors and community groups to work together to co-produce projects. We will run a competition for partnerships of researchers and public contributors to apply to build on, or create new, partnerships with underserved communities. Applications will be judged by a panel including public contributors drawn from our PAG.

Short term (1-2 years)

  • By December 2024 the BRC and CRF community engagement lead will have been appointed and begun work with CRN, AHSC, REND, ICS and other partners to build links with the public and underserved communities, including those relevant to our themes

Medium term (2-3 years)

  • By December 2025 we will have used the BRC and CRF Community Engagement Fund to fund co-produced involvement projects with researchers and community groups
  • We will explore a variety of ways to increase patient and public engagement through a variety of physical (research kiosks and prompts by staff at out- and inpatient check-in) and social media platforms to inform and engage patients about currently research studies

Long term (4-5 years)

  • Work with the AHSC and CRN to further expand communication and discussion opportunities to participants/patients regarding the outcomes of the research studies they participated in, with a particular focus on underserved communities, through enhanced use of digital media, data visualisation techniques and more traditional forms of communication
  • We will have identified funding to support sustainable, ongoing mutually beneficial relationships with underserved communities that extend into the next round of BRC and CRF funding
  • Our work will be written up in both academic papers and public/community facing projects to maximise both academic real-world impact

Innovation in PPIE

We will build on our work with the large NIHR COVALESCENCE long COVID study and with OpenSAFELY (www.opensafely.org) to support meaningful public involvement in data and population science by helping our public contributors develop their understanding of quantitative methodologies and data analysis techniques, along with understanding of the governance and ethical issues that sharing data raises. This will facilitate involvement in every stage of Bristol BRC research, including data interpretation, synthesis and dissemination.

Our public involvement lead will also draw on his experience of developing public involvement in the development of the Great Western Secure data environment.

Short term (1-2 years)

  • Recruit and train a group of public contributors to support work in data and population science drawing on training developed with Bristol Health Partners AHSC

Medium term (2-3 years)

  • Develop resources to support public involvement in quantitative research and implementation of secure environments

Long term (4-5 years)

  • Write up work for publication and dissemination

Support and training for PPIE

We will provide training for public contributors which is tailored to the research areas and projects that are relevant to the BRC and CRF. General training will be provided in the following areas:

  • Introduction to PPIE
  • Evaluating PPIE
  • Co-production
  • Digital health
  • Facilitation skills
  • Understanding research methods (for PCs)

This joint BRC and CRF training will be provided three times a year with the opportunity to request specific training input as required. PPIE facilitators embedded in the BRC research themes and in the CRF will support researchers with PPIE for specific projects, including advising on approaches and providing guidance on recording impact.

Short term (1-2 years)

By December 2023 we will have:

  • Embedded PPIE facilitators in BRC themes
  • Identified and prioritised initial PPIE needs of all BRC themes and the CRF
  • Provided PPIE training for BRC and CRF staff
  • Operationalised routine use of our PPIE tools

Medium term (2-3 years)

  • By December 2025 with PAG and researchers we will co- develop, and pilot training for public contributors and researchers to support meaningful involvement in data and population science

Long term (4-5 years)

Developed resources to support public involvement in:

  • Data heavy quantitative research
  • Support meaningful public involvement in the design and delivery of secure data environments

Evaluation of impact

Basic evaluation of PPIE will be mandatory. We have developed both online and paper-based impact logs. These are quick and simple to use. BRC and CRF researchers will be required to complete these to provide a basic level of monitoring of PPIE.

We will also promote the use of the Cube evaluation framework, as an accessible way to evaluate and improve the quality of public involvement through the promotion of a dialogue between researchers and public contributors.

The Cube framework addresses four key dimensions of public involvement:

  • Agenda setting
  • Strength of voice
  • Accessibility of involvement opportunities
  • Organisational change

The outputs are displayed as data points within a three-dimensional virtual framework, generating a characteristic ‘pattern’ of involvement. The framework can be delivered in digital and face to face formats dependent on the needs of the public contributors.

Short term (1-2 years)

  • Implement the use of impact logs, initially in the BRC, followed by the CRF with all researchers

Medium term (2-3 years)

  • Promote the use of the Cube framework  
  •  Review data from impact logs with PAG and theme PPIE leads
  • Implement changes to PPIE strategy

Long term (4-5 years)

  • Develop plans for a future PPIE strategy based on what we have learnt from the current BRC and CRF  

Resources

The PPIE lead for the BRC and CRF is Andy Gibson, who is Associate Professor of Public Involvement at the University of the West of England. Our PPIE lead in Bradford is Shahid Islam. Within the BRC, each theme has a PPIE Academic Lead who provides oversight of PPIE work in the theme and act as point of contact between research teams and the central PPIE team. The PPIE work in the CRF is led by the Director and overseen and approved by the CRF Senior Management and Prioritisation Group.

We have 1.0 FTE of PPIE facilitators working across the BRC research themes and the CRF. They also help run our young people’s advisory group, which is used by researchers across the region. The facilitators will support researchers, providing advice on approaches, helping organise practical arrangements and ensuring impact logs are filled in.

We will appoint a BRC/CRF community engagement lead, working at 0.5 FTE, from Year 2. This person will build links with underserved communities. They will have access to a community involvement budget of £25,000 split between Bristol and Bradford. Shoba Dawson, a researcher with experience of community engagement, will also work on community engagement in Year 1.

There are budgets to support PPIE work in the BRC centrally (£20,000), in the BRC themes (£99,704) and in the CRF (£27,000). These funds will pay public contributors for their time and provide travel expenses. They will also cover strategic PPIE work, such as development and delivery of new training courses.

The BRC contributes to funding an administrator and communications lead for PHWE. These people organise cross organisational public involvement activities and assist in the communication and dissemination of best practice in PPIE across the Bristol region and beyond.

How will we monitor and make sure we achieve this strategy?

The PPIE strategy is decided by the public advisory group and it is then signed off by a group of senior staff in the BRC, called the BRC executive group.

Once the strategy is decided, the work is managed by the BRC PPIE group, which is chaired by the PPIE lead and includes the academic PPIE leads for all the themes as well as the PPIE facilitators. They will review examples of impact and talk about how to make PPIE better in the BRC. We will talk to the PAG every three months to explain how we are progressing. They will monitor progress against these short-, medium- and long-term goals will be monitored by our public involvement advisory group, working in conjunction with the BRC/CRF Directors.

We will discuss progress with the wider BRC, including the executive group, every six months.

CRF will discuss progress in their senior management and prioritisation group. This is a group of senior staff who meet once a month to make sure that all the work undertaken by CRF staff is a suitable use of resources and is completed to a high standard. The CRF senior management and prioritisation group will sign off the PPIE plan and will check the progress of the plan every six months.