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Full PPIE strategy document

Patient and Public Involvement and Engagement (PPI/E) Strategy 2021-2024 (full report)

Collage pictures of patient and public events and meetings

Collage pictures of patient and public events and meetings

NIHR Applied Research Collaboration Wessex

Authored by Caroline Barker (Lead for PPI/E).

Supported by our Public Champions and Katherine Baker (PPI Officer).

Document Overview:

Background information
Our vision
Our aims
Programme of activities
Resources, partners and collaborators
Reporting and monitoring
Glossary of terms 

The purpose of this strategy

Patients and the public are at the heart of our vision to improve the health and well-being of people across Wessex[1]. We need and value the voices of the communities our research serves.

The knowledge, experiences and support of patients and the public are essential to ensure that our research goals and solutions are relevant, prevent waste, and bring the greatest possible benefits to society.

This document outlines our strategy for Patient and Public Involvement and Engagement (termed PPI/E) in the work of ARC Wessex[2].

Definitions

We recognise there are different definitions to describe involvement and engagement activities within health and social care. For the purposes of this document we will adopt the following definitions:

Patient and public involvement: research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. (NIHR INVOLVE[3] 2017).

Engagement: where information and knowledge about research is provided and shared.

PPI/E: an abbreviation/acronym. Used to describe patient and public involvement or engagement work and projects, or activities that connect or encompass both.

Public: in this strategy we use the term ‘public’ to describe people affected by our research who do not have a professional role in health and social care services. This may include patients, service users, survivors, carers, family members or members of the general population.

We also use the acronym WISeRD, which stands for Wessex Inclusion in Service Research and Design Group. This is our strategic PPI/E group. It is composed of PPI Champions (public), the PPI/E team and staff links for each research theme.

As you read this document, you may come across other terms, abbreviations and acronyms that are unfamiliar to you. We have provided brief descriptions in the footnotes. There is also a glossary of terms at the end of the document.

Context and opportunities

ARC Wessex launched in October 2019. As part of our application to become an ARC, we had to develop an outline PPI/E strategy. CLAHRC[4] Wessex (preceded ARC Wessex) shared our commitment to PPI/E and the work done by the CLAHRC laid good foundations for ARC Wessex to build on and progress. We are proud of the work we have done to embed PPI/E in our projects and programmes over the first 18 months.

This strategy, developed in wide consultation with our partners and public communities, builds on the outline PPI/E strategy from our application. It covers activities from April 2021-Oct 2024.

Our locality, Wessex, has strengths in involvement and engagement. We have the Wessex Public Involvement Network (PIN) that ARC Wessex plays a leading role in. This is a network of staff and public working with NIHR[5] and committed to improving public involvement in research. We do this by sharing our knowledge, supporting and developing each other. We also work together on projects that would not be possible if we did not share the workload between us. These include developing PPI/E training and trialling approaches to improve diversity and inclusion in PPI/E.

Our partners in NHS providers[6], charities and higher education institutions (e.g. Universities) have their own expertise and strengths. We are willing and committed to working together on areas of shared priority.

Our Vision

We aim to deliver high quality public involvement and engagement for health and social care. Our activities will meet the values and principles of good public involvement as outlined in the UK Standards for Public Involvement[7].

Our activities will occur across, and add value to, each aspect of Wessex ARC:

  • At project-specific level (e.g. an ARC-funded or ARC-supported research project).
  • Across each of our four research themes[8] and the wider ARC programme.
  • With our partners and collaborators organisations.

Our overarching aims

Aligned to the UK Standards for Public Involvement, are aims are to:

  1. Listen to voices relevant to our research priorities that reflect the diversity of our local population – ensuring the underserved[9] have a voice (UK Standard Inclusive Opportunities).
  2. Build a culture that respects different perspectives, values contributions and supports mutually respectful and productive relationships (UK Standard Working Together).
  3. Provide health research communities of Wessex (including public) adequate PPI/E training, support and learning opportunities at the right time for their project/programme and/or their own development needs (UK Standard Support and Learning).
  4. Involve the public at strategic and operational levels, ensuring best practice and supporting research transparency (UK Standard Governance).
  5. Use innovative approaches and good communication to expand the reach of our activities, maximising impact by stimulating knowledge-of, and interest-in, our research (UK Standard Communications).
  6. Capture, monitor and share learnings to feedback to those involved, avoid duplication, contribute to the evidence base and build our academic PPI/E (UK Standard Impact).

We will build on our local strengths and focus on areas where we believe we can have the greatest impact.

Programme of activities

We have developed objectives and activities to support us to meet our aims.

In many circumstances, activities will support us to meet more than one aim. We have listed them under the most relevant aim.

For each activity, we have identified our success criteria and how we will measure and monitor success.  Where a timescale is not mentioned, these activities are expected be ongoing throughout the ARC award.

Aim 1: Listen to voices relevant to our research priorities that reflect the diversity of our local population – ensuring the underserved have a voice (UK Standard Inclusive Opportunities).

Objective: Addressing barriers to inclusive research

Activity

Success Criteria/Milestone

Measured by

Monitored by

Improve accessibility of our documents.

 

All new materials shared by PPI/E team must pass Microsoft Accessibility Checker[10] before being circulated (2022).

Documents checked before approved for circulation.

PPI Officer and Communications and Partnership Manager

Ask for and address access requirements.

 

All activities led by the PPI/E team will collect and document access requirements as standard immediately. By 2022 we expect this from everyone.

Evaluation of events will include questions that relate to whether we achieved inclusive practice.

PPI/E team

Access requirements not met escalated to the Executive Leadership Group for action.

Executive Leadership Group[12]

Apply and action outcomes from equality impact assessments[11] to our PPI/E projects and programmes.

 

Equality impact assessments applied to 25% of the PPI/E team activities 2021, rising to 50% 2022 and 100% 2023.

Monitoring data on application of equality impact assessments.

WISeRD

Objective: Underserved groups prioritised in PPI/E activities and initiatives

Activity

Success Criteria/Milestone

Measured by

Monitored by

Identify voices and communities of Wessex who do not have a voice in our research. 

ARC public members surveyed to collect demographics across protected characteristics and socio-economic markers. (2021 and 2023).

Demographic data reported against population (local population and research population).

Executive Leadership Group[12]

Context specific underserved groups identified for the new ARC-funded projects starting Oct (2021) and for research themes (2022).

Project- and theme- specific PPI/E plans revisited and, where appropriate, adjusted to prioritise inclusion of relevant underserved audience.

Projects have identified existing best practice to reach relevant underserved audience (2022).

New PPI/E initiative and approaches, prioritising inclusion of underserved audiences, built into project- and theme- specific PPI/E plans (2022-24).

Monitoring data shows review of PPI/E plans. 

WISeRD

Objective: Reaching underserved populations 

Activity

Success Criteria/Milestone

Measured by

Monitored by

Work with community groups and community leaders to build mutually beneficial relationships and co-deliver PPI/E activities.

 

New relationships built with community groups (2021-24).

Increase in database contacts across Wessex community

WISeRD

New initiatives launched (2022-24).

PPI/E monitoring data demonstrates increase in activities aimed at reaching new groups.

Executive Leadership Group

 

New audiences involved in our PPI/E activities.

Demographic data (of public) shows inclusion of underserved groups.

WISeRD

Activity

Success Criteria/Milestone

Measured by

Monitored by

Seek input from individuals with low socioeconomic status (an already identified underserved group) in ‘Population risk stratification & intervention to prevent childhood obesity’ project[13].

Sure Start staff and families engage with the team. [We are currently using Facebook to interact but hope to return to face-to-face interactions when social distancing restrictions are relaxed]. (Now)

Monitoring data demonstrates that interactions with audiences at Sure Start centres influences our ways-of-working.

Grace Grove (research lead), Katherine Baker (PPI/E project lead)

Aim 2: Build a culture that respects different perspectives, values contributions and supports mutually respectful and productive relationships (UK Standard Working Together)

Objective: Involving the public in decisions about how we work together

Activity

Success Criteria/Milestone

Measured by

Monitored by

Public are involved in discussions about how we will work together, including who should be involved, what that involvement looks like and how we work together.

Public members feel they have a role in defining how we work together. For example, for 2021 we will focus on listening to and acting on public ideas about working together digitally and any blended approaches (ie combining face-to-face and virtual) as we adapt to changing circumstances (e.g. social distancing and/or travel restrictions easing).

Informal feedback from public members. Public member surveys (annual).

 

WISeRD

Objective: There will be systems in place to support situations where working together is not going as well

Activity

Success Criteria/Milestone

Measured by

Monitored by

Implement an induction process (for staff and public) that outlines the support structures, introduces the PPI/E team and identifies a point-of-contact to raise concerns (typically the PPI Officer unless there is a conflict-of-interest).

Develop induction document (2021) and ensure all new staff and public receive a copy.

 

PPI/E monitoring data.

WISeRD

Public and staff understand the support structures available to them at ARC Wessex, including their point-of-contact. 

Staff (2021, 2023) and public surveys. Informal feedback.

WISeRD

Implement a clear escalation and safeguarding policy.

Develop escalation and safeguarding policy (2021).

 

Policy published.

Executive Leadership Group

Aim 3: Provide health research communities of Wessex (including public) adequate PPI/E training, support and learning opportunities at the right time for their project/programme and/or their own development needs (UK Standard Support and Learning).

Objective: Provide public mentorship to researchers

Activity

Success Criteria/Milestone

Measured by

Monitored by

Complete 1 year pilot (2020-21) which pairs our PhD students with a public mentor to strengthen PPI/E in research and develop students’ experiences of working and communicating with members of the public.

Evaluate public mentorship scheme with PhD students.

Identify next steps (any adaptations needed, potential for roll out to other early career researchers).

Data from scheme evaluation forms. PPIE monitoring data.

Academic Career Development Group [14]

 

Objective: Delivering an ongoing programme of training and learning events

Activity

Success Criteria/Milestone

Measured by

Monitored by

Host seminars and webinars that introduce topics (e.g. introduction to PPI/E, what is a co-applicant).

 

Develop following courses for public members (2021) - deliver annually thereafter:

●      Public confidence training (public);

●      What is a co-applicant? (course topic selected following an increase number of requests from public members for support in this area).

Deliver annually:

●      3 ‘introduction to PPI/E’ seminars/webinar (public and researchers);

●      Skills-based training in PPI/E (predominantly for researchers);

●      Presentation skills (public and researchers).

PPIE monitoring data and evaluations of training and events.

WISeRD and

Academic Career Development Group

 

 

Offer training courses that upskill the research community (including the public).

 

Objective: Resources to support high quality PPI/E made available 

Activity

Success Criteria/Milestone

Measured by

Monitored by

Internally created PPI/E resources publicly available on ARC Wessex website.

Resources published or signposted to from PPI/E pages of ARC Wessex site.

Monitoring data from website usage (e.g. clicks, downloads). Staff and public member surveys.

PPI Officer and Communications and Partnership Manager

Clear signposting to external resources from ARC website.

Objective: Tailor support to the needs of our public partners

Activity

Success Criteria/Milestone

Measured by

Monitored by

Peer mentoring offered to public members.

 

PPI Champions (public members of WISeRD) define a process to offer peer support amongst ARC Wessex PPI/E public community (2021).

Peer mentoring scheme set up (2022).

PPIE monitoring data.

WISeRD

Opportunities given for our public members to discuss their support and development needs.

Training needs analysis offered to PPI Champions (2021). Rolled out to 10 more public members in 2022, and expanded further in 2023.

PPIE monitoring data.

WISeRD

Objective: Provide platforms to share and learn

Activity

Success Criteria/Milestone

Measured by

Monitored by

Provide spaces for the community to share best practice, exchange knowledge and discuss PPI/E challenges across Wessex health and care infrastructure.

Host two shared-learning half-day events each year.

Shared learning events evaluation forms. Staff and public surveys.

WISeRD

Offer informal coffee mornings for staff working in PPI/E across Wessex to come together for peer support.

PPI/E staff across Wessex feel they have good peer support.

Attendance monitoring data. Staff surveys.

WISeRD

Share our experiences and learnings with the wider research community.

Monthly dissemination (through either blog posts, social media, conferences, regional/national meeting, videos or publication).

Monitoring data about dissemination.

WISeRD

Aim 4: Involve the public at strategic and operational levels, ensuring best practice and supporting research transparency (UK Standard Governance).

Objective: Support, grow and develop WISeRD (our existing strategic PPI/E group).

Activity

Success Criteria/Milestone

Measured by

Monitored by

Maintain WISeRD membership.

Each theme retains representation from the public (termed PPI Champions) and researcher from each research theme (termed staff links).

PPIE monitoring data.

Executive Leadership Group

Provide space at WISeRD meetings to identify opportunities and areas for learning or improvement across ARC programme.

Remit of WISeRD continues to expand.

 

PPIE monitoring data.

Executive Leadership Group

Objective: Include the public voice at all levels of the ARC programme.

Activity

Success Criteria/Milestone

Measured by

Monitored by

Continue to include public voices in funding decisions. This includes:

·       All peer review processes to include a public reviewer;

·       PPI/E representation at award panels.

Public peer review continues for all our funding decisions and applications.

Where applications have not met the expected standards for PPI/E, satisfactorily addressing issues will be a criterion for making the award. 

PPI/E monitoring data.

 

Executive Leadership Group

PPI Champions to attend theme meetings and stakeholder forums.

PPI Champions report they feel a fully integrated part of the theme.

PPI/E Champion feedback.

Executive Leadership Group

Maintain representation of public members on the ARC Partnership Board[15].

Public members with governance roles feel heard and included.

Public member feedback.

Executive Leadership Group

Activity

Success Criteria/Milestone

Measured by

Monitored by

Capture the priorities and needs of the wider population (outside of those individuals we are already working with) to inform theme priorities and funding applications.

In 2022/23 the PPI/E team will support a theme to deliver a large scale consultation across the relevant communities of Wessex. In 2023/24 we will deliver consultations across the other themes.

PPI/E monitoring data.

Theme management (with Executive Leadership Group)

 

Aim 5: Use innovative approaches and good communication to expand the reach of our activities, maximising impact by stimulating knowledge-of, and interest-in, our research (UK Standard Communications).

Objective: Opportunities are reaching all audiences across Wessex.

Activity

Success Criteria/Milestone

Measured by

Monitored by

Dissemination methods identified (2021) to share information across the Wessex community.

Materials produced in different formats.

Information shared across multiple channels.

New (to PPI/E or just to ARC Wessex) public members coming forward for opportunities. 

PPIE monitoring data.

PPI/E Team and Communications and Partnerships Manager

Information shared by ARC Wessex at earliest opportunity, with deadlines that recognise that there can be a delay in dissemination when sharing through platforms and channels managed externally.

Personalise communications to individuals’ preferences and needs. 

System implemented to identify, document and meet individuals’ preferences and access requirements.

PPIE monitoring data.

WISeRD and Communications and Partnerships Manager

Objective: Feedback processes exist for our PPI/E activities.

Activity

Success Criteria/Milestone

Measured by

Monitored by

Embed two-way feedback into all PPI/E activities. This includes public members reporting on their experiences of taking part in an activity, and researchers feeding back on the difference the activity made.

We will collect a baseline measure of how regularly opportunity to provide feedback is provided (2021). We expect the frequency to grow year on year (targets for this will be set after baseline is determined).

Public member surveys.

PPIE monitoring data.

 

WISeRD

Aim 6: Capture, monitor and share learnings to feedback to those involved, avoid duplication, contribute to the evidence base and build our academic PPI/E (UK Standard Impact).

Objective: Impacts of our PPI/E activities are captured

Activity

Success Criteria/Milestone

Measured by

Monitored by

Use PPI/E impact tool to capture the impact of the PPI/E teams activities. This tool uses logic modelling and the theory of change[16] to capture outputs, outcomes and impacts of PPI/E.

Impact tool adapted for use to monitor the PPI/E Team activities (2021).

Monitoring data.

Executive Leadership Group

Provide training and resources to researchers in how to capture and monitor impacts of PPI/E.

20% of projects formally capturing their PPI/E impacts in 2022, rising to 40% in 2023.

Monitoring data.

Executive Leadership Group

[1] Wessex includes Dorset, Hampshire, the Isle of Wight and South Wiltshire.

[2] ARC stands for Applied Research Collaboration. They support applied health and care research that responds to, and meets, the needs of local populations and local health and care systems.

[3] INVOLVE was a national coordinating centre for public involvement in health and care (until March 2020). A new Centre for Engagement and Dissemination aims to build on the work of INVOLVE.  

[4] Collaborations for Leadership in Applied Health Research and Care

[5] National Institute for Health Research

[6] Any organisation that provides NHS services

[7] The standards are a framework for what good public involvement in research looks like.

[8] ARC Wessex has four research themes: Ageing & Dementia; Long Term Conditions; Healthy Communities and Workforce and Health Systems. Found out more on our website.

[9] Underserved is the term we have chosen to use to describe people who are less well included in research. It is important to recognise that underserved groups are context-specific. There is no single, simple definition to describe all underserved groups.

[10] The Microsoft Accessibility Checker is a free tool available in Office 365. It finds most accessibility issues and explains why each might be a potential problem for someone with a disability. It also offers suggestions on how to resolve each issue.

[11] The equality impact assessment is a systematic and evidence-based tool, which enables us to consider the likely impact of work on different groups of people.

[12] Operational leadership group.

[13] This project aims to test how feasible and acceptable a childhood obesity prediction tool is.

[14] The Academic Career Development Group in ARC Wessex is focused on building capacity and capability within the health and care system. 

[15] The ARC Partnership Board is a decision-making body for ARC Wessex.

[16] A theory of change is a description of why a particular way of working will be effective, showing how change happens in the short, medium and long term to achieve its intended impact. Logic models are a way to graphically represent this theory.

Resources

Our PPI/E team, in partnership with our research community (including public and researchers), will deliver the programme. A Lead for PPI/E will oversee delivery. A Communications & Partnerships Manager, Administrative Officer and a PPI Officer support them.

A dedicated PPI/E budget will support:

  • expense and time reimbursement for public contributing to our work;
  • training costs required to support public in their role;
  • consumable and facilities costs relating to PPI/E events, including training events;
  • development and testing of new initiatives.

This is in addition to PPI/E budgets set out within each research project, and academic career development awards.

Partners and collaborators

We will work closely with involvement, engagement and communications teams in our partner charities, health and care providers and higher education institutions. This will enable us to maximise opportunities, minimise duplication and create economies-of-scale.

Our public engagement activities will benefit from University of Southampton’s experienced Public Engagement in Research Unit, Public Policy Unit (connects with policy advisors and central government) and LifeLab (working with young people to engage them with research).

Consolidated funding for our Lead for PPI/E facilitates strong cross-organisational working. This Lead person manages a PPI/E team working across University Hospital Southampton, including the Wessex PIN and other NIHR infrastructure (Southampton BRC[17] and CRF[18]). 

Reporting and monitoring

An annual plan is written each year that covers progress to date and plans for the next year (see footnote for full detail[19]). The plan is developed by the Lead, with input from WISeRD, and approved by the ARC Director.

Progress against our milestones are reported to:

  • WISeRD at our meetings (every two months).
  • The Executive Leadership Group (every two months). Rolling theme updates (including PPI/E) are a standing item. The Lead for PPI/E provides a formal update annually and given additional time on the agenda to discuss items as required.
  • The ARC Director at meetings with the PPI/E team (twice a year).
  • The ARC Partnership Board (twice a year) as part of the progress reports submitted to board members.
  • CCF[20] via the formal annual reporting structures (once a year).

[17] Biomedical Research Centre

[18] Clinical Research Facility

[19] PPI/E annual plan covers: progress against last year’s objectives and the wider strategy; objectives, plans and milestones (with timescales) for the next year; plans for engaging our stakeholders; plans for dissemination and monitoring impact; cross ARC collaborations; plans for research and capacity building; leadership and management; finances

[20] CCF = NIHR Clinical Commissioning Facility. They manage and administer the ARC funding scheme