Patient and Public Involvement, Engagement and
Participation Strategy
This strategy describes how we will involve and engage the public in all that we do through to 2027. We will build on the well-established foundations of PPIE(P) in Southampton and continue to innovate, embed EDI and develop best practice. We will achieve this with our public partners by placing co-production, an approach to working together in equal partnership and for equal benefit, at the heart of all our efforts.
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Who we are
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We work to turn scientific discoveries into better treatments, care and health. Our three integrated centres, embedded within the University Hospital Southampton and the University of Southampton partnership, are:
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NIHR Southampton Biomedical Research Centre (BRC)
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NIHR Southampton Clinical Research Facility (CRF)
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Southampton Centre for Research, Engagement and Impact (SCREI)
Our NIHR Southampton Biomedical Research Centre (BRC) brings together leading experts across five world-leading themes:
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Nutrition, Lifestyle and Metabolism
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Respiratory and Allergy
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Data, Health and Society
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Microbiology, Immunology and Infection
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Perioperative and Critical Care
These themes work together to improve people's health and resilience throughout the life-course. The BRC develops people by providing unique tools, world-class facilities and support. It is advancing the next generation of better treatments, tailored to the individual.
Our NIHR Southampton Clinical Research Facility (CRF) is where research first enters the clinic. The facility provides the safest possible environment for children and adults to take part in cutting-edge research studies and trials to develop and test new treatments, vaccines and medical devices. The facility has experts in the highest risk trials in the earliest phase of development, and this expertise is shared across the UK national CRF network.
The BRC and CRF support such trials and studies improving understanding of health and wellbeing, so we can:
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Improve current treatments, medicines and care, and develop new and better ones
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Diagnose diseases and conditions earlier or more accurately
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Prevent people from developing diseases and conditions
The Southampton Centre for Research, Engagement and Impact (SCREI) supports the BRC and CRF. It brings together four areas:
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Patient and Public Involvement, Engagement and Participation
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Communications
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Equity, Diversity and Inclusion
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Impact and Learning
SCREI combines expertise and support in these to drive research that is clear, open and fair. It works to engage all those intended to benefit from, use or enable its outcomes, at every stage. We see that realising the most benefit for the most people, faster.
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Aim and intent
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Our aim is to drive high-quality research built on compassion. Our intent is to be inclusive, purpose-led and co-produce all that we do. Our ultimate ambition is for co-production and public partnership to be the default and norm in all our research.
We believe compassion is “the ability to understand and share the feelings and needs of another and then commit ourselves to do something to help”. When our research has compassion at its heart, we can change people’s lives for the better. We will work with our publics over the whole research cycle. People's experiences, needs and purposes will be front and centre in all we do. In doing so, we will drive the best science and faster advances in health and care.
We intend to:
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Draw on current best practice
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Build on best practice through research and innovation in PPIE(P) and EDI
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Embed co-production, co-design and co-delivery into all research activity
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Identify those under-served by our research themes and activities, and attend to this
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Make relationship building central to our activity
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Find ways to help everyone feel that they have a place in research
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Co-create communications with those they aim to reach
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Establish clear aims and measures of success as the starting point for any piece of work
In this, we will follow the seven foundational principles of our BRC:
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Focus: on delivering our shared vision for the benefit of patients and the public
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Integration: working seamlessly across themes
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Democratisation: working with patients, the public, and the healthcare workforce, throughout the research lifecycle
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Person-centeredness: creating an environment that is nurturing and supportive of our (multidisciplinary and diverse) academic talent, patient partners and other stakeholders
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Inclusivity: embedding equity, diversity and intersectionality, ensuring we 'leave no one behind’
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Collaboration: enhancing our science by promoting interdisciplinary working and seeking the most effective partners (patients, public and professional) regionally, nationally and internationally
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Efficiency: relentlessly pursuing value for money and efficient operation through strong governance, share infrastructure, partnership working and effective goal-driven leadership
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Southampton Patient and Public Involvement and Engagement PPIE(P)
A PPIE(P) Academy is central to our PPIE(P) work. We are co-developing this with diverse public partners and research community. Through side-by side learning and wide ranging opportunities, the PPIE(P) Academy will:
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Offer a place to learn about public partnerships
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Promote and develop best practice and new ways of exploring people’s experiences
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Build understanding, trust and respect between all involved
The academy is key to our ultimate ambition of co-production as normal practice. It will be a learning space that:
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Is inclusive – where everyone can belong
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Offers activities, experiences, opportunities and learning
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Evolves, involving new people and growing new ideas
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Allows its partners to own it and make sure that it is doing its job well
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Understands the needs of different members of the group
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Is Open and honest about what works and what needs work
We are using Appreciative Inquiry to support the co-production of the PPIE(P) Academy. This has a collaborative, strengths-based approach, based on the four steps shown in the bottom step of figure 1.
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Figure 1 The co-production process using Appreciative Inquiry
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Initial co-production workshops captured stakeholders and public views. They felt it should help all involved to:
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Appreciate their role and responsibilities in creating safe spaces to explore, debate and share
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Identify their own needs and those of research teams
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Understand the research process, different roles and responsibilities
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Show the benefits of public partnerships, and identify ways to overcome barriers to working together
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Use diverse ways of sharing and understanding peoples' experience (arts, media, one to ones, informal and formal meetings)
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Take activity into the community, places where people can work side-by-side equally and comfortably
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Develop personal and interpersonal skills
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Encourage people to share their relevant talents and skills
Our first co-produced output for this strategy is the ‘Raising Voices in Research’ pledge (figure 2). The pledge was developed with one of our Integrated Care Boards (ICB), Action Hampshire and the University of Winchester. Together we worked with 11 Voluntary, Community and Social Enterprise organisations to reflect their communities’ needs and perceptions of research. A Research Collaborative, arising from this work, is connecting those with knowledge of research and those experienced with underserved communities.
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As co-signaturies, we will use this to inform the co-production process of the PPIE(P) Academy.
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Figure 2 The Raising Voices in Research Pledge
The PPIE(P) Academy offer:
training and support
The academy will support all partners in the research community. It will provide timely, high-quality PPIE(P) training, support and learning opportunities. It will:
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Support comprehensive PPIE(P) planning at the grant application stage, recognising the time and resources needed to engage under-served groups.
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Co-design and co-deliver PPIE(P) skills-based training courses, enhanced by 1:1 tailored guidance and support.
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Track and assess our training and services with our partners, using this to develop new opportu-nities that help research teams embed PPIE(P).
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Identify opportunities to understand what makes PPIE(P) effective through research. Work with academic partners to offer these as projects to undergraduate and post-graduate students.
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Provide mentoring and buddying schemes within and across research roles, to build understand-ing and reduce bias.
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PPIE(P) advisory board
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We involve the public in our governance at strategic and operational levels. We believe this encourages best practice and supports transparency.
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Our PPIE(P) advisory board is our means of doing so. It is key to achieving our ambition to co-produce, co-design and co-deliver all our work. It shares responsibility for tracking, assessing and reporting on all aspects of our work. Members provide public voice and viewpoints, help ensure prominence and integration of PPIE, and also hold the organisations to account for the delivery of their PPIE(P) strategy. The terms of reference, role descriptors and governance procedures will all be co-produced through public partnerships during our first year of the award.
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Together with the board, we will improve practices and culture so that:
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Public partnerships are integral to research activity
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Study participants receive feedback on studies
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Public members receive feedback on how their contributions have shaped research
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People who volunteer for studies, but are not eligible/selected, receive feedback about why
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We capture learning to improve practices and prioritise successful approaches in future projects
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We share our successes and learning via regional/national networks and events, and through publications and communications
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The board will review our activity against national frameworks. These include the UK Standards for Public Involvement in Research and the NIHR Race Equality Framework.
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The SCREI PPIE Advisory Board is democratically elected from our NIHR Community Panel. Made up of all the public contributors working with SCREI PPIE team, its evolving membership draws on our diverse Wessex communities. Our Community Engagement Manager supports inclusive membership of the panel. They prioritise work reaching and involving groups under-represented on the panel.
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We communicate with panel members every two weeks via email, with:
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News updates
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Details of opportunities to join patient advisory groups and other public and patient involvement activities
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Open trials recruiting for participants
Examples of their involvement in BRC and CRF work include:
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Supporting the BRC's development of its five themes, reviewing PhD applications and planning events
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Supporting the CRF by reviewing and sharing feedback, improving participation, and offering lived experiences as inputs to commercial study design
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PPIE(P) Leadership
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The PPIE Lead is responsible for this PPIE(P) strategy working through public partnerships. Reporting to the Head of SCRIE, they are accountable to the PPEI(P) Advicsory Board, BRC and CRF management boards.
The Lead and Head of SCREI meet regularly with the NIHR directors to report on progress and align priorities. Similar meetings with NIHR directors across Wessex also ensure alignment, and the development of the Wessex PIN.
In the BRC, PPIE team members attend:
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Quarterly board meetings – reporting on progress against the strategic objectives
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Weekly management meetings – focussing on operational needs and strategic objectives
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Regular BRC theme meetings – capturing needs and priorities as studies progress
In the CRF, PPIE team members attend:
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Weekly management meetings – reporting on progress, developing shared work practices
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Full staff meetings – tracking against strategic objectives
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6 weekly meetings with CRF Senior Nursing Lead – responding to new trials and needs of the CRF
PPIE Advisory Board members’ roles in these fora are being developed to ensure public voice in all levels of our work. This will also enable us to schedule specific activities and meetings to review progress and inform annual reporting through public partnership work. We want to ensure it reflects a well-rounded overview from the range of stakeholders who form our public partnerships.
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The PPIE(P) team
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The PPIE(P) team is part of the Southampton Centre for Research, Engagement and Impact (SCREI). As such, it works across Wessex for all our Southampton-hosted NIHR units and health research. It is also integrated with our research communications team, and our EDI and Impact activities.
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Working in this way means we can realise greater-than-sum benefits, by combining resources and providing shared opportunities to engage and involve.
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We are growing a well led and experienced PPIE(P) team that understands the research environment. All appointments are made with the involvement of our public partners. We are well networked, with national, regional and local roles.
Whole-SCREI management meetings ensure cross-support and and coordination between teams, better supporting involvement and engagement. These are supported by whole-SCREI workshops, exploring ways of increasingly integrating our PPIEP, Communciations, EDI and Impact work.
This integrated approach helps us maintain capacity and capabilities, but also allows sharing of skills, information and best practice.
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Resourcing
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Consolidated funding between NIHR infrastructure supports our PPIE(P) team, with specific staff holding portfolios dedicated to BRC and CRF PPIE(P) activity. We also have a dedicated PPIE(P) budget to support reimbursement and training for PPIE contributors, meeting access needs, support for trusted community partners and co-production of novel (including digital) initiatives.
Reaching those less involved in research
As part of the PPIE(P) team, our Community Engagement Manager works across our Wessex region. They focus on:
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Identifying those less involved in our research, and prioritising reaching these communities and groups in our activities
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Building long-term meaningful links with communities and trusted community partners
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Enabling focussed engagement and co-production between communities and research teams
Professional Partnerships
We work with regional PPIE, participation and stakeholder engagement partnerships. These include:
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Wessex Public Involvement Network
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Wessex PPIE Leads
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Wessex Health Partners
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Wessex Vaccines Hub
We collaborate with academic and peer teams on advancing best practice. This includes work with Bournemouth University and their public partners on high quality training and resources, and research into the duty of care.
We are building a team that is diverse in skills, experience and understanding. All staff have access to high quality training. This supports them in enabling compassionate research and creating safe spaces for co-production.
We want the public to see themselves in the PPIE(P) team. We proactively identify work experience opportunities within our team. These complement accredited opportunities within the PPIE(P) Academy. We will use these to support those from the most underserved communities. This includes mentoring and supporting tasks within the PPIE(P) programme.
The team provides a layered approach to PPIE(P), which includes:
1. Objective, study specific support for recruiting, training and mentoring public partners, both as co-applicants and as an advisory public partnership panel. This enables their experiences to inform and shape all aspects of the research.
2. In-depth activities, engaging studies with specific, relevant groups that we have relationships with. These groups are diverse in protected characteristics, lifestyle, and locations.
3. A broad engagement that captures the wider public’s opinions and feedback through events, partnership working and communication outputs.
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Duty of care
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We recognise that we have a duty of care for everyone involved in public partnerships. This includes being able to enable interactions where everyone:
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Feels safe and valued
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Knows that inappropriate behaviours and language are unacceptable
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Is confident that if discussions are triggering they will be managed with compassion. All involved will be supported and signposted to specialist services and organisations if needed.
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Will be able to assent or consent through appropriate processes
We will also ensure that PPIE staff are supported to have opportunities to debrief and access more support when needed.
This duty of care statement is in addition to our professional safeguarding responsibilities.
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Action plan
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The nature of co-production often precludes defining outcomes up front, so we have provided a flexible action plan for the period to April 2024. This focusses on activities and anticipated outputs, and can be found overleaf.
We recognise the need to have robust action plans for each of the 5 years of the funding, contributing to our overall five year strategy. Each year, we will reflect with our public partners on progress made and co-produce the year-ahed action plan, with SMART objectives ensuring strategic aims are advanced. These will be shared with NIHR CCF and published on our website annually.