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

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.

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.

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.

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.

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.

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.

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.

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

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.

Governance, committees and groups

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

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.

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.

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.