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Patient and Public Involvement and Engagement Strategy 2022-2027
Context and purpose
Our Clinical Research Facility (CRF) is based within Guy’s and St Thomas’ NHS Foundation Trust (GSTT), one of the NHS’s largest hospitals. We serve a rich and diverse inner urban London population through 3 of our hospital sites, St Thomas’ (Lambeth), Guy’s (Southwark) and since 2021, Royal Brompton (Chelsea).
We recruit more than 1 in 10 of all patients entering CRF trials nationally. Our research addresses a wide range of healthcare needs, from illness in the youngest children to diseases most common in the elderly. It succeeds by embedding facilities close to the clinical services caring for these patients, such as the purpose-built Cancer Centre, Evelina Children’s Hospital, and world-leading imaging capabilities across all sites.
Following a competitive application process in 2021, the CRF has also been awarded additional funding from 2022 until 2027 to continue its work. allowing us to expand to 5 research-dedicated units, to now include research for children and adults with chest diseases.
Involvement and engagement of patients and the public is crucial to ensuring as many people as possible benefit from vital clinical research and helps accelerate research to benefit even more of the local, national and global population. The purpose of this document is to therefore outline our CRFs vision for Patient and Public Involvement and Engagement and outline our objectives.
Terminology
Throughout this strategy there will be references to:
- Patient and Public Involvement (PPI) – Involving people in the design and conduct of individual studies and supporting the dissemination of research findings
- Public Engagement (PE) – Informing people about research, including disseminating study findings to participants and the wider public
Our CRF staff and facilities will support and deliver high quality experimental medicine in diverse aspects of human disease. Crucially underpinning this is the involvement of and engagement with patients and the public.
We will encourage and support patients and the public to actively participate at all stages of CRF studies. This will include the design of individual trials, contribution to study governance and oversight, and to dissemination of study findings. This participation will provide researchers with the knowledge and tools to build PPI and PE into their own research activities.
This strategy outlines how we will achieve this vision and how collectively we will reduce health inequalities in our local communities and beyond.
In order to achieve our vision, we have defined a number of strategic objectives in key areas of collaboration with patients and with local and national colleagues. These objectives are built on a legacy of successful work carried out previously across our NIHR infrastructures and support provided to researchers.
We anticipate that over the course of the five-year CRF award there will be a need to develop and adapt, and so have focused our initial objectives on the early years of the award. We will continually publish updates on progress as well as new objectives identified through our ongoing work.
In assessing our performance against these objectives, we will reflect on the UK Standards for Public Involvement as well as our EDI Strategy (published separately).
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Governance and accountability
1.1. Establish a baseline by undertaking an assessment of our current activities against the UK Public Involvement Standards (Year 1)
1.2. Establish a dedicated CRF Research Advisory Group (RAG) comprising patients from CRF studies and members of the wider public which reflect the local community (Year 1)
1.3. Appoint patient members to our CRF Review Board and co-develop guidance on how patients can effectively input to the study review and approval process (Year 1)
1.4. With the CRF Advisory Group co-develop a scorecard for the PPIE performance of clinical research studies (Year 1)
1.5. Use the scorecard to undertake a retrospective review of performance to act as a baseline and facilitate improved PPIE for returning study teams (Year 2)
1.6. Establish relationships for two-way communication with the condition-specific public and patient advisory groups in the Trust and more widely across the local community and King’s Health Partners (KHP) (Year 2)
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Support and learning
2.1. Embed new CRF PPIE Manager (Year 1)
2.2. With the RAG co-develop and embed PPIE training into the induction process for new CRF staff and visiting researchers (Year 2)
2.3. Create PPIE Champions among the CRF staff who will be responsible for actively promoting PPIE amongst colleagues and visiting research teams (Year 2)
2.4. Establish an online PPIE awareness tool for researchers freely available across the Trust and more widely across KHP (Year 3)
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Evaluation and impact
3.1. Create and maintain a database of all PPIE activity on new CRF Studies particularly capturing the changes, benefits and learning gained from the insights and experiences of patients, carers and the public (Year 2 onwards)
3.2. Survey and evaluate reasons patients, public and researchers engage and disengage with PPIE, and identify strategies to support maintenance of engagement (Year 4)
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Engagement and communications
4.1. Establish a new dedicated NIHR Guy’s and St Thomas CRF website to include and showcase our PPIE strategy and activity (Year 1)
4.2. Establish dedicated and innovative communication channels and awareness tools e.g. social media, newsletters showcasing CRF opportunities and successes, to increase participation in CRF-delivered clinical studies (Year 2)
4.3. Establish links and collaborate with clinical groups in the wider Trust, the Guy’s and St Thomas’ Charity, the South London Clinical Research Network (CRN), King’s College London (KCL) and KHP colleagues to understand what established activities are taking place in the local community. Design and embed a clinical research component within these (Year 2), before participating in at least 2 engagement events (Year 3)
Our performance against the above objectives will be monitored internally through staff operational meetings, as well as at the CRF Management Board. Updates including impact case studies will be published regularly on our website as well as being showcased to CRF visitors through printed materials. An annual review of our progress and performance against our strategic objectives will be established and the outcomes used to update, amend and add to our objectives shown above.
Following the successful award the CRF has appointed a dedicated PPIE manager for the first time. Reporting in to the CRF business and operations manager, the PPIE manager works across all five arms of the CRF and is the key contact for all aspects of PPIE for both researchers, patients and the public.
The current PPIE manager is Jacintha McGahon.
Email: [email protected]
In addition to the core team we will establish a CRF Research Advisory Group (RAG) consisting of patients and members of the public and work collaboratively with other internal condition specific patients groups, other local CRFs such as NIHR South London and Maudsley Clinical Research Facility at King's and national partners through the UKCRF Network and the Networks PPIE theme group.
We will work closely with the following groups:
- CRF Research Advisory Group (RAG)
- GSTT Research and Development team
- GSTT Patient Experience team
- GSTT Equality, Diversity and Inclusion team
- South London Clinical Research Network (CRN)
- NIHR Research Design Service (RDS), London
- The King’s College London Widening Participation Committee
- Relevant KCL PPIE Groups and Teams
- Clinical Commissioning Groups (CCG) in South East London
- Local Community Groups
- The UK Clinical Research Facility Network
- Allied local NIHR research infrastructure e.g. Experimental Cancer Medicine Centre
- Other NIHR CRFs and BRCs
Equality, Diversity and Inclusion (EDI) Strategy 2022-2027
Context and purpose
Our Clinical Research Facility (CRF) is based in one of the NHS’s largest hospitals, and we serve a diverse inner London population at three of our hospital sites, St Thomas’ (Lambeth), Guy’s (Southwark) and since 2021 Royal Brompton (Chelsea).
We recruit more than 1 in 10 of all patients entering CRF trials nationally. Our research addresses a wide range of healthcare needs, from problems in the youngest children to diseases most common in the elderly. It succeeds by embedding facilities close to the clinical services caring for these patients, such as our world-leading imaging capability, Evelina London Children’s Hospital and Guy’s Cancer Centre. Involvement and engagement of patients and public provides essential guidance of our future research priorities.
We have recently expanded to 5 research-dedicated units, now offering more trials to children and to adults with chest diseases. This will be coordinated with central governance and management, which for example provided the flexibility to deliver rapid support for COVID trials in 2020. We recruited very effectively to coronavirus treatment trials and vaccines but were also able to protect essential research benefitting other patient groups.
Following a competitive application process in 2021, the CRF has also been awarded additional funding from 2022 until 2027 to continue its work. The purpose of this document is to outline our CRFs vision for Equality, Diversity and Inclusion (EDI) and outline our objectives. This strategy has been developed in line with the broader organisation-wide EDI Strategy at Guy’s and St Thomas’ NHS Foundation Trust.
Our hospitals serve some of the most ethnically diverse and socio-economically deprived communities in the country however participation in clinical research may not always be reflective of those receiving care. Our vision is to widen the diversity of participants in CRF-delivered and -supported clinical trials to match those that live and receive care in our local community. Our vision for more inclusive opportunities for patients to be involved in and participate in research is also informed by and feeds into our counterpart PPIE strategy (published separately).
Our workforce also needs to represent our EDI ambitions and lead, through representation, on the creation of an equal, diverse and inclusive work culture that benefits all and is an inspiration to our local community to embrace research. Our CRF workforce is already diverse in terms of ethnicity, religion and gender. We will ensure that everyone has equal opportunities to join our team through fairer recruitment and that all our staff are able to learn, contribute, develop and progress in their roles in a way that best suits them.
In order to achieve our vision we will work towards the following overarching strategic aim:
A truly equal, diverse and inclusive workforce that inspires an equally diverse community to embrace and participate in research.
In order to achieve this we will work towards a number of strategic objectives. Through discussions with staff and patients we have agreed an initial approach of diagnosing and understanding our strengths and weaknesses with regards to EDI. We will use these as the basis for the development of approaches and actions to meeting our strategic objectives. Furthermore, our Trust EDI Strategy has a core theme of Anti-Racism so our initial objectives have a focus on ethnicity but other protected characteristics will also remain part of our vision.
Our work in this area will co-ordinate with and be informed by national strategic initiatives in this area, as directed through the UKCRF Network and NIHR.
Underpinning all our objectives is the requirement to achieve tangible and measurable outcomes. We have developed the following objectives with an initial focus on generating data. We will then reflect on these data as a team and use the results to review strategic objectives as necessary, and to target appropriate projects as we progress through our award.
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Data and metrics for inclusive research
Ownership: CRF director, CRF matrons and CRF operational managers
1.1. Establish baseline EDI metrics (patients and workforce) by undertaking a recognised assessment (Year 1)
1.2. Collect multi-layered data on ethnicity in the local population in general (Year 1) and for patients receiving care in our facilities for our key therapeutic areas (Year 2)
1.3. Create a standardised set of metrics on patient screening and recruitment diversity for CRF led studies benchmarked against the patient population (Year 1)
1.4. Publish the first annual set of metrics on our performance (Year 2)
1.5. Progress to a more mature level of EDI (Year 5) through annual review of our progress and the adaption of our projects and actions to increase our momentum of EDI maturation
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EDI in the workplace
Ownership: CRF matrons and CRF operational managers
2.1. Begin establishing a leader-led culture of EDI by mandating senior leaders in the department to undertake local EDI training on unconscious bias, micro-aggressions and allyship (Year 1) and through a workshop create a framework for ensuring that training results in competency through practice (Year 2)
2.2. Where systems allow and consent is provided, maintain data on the ethnicity, gender and age of the workforce (both current and new starters) and extend this to applicants to vacancies and new roles within our CRF (Years 1 and 2 respectively)
2.3. Embed EDI awareness in the CRF workforce and introduce relevant mandatory training as part of our induction process and annual appraisal process (Year 2)
2.4. Express interest in and host an international nurse as part of the International Association of Clinical Research Nurses (IACRN) and UKCRF Network study visit programme (Year 1/2)
2.5. Create a local CRF forum for CRF staff and inclusion agents to reflect, present and engage CRF leadership in issues of EDI (Year 1)
Our performance against the objectives will be monitored internally through operational team meetings and as a regular agenda item at CRF management board meetings. Activities, progress and outcomes and will be published on our website on a regular basis as well as being showcased within the CRF through printed materials and events.
Our EDI objectives will be owned by our leadership and management team but we will expect all of our CRF team to be mindful of EDI in their roles and to contribute.
We will work in partnership with our Trust EDI team, staff networks and R&D inclusion agents to identify and tackle gaps identified in our EDI culture.