NIHR Birmingham BRC-CRF Joint Patient and Public Involvement and Engagement Strategy 2022-2027

1. Introduction

The strategy sets out the aims of the National Institute for Health and Care Research (NIHR) Biomedical Research Centre (BRC) and Clinical Research Facility (CRF) to work in true partnership with people and communities with lived experience of health conditions and services. These aims reflect a value-based approach to ensure that our research and innovations to improve healthcare are informed and shaped by public insight and experiences, in greater partnership with local, regional and national communities, and in a spirit of working together in co-production. A focus for the CRF will be to learn from the experience of research participants, supported by the NIHR Clinical Research Network Participant in Research Survey (PRES), to inform the design and acceptability of future studies.

2. Background

This strategy builds upon a strong base for Patient and Public Involvement and Engagement (PPIE) developed during the first iteration of the NIHR Birmingham BRC and CRF and since enhanced by the broader set of research teams (including the public contributors they work with) and our new partnerships with NHS Trusts (Birmingham Community Healthcare, Birmingham Women and Children’s Hospital and Sandwell and West Birmingham) and Universities (Keele, Aston and Oxford).

By 2018, the BRC had 3 PPIE groups linked with the original research Themes, each one focussed on a particular disease. Over time, the groups grew in numbers, diversity and confidence. Each one was permanently represented by a lead contributor at Executive level. They worked closely with the PPIE Manager to develop the PPIE strategy, support, communication, diversity and inclusiveness of their own groups and the BRC at large. Similarly, the Birmingham CRF has had a group of public contributors actively involved in its Scientific Advisory Committee, supporting decisions about which studies to adopt and improving the experience of research participants.

Through our close links with University, NHS and NIHR infrastructure, we have formed supportive relationships to advance PPIE in research. We are also developing stronger links with local authorities and Voluntary, Faith, Community and Social Enterprise (VFCSE) organisations. Of note is our work in addressing the racial equity of PPIE. Alongside Keele, the Birmingham BRC has led the way in piloting and adopting the NIHR Race Equality Framework.

We have established a firm foundation on which we, together with our public partners, can now build an even larger and stronger BRC and CRF able to deliver the benefits of translational research to people regionally, nationally and globally.

3. How this Strategy was developed

This Strategy was developed by PPIE practitioners, public members and researchers during workshops and meetings over three months. A full description of how this Strategy was developed is available in Appendix 1. The Strategy has been informed by additional contributions through live workshops, ‘padlets’ (an online noticeboard for sharing posts and comments) emails and other meetings of the Race Equality Framework pilots’ sites. This reflects a commitment to developing PPIE ‘from the bottom up’ and to building upon the elements that have produced the BRC and CRF’s excellent track record to date. This strategy expresses the values of those involved in its development and will form the foundations of our PPIE activities. Without these values and the widespread presence of those who continually strive to embed them in their work, structures and processes are empty vessels.

4. Our definitions

This Strategy includes both Patient and Public Involvement and Public Engagement with research. We use the following definitions:

  • Involvement: Research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them (from NIHR)
  • Engagement: The myriad of ways in which the activity and benefits of research can be shared with the public. Engagement is by definition a two-way process, involving interaction and listening, with the goal of generating mutual benefit (from National Coordinating Centre for Public Engagement).
  • Public contributor: people (including carers) with lived experiences of health conditions and care systems who are actively involved in research studies.
  • PPIE practitioner: researchers and staff who facilitate the engagement and involvement of patients and the public with research
  • Racial competency in PPIE: Racial competence is the ability to recognise and check one’s own bias; interact with racial diversity in a positive manner; and have open and honest conversations about race in ways that show a willingness to hear, learn and take action. Racial competence means understanding the impact of structural racism and fostering a culture of allyship that challenges organisational practices and behaviours that exclude Black African-, Asian- and Caribbean-heritage people and other racialised groups. Being racially competent means translating our statements into action to promote equity of voice and equality of opportunity.

5. Our vision

Improving innovations in healthcare and patient outcomes through public insights and experience

The NIHR Birmingham Biomedical Research Centre and Clinical Research Facility will host high quality research that is informed by patient/public insights and experience, focus on questions that reflect direct patient need national and locally, and respect all aspects of community diversity. We will build mutually beneficial partnerships with the public in ways that reflect the priorities of people who we engage with.

Four public contributors

6. Our values

Our purpose is to ensure that meaningful and supported PPIE is core to the quality and impact of our research for the benefit of patients, carers and the public. To achieve this, our approach is based on the important values of co-production. NIHR defines co-production as research that:

Shares power: Our research strategy will be jointly owned and people work together to achieve a joint understanding

Includes all perspectives and skills: We will provide fair, open and inclusive opportunities for involvement and engagement at the earliest opportunity and throughout BRC and CRF activities

Respects and values the knowledge of all those working together: We will be respectful and responsive to public views and contributions. Everyone’s views and contributions of are of equal importance.

Enables reciprocity: We will enable involvement and engagement opportunities that are engaging, stimulating and mutually beneficial

Builds and maintains relationships: An emphasis on relationships is key to sharing power. We will be public- and community- focussed, taking the time to develop trusting relationships with underserved communities

This means going beyond consultation (where public contributors are asked for their insight, ideas and advice). Instead, we will do things together to combine everyone’s skills and expertise. We will follow NIHR guidelines on co-production to make sure that we work together in beneficial ways.

7. Strategic aims

Across the BRC and CRF, we will seek to achieve six Aims (Figure 1). These support the ambitions of the NIHR Going the Extra Mile 10 Year Strategy (2015-25) report and the current NIHR Strategic Priorities for Public Partnership. Where relevant, we will ensure alignment with our Equality, Diversity and Inclusion (EDI) strategy, and other BRC activities supporting research culture, capacity development and communication. We will continue to implement the learnings from the NIHR Race Equality Framework for Public Involvement in Research. We support the Health Research Authority’s Shared Commitment to public involvement.

Aim 1

EQUALITY, DIVERSITY & INCLUSIVITY

Guided by the NIHR Race Equality Framework, create an inclusive environment for PPIE where our work can be shaped by the diverse communities we serve

Aim 2

CONNECTING COMMUNITIES

Strengthen collaborations with patient and community groups. Continue to share good practice, learning and innovations in PPIE

Aim 3

IMPROVING RESEARCH LEADERSHIP AND GOVERNANCE

Promote equality of public voice in all research leadership and governance structures, with public involvement at every level of oversight

Aim 4

EFFECTIVE LEARNING AND SUPPORT

Ensure that all receive high quality learning opportunities and support to enable effective involvement and engagement with the public

Aim 5

COMMUNICATE CLEARLY

Enable meaningful conversations and knowledge exchange with patients and community groups, especially those from under-represented groups

Aim 6

MAKING A DIFFERENCE

Recognise and celebrate the difference made by the public to the BRC and CRF, its research, and on the public themselves

8. Our objectives

Each Strategic Aim has several objectives. Our objectives describe how we will achieve our Strategic Aims for involving and engaging the public in BRC and CRF. To ensure quality in our approach, we have identified how the UK Standards for Public Involvement will guide our activities. An accompanying Delivery Plan will be developed in due course. We have included a date of when we first expect to achieve each objective. However, most of the objectives relate to good practice that we will aim to deliver throughout the duration of the BRC and CRF contracts.

To encourage consistency and collaboration between regional NIHR infrastructure, NHS, academic, local authority and Voluntary, Faith, Community and Social Enterprise (VFCSE) organisations active in research, we are keen to align strategies across NIHR organisations, in support of a 1-NIHR approach to working together. As such, this strategy complements the PPIE strategies for the NIHR Applied Research Collaboration (ARC) West Midlands and NIHR Blood & Transplant Research Unit (BTRU) in Precision Cellular Therapeutics. It aligns with the NIHR School for Primary Care Research PPIE strategy (Keele); the School for Public Health Strategy (PHRESH in the West Midlands) and the Research Design Service WM strategy. We will continue to work closely with other NIHR organisations to adopt a harmonised regional approach to PPIE.

STRATEGIC AIM 1 – DIVERSE & INCLUSIVE INVOLVEMENT

What we hope to achieve

Guided by the NIHR Race Equality Framework, to create an inclusive environment for PPIE where our research priorities and study questions can be shaped by the diverse communities we serve

UK Standard on Public Involvement that will guide our work

INCLUSIVE OPPORTUNITIES

  • Offer public involvement opportunities that are accessible and that reach people and groups according to research needs
  • Research to be informed by a diversity of public experience and insight, so that it leads to treatments and services which reflect these needs

What we will do to achieve our AIM

Objectives for Strategic Aim 1

  • Share and implement learnings from the NIHR Race Equality Framework pilot at Keele and Birmingham, and the NIHR Equality, Diversity and Inclusion Strategy 2022-2027 to inform our approach to improve the equality, diversity and inclusion of involvement and engagement with all protected characteristics (Objectives 1.2 to 1.5) (Dec 2024 and ongoing)
  • Address barriers to engaging and involving people from underserved communities (Dec 2024, ongoing)
  • Have open, transparent and inclusive processes for recruiting new public contributors (Dec 2024)
  • Be flexible and creative in the ways that researchers engage with the public and in how public contributors are involved in studies (ongoing)
  • Collaborate with our regional partners to share opportunities for involvement widely and inclusively, including the co-development of PPIE recruitment materials (July 2025)

STRATEGIC AIM 2 – CONNECTING COMMUNITIES

What we hope to achieve

To develop and strengthen collaborations with patient and community groups. We will also continue to share good practice, learnings and innovations in PPIE through regional and national partners

UK Standard on Public Involvement that will guide our work

Working Together

  • Work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationship
  • Public involvement in research is better when people work together towards a common purpose, and different perspectives are respected

What we will do to achieve our AIM

Objectives for Strategic Aim 2

  • Support a diverse and engaged community of public contributors from across the BRC/CRF to:
    • share opportunities for involvement with community partners
    • co-produce initiatives to improve the experiences of public contributors and research participants (Dec 2023, ongoing)
  • Increase the extent of patient and public involvement in research across the BRC and CRF (Dec 2023, ongoing)
  • Improve understanding of the purpose, responsibilities and expectations related to PPIE, by encouraging and innovating best PPIE practice (ongoing)
  • Work with regional and community partners to explore opportunities for joint engagement activities and research showcase events with communities that:
    • sustain new and diverse patient/community partnerships
    • build research awareness
    • share learnings from our PPIE activities widely to improve the future practice and impact of PPIE (July 2024 and ongoing)

STRATEGIC AIM 3 – IMPROVING RESEARCH LEADERSHIP AND GOVERNANCE THROUGH PUBLIC INVOLVEMENT

What we hope to achieve

To promote equality of public voice in research leadership and governance structures, with public involvement at every level of oversight

UK Standard on Public Involvement that will guide our work

GOVERNANCE

  • Involve the public in research management, regulation, leadership and decision making
  • Public involvement in research governance can help research be more transparent and gain public trust

What we will do to achieve our AIM

Objectives for Strategic Aim 3

  • Have visible leadership and realistic resources for PPIE within the core BRC/CRF and at the theme-level governance and research activities (Dec 2023)
  • Support public contributors as equal members of all relevant BRC and leadership and oversight committees (Dec 2026, ongoing)
  • Support Chairs of leadership and oversight committees to enable inclusivity and equity of public contributors in research governance (Dec 2026, ongoing)
  • Support research leaders in race competency in relation to PPIE in their studies (Dec 2025)
  • Monitor and review this PPIE Strategy and plans regularly (June 2024, ongoing)

STRATEGIC AIM 4 – EFFECTIVE SUPPORT AND LEARNING

What we hope to achieve

To ensure that researchers, public contributors, PPIE practitioners
and community partners receive high quality learning opportunities and
support to enable meaningful PPIE

UK Standard(s) on Public Involvement that will
guide our work

SUPPORT AND
LEARNING

  • We will support learning and skill-building in
    relation to PPIE
  • We seek to remove practical and social barriers that stop members of the public and research professionals from making the most of public involvement in research

What we will do to achieve our aim

Objectives for Strategic Aim 4

  • Assess the learning and support needs of public contributors when they first join the BRC and annually
    thereafter (May 2024)
  • Co-create an accessible programme of training in different formats for all public contributors and BRC/CRF-related researchers (Dec 2025)
  • Share best practice for supporting public members engaged and involved in research, including exploring options for a harmonised payment policy across the BRC/CRF (ongoing)
  • Improve equality, inclusivity and diversity awareness related to PPIE, including the racial and cultural competency of researchers and public contributors through training and sharing learning from the Race Equality Framework pilots (aligned with EDI and capacity development) (Dec 2025)
  • Support a vibrant research culture for PPIE across the BRC and CRF through learning and sharing good practices and successful initiatives (ongoing)

STRATEGIC AIM 5 – COMMUNICATE
CLEARLY

What we hope to achieve

To enable meaningful conversations and knowledge exchange with patients
and community groups, especially those from under-represented groups

UK Standard on Public Involvement that will guide
our work

COMMUNICATIONS

  • Use plain language for well-timed and relevant communications, as part of involvement plans and activities
  • Communicate with a wider audience about public involvement and research, using a broad range of approaches that are accessible and appealing

What we will do to achieve our aim

Objectives for Strategic Aim 5

4

  • Co-develop a clear communication
    plan for PPIE
    (linking with the main BRC Communication
    Strategy) to enable ongoing engagement, conversations and knowledge exchange
    opportunities with communities and individuals from across the region (May
    2024)
  • Use a range of inclusive and flexible communication methods with our local communities, with a specific focus on South Asian communities (May 2024)
  • Address the communication needs and preferences of individual public contributors, including co-developing tools for encouraging research teams to feedback to public contributors in a timely and regular fashion (Dec 2026)

9. Collaborators and Partners

National/international

  • National BRC PPIE Leads Working Group
  • NIHR Public Partnerships Board
  • NIHR Centre for Engagement & Dissemination
  • NIHR Race Equality Public Action Group (REPAG)
  • NHS Futures Public Engagement Community
  • Patients for Medicine Development (PFMD)

Regional

  • Voluntary, Faith, Community, Social Enterprise (VFCSE) Groups
  • West Midlands regional network for PPIE: Public Involvement for Lay Accountability in Research (PILAR network)
  • Newly funding NIHR West Midlands Community Engagement Hub
  • 1-NIHR (all regional NIHR infrastructure)
  • Midlands Health Innovation; Midlands Health Alliance
  • NHS and local authorities

BRC and CRF

  • PPIE Leads and public contributors within partners institutions
  • Communications working group
  • Keele Impact Accelerator Unit
  • EDI working group
  • UHB/UoB Patient and Public Involvement in Research Network

10. Work programme

A full work programme linked to each of the objectives will be developed in the Delivery Plan. This will include a detailed list of activities and initiatives, and timelines, per objective.

11. Delivery and success

Aim

Success criteria

Measured by

Monitoring

1. Create an inclusive environment for PPIE where our research priorities and study questions can be shaped by the diverse communities we serve

Diversity in the communities that researchers engage with, and public contributors involved in shaping research and its delivery

Monitoring data on all BRC and CRF research projects and core PPIE work

PPIE Leadership Group (quarterly)

ED&I and Research Culture Working group (annually)

Effective processes for collating demographics and protected characteristic information on PPIE by October 2024

Monitoring adoption with central BRC/CRF and theme-level PPIE activities

PPIE Leadership Group (quarterly)

ED&I and Research Culture Working group (annually)

Public members and community partners feel that our approaches to engaging and involving them are inclusive and equitable

Evaluation of inclusive practice at every engagement event

Routine evaluation of inclusive involvement practice for individual studies (on an annual basis or at least once occasion)

BRC/CRF Public Advisory Group (on going)

ED&I and Research Culture Working group (annually)

Communities feel listened to, respected and valued

Feedback and case examples

PPIE Leadership Group; Race Equality Ambassador

2. Develop and strengthen collaborations with patient and community groups

A new supported community of public contributors across the BRC and CRF

Monitoring data about the number of public contributors within the community and communications with the community

PPIE Leadership Group (annually)

Increase in the number of diverse communities in contact with and engaged with the BRC and CRF

Case examples of diversity including BRC/CRF communications reach and outputs, event attendance

PPIE Leadership Group (annually)

Increase in the number of public involvement and engagement activities across BRC studies

Monitoring data on all BRC and CRF research projects and core PPIE work

PPIE Leadership Group (quarterly)

A new BRC/CRF community of practice of PPIE practitioners, public members and researchers

Community of Practice membership, agenda and minutes

PPIE Leadership Group (annually)

3. Promote equality in research leadership and governance structures

Equitable involvement of public contributors in research strategy oversight committees of the BRC and CRF

Use of role descriptions; informal and formal feedback from public contributors; case examples of approaches to support inclusivity and equity in research governance

BRC/CRF Public Advisory Group (quarterly)

PPIE Leadership Group (quarterly)

Executive committee (annually)

4. Researchers, public contributors and community partners receive high quality learning opportunities and support

Increase attendance/access to programme of mandatory and optional learning opportunities accessible for all BRC and CRF staff, public contributors, and community partners, year on year

Attendances to and feedback from learning opportunities

PPIE Leadership Group (quarterly)

Optional and subject to feasibility: At least 40% of BRC and CRF staff have received support on PPIE by 2024, 60% by 2026. This could be via seminars, inductions, volunteering or delivery of PPIE activity.

Monitoring data on core PPIE work in the BRC and CRF

PPIE Leadership Group (quarterly)

Academic Career Development Group (annually)

BRC and CRF Executive Groups (bi-annually)

Increase number of staff and public contributors reporting an increase in PPIE knowledge, skills and confidence year on year

Survey and interview at induction for new starters

Annual survey of BRC and CRF staff and public contributors

Follow up discussions with random sample of staff and public contributors

PPIE Leadership Group (quarterly)

Academic Career Development Group (annually)

BRC and CRF Executive Groups (bi-annually)

At least 30% BRC and CRF staff receiving race and cultural competency training

Attendance and feedback from training programme

EDI Working Group; Race Equality Ambassador (Keele)

All new public contributors receive an induction within 3 months of contact with the BRC or CRF

Attendances to and feedback from induction programmes

PPIE Leadership Group (quarterly)

Public Advisory Group (annually)

5. Create meaningful conversations and knowledge exchange with patients and community groups

Evidence of different approaches to communicating with public contributors and community partners

Case examples

Public Advisory Group (annually)

PPIE Leadership Group (quarterly)

More than 75% public contributors and community partners are satisfied with our communications

Annual survey of BRC public contributors and community partners

Public Advisory Group (annually)

PPIE Leadership Group (quarterly)

6. To recognise and celebrate the difference made by PPIE

Increase in the number of BRC and CRF publications reporting on PPIE (using the GRIPP2 checklist), year on year

Monitoring data on all BRC and CRF publications

Communications working group (quarterly)

PPIE Leadership team (annually)

At least 80% of BRC and CRF studies publish a plain language summary of its research, including the role of PPIE on the BRC website

Monitoring of BRC website content

Communications working group (quarterly)

PPIE Leadership team (annually)

Increase in number of BRC partners participating in the Insights | Public Involvement programme, year on year

Insights | Public Involvement team (Keele)

PPIE Leadership Group (annually)

Annual dissemination at local showcase, national conferences, regular blog posts and social media posts

Case examples

Communications working group (quarterly)

PPIE Leadership team (annually)

Delivery of 3 REPAG Community of Practice meetings, annually

Annual report to NIHR REPAG

Keele PPIE Team

12. Infrastructure and resource

Governance, committees and groups

Organigram of the BRC infrastructure, with committees and groups marked with different colours depending on the level of public and patient inclusion within them

Leadership and delivery staff

We will have an experienced, skilled and well-resourced team to oversee and deliver our PPIE activities, including:

University of Birmingham

  • PPIE Academic Lead – Steven Blackburn
  • PPIE Advisor – Angela King, public member
  • Strategic PPIE Lead – to be appointed
  • PPIE Manager/Operational Lead – Laura Chapman

Keele University

  • Academic BRC Lead – Krysia Dziedzic
  • Public Adviser – Kanta Sandhu, public member
  • PPIE Manager/Operational lead – Nicki Evans
  • Academic Lead INSIGHT | Public Involvement programme – Tony Fryer
  • PPIE Research Lead – Alice Moult
  • Race Equality Ambassador – Natalie Knight
  • PPIE Coordinator – Jeevanthika Rubasinghe
  • PPIE Support Worker – Asif Shivji
  • Knowledge Mobilisation – Laura Campbell

13. Reporting and accountability

We will report progress on the PPIE Strategy and Delivery Plan to the PPIE Leadership Group who in turn will be accountable to the BRC and CRF Management Committees. Progress updates will be shared with the BRC/CRF Central Public Advisory Group. The BRC/CRF Central Public Advisory Group Patient and Public Advisory Group will liaise with the Management and Leadership as required.

Acknowledgments

We are grateful to members of the BRC and CRF Community that contributed to this, including the BRC Theme Leads and researchers. We extend particular thanks to the seven public contributors who shaped the objectives over a series of co-development workshops in January and February 2023. Further thanks also to Angela King, our PPIE advisor, who chaired the co-development sessions so skilfully and thoughtfully, and whose kindness, wisdom and motivational support were instrumental in refining the Strategy.

Also, we’d like to thank our colleagues working in PPIE roles within other NIHR, NHS, and academic organisations in the West Midlands for their input and for supporting more regional harmonisation and collaboration in PPIE.

Appendix

Development of the BRC PPIE Strategy

The PPIE Academic Lead and the PPIE Manager worked with the Theme leads and the lead of the Clinical Research Facility (CRF) to develop an appropriate method and timeline for involving patient/public contributors in compiling a PPIE strategy that also encompasses our Equality, Diversity and Inclusion (EDI) needs.

As a result, they, our EDI lead and the PPI Adviser worked with seven people who are key members of our PPI groups to represent public/patients and work through our six strategic aims. These public contributors are leads of their respective groups or part of a significant project drawn from them, such as our Race Equality Framework team. We jointly agreed in our various introduction meetings that we would hold three x 2-hour virtual meetings with a short break, at mutually agreed times (mainly 6-8pm). All patient/public contributors were offered honoraria in line with NIHR guidance and were fully aware of the PPIE and EDI sections of the bid.

These workshops were facilitated by our skilled PPI Adviser, recorded for note-taking purposes and each discussed two of the six objectives, in numerical order. We used whole group presentations, followed by breakout rooms for more detailed discussions about each topic. We used Padlets to allow people to comment before, during and after the workshops. We used these comments to produce interim reports for attendees after each workshop, and ultimately to prepare our initial draft of the strategy.

Our contributors found Padlet a useful tool, despite having little previous experience of using it, and confidence in this method strengthened the positive impact of use of this tool and in the structure of the workshops.

Discussion of the initial draft Strategy at an Away Day with the BRC Manager, Lead for the CRF, EDI Lead, PPI Adviser and PPIE Practitioners led to the revised draft which was shared with everyone involved in co-production of it to that point, plus Theme leads.

We offered engagement in the process via a variety of methods, such as emails and in-person or virtual drop in sessions. This was prior to further revisions of the strategy before it was presented to the Birmingham BRC Director and Executive Committee for approval.

For further information about the NIHR BRC and CRF PPIE Strategy, please contact:

""

Steven Blackburn

Birmingham BRC Academic Lead for PPIE

s.blackburn.1@bham.ac.uk

Portrait picture of Laura Chapman

Laura Chapman

Birmingham BRC Public Involvement Manager

l.chapman.1@bham.ac.uk / Laura.Chapman2@uhb.nhs.uk

07824 841785