Equality, Diversity and Inclusion

NIHR Alder Hey CRF Equality, Diversity and Inclusion Strategy (2022-2027)

Vision

The NIHR Alder Hey Clinical Research Facility (AHCRF) is committed to ensuring equality, diversity, and inclusivity (EDI) are fully integrated into our service and culture.

The case for this is both moral (it is not fair if we don’t include some people but do include others) and scientific (if we only test medicines for children on certain limited groups, will the research answers be correct?).

To achieve this, we will undertake work in five themes based on areas related to our work, learning about where we can improve, implementing changes, checking to make sure it has made a difference, and teaching others about what has helped.

Foundations

Our strategy has been created in conjunction with the AHCRF Patient and Parent Involvement and Engagement (PPIE) strategy, and is informed by children, young people and families, as well as the NIHR and University of Liverpool (UoL) EDI strategies to ensure children and young people are central to all our efforts. The numbers and letters shown below are used throughout this EDI strategy to show where our plans, and NIHR/UoL strategies are aligned.

What we do

AHCRF is a specialist centre for testing potential new medicines for children and young people. This work is called “early phase” research. We have areas of particular expertise, and when we were last awarded funding from NIHR (2022) we summarised our work as shown below. Ensuring that we consider EDI was, and remains, one of the fundamentals upon which all our other work is built.

Alder Hey CRF Equality, Diversity and Inclusion Strategy

Everything we do is centred around the families we treat.

Our five strategic themes

Become a more inclusive funder of research.
Widen access for participation for greater diversity and inclusion.
Improve and invest in the NIHR talent pipeline.
Embed evidence-led diversity and inclusion approaches.
Collaborate with partners for impact and sustainability.

Our PPIE strategic objectives

Increasing sustainable capacity and capability
Broadening diversity
Continuous improvement of services
Embedding standards, reporting, feedback and evaluation

Where are we now?

Each theme within our EDI strategy has been reviewed by the AHCRF team and has been scored against our levels of maturity.

Compliance – we meet the minimum requirements, but want to improve
Discovery – we seek to address gaps in our practices
Committed – we start to embed EDI into our organisational strategy and increase focus on inclusive culture
Championed – with leadership engagement, EDI becomes part of our core values, goals and practices
Innovation – our inclusive culture becomes a pillar of our brand and we lead on best EDI practices

Themes

Our choice of themes was based on feedback from children, young people, families, and professionals, and they directly relate to the work we do.

Each theme represents an area where we are concentrating on improving EDI within AHCRF, and is backed up with a series of SMART (Specific, Measurable, Achievable, Relevant, Time bound) objectives. The themes are:

Access
Delivery
Study information
Education and training
Sharing best practice

Each objective we are going to achieve will be shown in the following format:

S – Specific: What we are going to do

M – Measurable: Checking we are doing it

A – Achievable: How the objective will be achieved

R – Relevant: Relevance of objective to Theme

T – Time-bound: Objective completion timelines

O – Owner: Individual(s) responsible for objective completion

Access

NIHR AHCRF research activity is currently undertaken almost exclusively within the hospital, disadvantaging children, young people, and families who may not be able to attend. To improve access, we commit to work to extend research delivery beyond the walls of the hospital.

Alignment to strategic objectives: NIHR: 2,4,5 – AHCRF: A,B

SMART objectives:

S – Appoint a research active General Practitioner as the primary care representative on the CRF Operational Group and CRF Senior Management Team

M – Confirm the primary care representative is appointed

A – Job description created and recruitment is completed

R – Provide perspectives from primary care

T – 31/08/2024

O – Primary care representative

S – Undertake at least one study that recruits patients from primary care (by end of year 2) and with a partner secondary care organisation (by end of year 3)

M – Review of study portfolio

A – Guidance from primary care representative

R – Extend our research beyond AHCRF

T – 31/08/24 and 31/08/25

O – Primary care representative

S – Seek funding for community research engagement events

M – Ongoing review at senior management meetings

A – Continual review of funding stream opportunities

R – Raise community awareness of clinical research

T – Ongoing

O – CRF Co-Directors

S – Demonstrate utility of new primary care partnership with one study co-delivered with primary care partner

M – Review at CRF Operational Group meetings

A – Guidance from primary care representative

R – Using the partnership to co-deliver a study will increase community access to research

T – 31/08/2025

O – CRF Director and Primary care representative

We will continue to work with the GenerationR Liverpool Young Person’s Advisory Group and Parent and Carer’s Research Forum to identify which studies are best delivered beyond the hospital walls.

Current maturity rating: ‘Discovery’.

Delivery

Participants recruited to research studies should be representative of the local and regional community. We will endeavour to recruit appropriately diverse, representative participants and we commit to implement changes based on these data.

Alignment to strategic objectives: NIHR: 2,4 – AHCRF: B,C,D

SMART objectives:

S – Audit study participation, to determine where inequalities in participation lie, and develop targeted recruitment strategies to address these (years 1-2)

M – Collect demographic data for study visits

A – Record demographic information (with patient/parent consent)

R – The data will help determine whether we are under or over recruiting from specific sections of the community

T – 31/08/2024

O – CRF Co-Directors, CRF Operational Manager

S – Implement the NIHR Race Equality Public Action Group (REPAG) action plan on AHCRF (years 1-2).

M – Included in AHCRF seniors meeting as standing agenda item and progress recorded in the minutes

A – Requires Divisional approval

R – Will help ensure that we consider race specifically in the context of research participants, improving the diversity of patients recruited

T – 31/08/2024

O – CRF Co-Directors, CRF Operational Manager, Physician Associate

S – Undertake meaningful community engagement to learn about the barriers to study recruitment (years 1-2)

M – Feedback to CRF Senior Management Team following community engagement events

A – Links with Trust groups, CRF PPIE groups, and Research Ambassadors

R – To be able to address barriers that prevent different communities from participating in research, we must first understand those barriers

T – 31/08/2024

O – CRF Director, PPIE Team, Physician Associate

S – Develop a checklist to consider EDI related issues in all aspects of study design and delivery (years 1-2)

M – Creation of checklist

A – Learning from community engagement events (see above) will help us design the checklist

R – The checklist will enable study teams to implement processes that help target recruitment across communities at the beginning of new studies

T – 31/08/2024

O – CRF Co-Directors and CRF Operational Manager

S – Implement both the targeted recruitment strategies and checklist, and steps to overcome barriers to recruitment at AHCRF (years 3-5).

M – Updated study set-up processes

A – The strategies and checklist will be used at new research study review meetings (ARRC/SOC) and their impact performance monitored at CRF Operational Group meetings

R – Ensures that community engagement learning is built into study set-up processes

T – 31/08/2027

O – CRF Co-Directors and CRF Operational Manager

S – Undertake a critical review the impact of changes made to address inequalities in patient participation (years 4-5).

M – Increased participation in research from targeted communities

A – We will review our research portfolio and recruitment demographics

R – The data will help determine whether we are now proportionately recruiting from different sections of the community

T – 31/08/2027

O – CRF Co-Directors and CRF Operational Manager

Current maturity rating: ‘Discovery’.

Study information

Children and families should receive appropriate study information for age, language spoken, child’s development, and parental educational attainment, to maximise the population who can be approached and facilitate truly informed consent. We commit to drive improvement in this area.

Alignment to strategic objectives: NIHR: 2,4 – AHCRF: B,C

SMART objectives:

S – Evaluate the current information provided to children and families about research studies, and share with the AHCRF PPIE team (years 1-2).

M – Publication(s) about patient and/or parent information in the literature

A – Audit registration required, and student projects to be designed

R – Unless appropriate data is collected, we will not know how good/bad the current information sheets are

T – 31/08/2024

O – CRF Director/Co-Director

S – Work to identify the best ways to deliver information to underserved communities (years 2-3).

M – Discussion at community engagement events and PPIE group meetings

A – Discussion at new study review group (ARRC/SOC) meetings

R – Understanding the best ways to deliver information to underserved communities will hopefully improve their engagement with research

T – 31/08/2025

O – PPIE Team, Physician Associate

S – Explore how best to present information about studies to families where English proficiency may be a barrier* to current research recruitment strategies (years 2-3). * e.g. video interpreters

M – Discussion at community engagement events and PPIE group meetings

A – Discussion at new study review group (ARRC/SOC) meetings

R – Understanding the best ways to present information to non-English speaking families will hopefully improve their engagement with research

T – 31/08/2025

O – PPIE Team, Physician Associate

Current maturity rating: ‘Compliance’.

Education and training

We need to ensure the staff delivering research are representative of the community and understand the importance of EDI. Our goal here is to improve the knowledge of EDI within current research team members, and knowledge of research (including EDI) across the Trust and beyond. This combination of education and training will help improve research literacy, reduce exclusion and increase participation.

Alignment to strategic objectives: NIHR: 3,5 – AHCRF: A

SMART objectives:

S – Include EDI training in National Teaching webinars (years 1-2).

M – At least one of the national teaching webinars will focus specifically on EDI in research, with elements of EDI where appropriate in other sessions

A – Organisers will ensure EDI is included

R – Training will improve knowledge of EDI at AHCRF and beyond

T – 31/08/2024

O – CRF Director and CRF Operational Manager

S – Work with and get feedback from trust networks (e.g. BAME, LGBTQ+) about research (years 1-2).

M – Feedback from Physician Associate at CRF Operational Group meetings

A – CRF will establish partnerships with the Trust’s networks

R – Learning from partnerships will help inform our education and training strategies

T – 31/08/2024

O – Physician Associate

S – Use evidence from children, young people, and families to develop training materials and deliver EDI training to CRF staff (years 1-5).

M – Staff successfully completing updated training programme

A – Updated staff training programme

R – Staff will understand the importance of EDI in clinical research

T – Ongoing

O – CRF Operational Manager and CRF Nurse Lead

Current maturity rating: ‘Discovery’.

NIHR AHCRF is aware of the need to base all our EDI practices on the most up to date evidence, and continually learn and improve. We will develop and share EDI related evidence, with particular focus on children, young people, and families and learn from regional and national NIHR and NHS partners.

Alignment to strategic objectives: NIHR: 2,4,5 – AHCRF: A,B,C,D

SMART objectives:

S – Review how recruitment to research studies has changed following delivery of other themes (years 3-5).

M – Compare our current EDI activities to the new EDI activities we will develop

A – Review of process changes

R – Share learning with other CRFs on which of our EDI activities have had positive

T – 31/08/27

O – CRF Director, CRF Operational Manager

S – Work with other regional CRFs, and paediatric CRFs nationally, to establish other EDI work that has had a positive and negative impact (Years 3-5)

M – EDI established as regular topic of discussion at local and national collaborative forums

A – Collaboration through Northwest CRF Alliance and Paediatric Excellence Initiative (for example)

R – This allows CRFs to learn from other CRFs, and enhance each of our EDI strategies

T – 31/08/27

O – CRF Director, CRF Operational Manager

S – Share AHCRF best practice across the NIHR and beyond through presentations at national and international conferences (years 2-5).

M – CRF Operational Group and Senior Management Team review of EDI presentations

A – The CRF Senior Management Team will write/encourage EDI related presentations at conferences

R – Sharing best practice across the NIHR provides opportunities for other CRFs to improve their EDI strategies

T – Ongoing from 01/09/23

O – CRF Co-Directors, CRF Operational Manager, PPIE Team, Physician Associate

S – With children, young people and families, set new targets for EDI for the next life cycle of AHCRF (years 4-5).

M – Consider impact of our EDI strategy and determine our EDI objectives for the next life cycle of AHCRF

A – Discuss at relevant groups and forums

R – Continually improve EDI beyond this current cycle of the AHCRF

T – 31/08/27

O – CRF Co-Directors

Current maturity rating: ‘Compliance’.

Live EDI SMART Action Tracker

We believe in transparency and have therefore created a tracker, to show how we are progressing towards our EDI objectives. The tracker document below is updated regularly, but if you do have any questions about our EDI strategy, please email [email protected].

Live EDI SMART Action Tracker (133kB pdf)