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CRN East Midlands Annual Highlights 2021/22

Contents

Introduction

In partnership with many stakeholders across the East Midlands, the National Institute for Health and Care Research (NIHR) Clinical Research Network (CRN) East Midlands has made a strong contribution to the country's research and evidence base, in relation to both Covid-19 related research and in beginning an effective recovery of wider research endeavours.

Reflecting on performance, 100% of NHS Trusts in the region recruited to CRN portfolio studies, along with 49% of General Practices (against a national target of 45%). Additionally, we have seen good engagement from an increasingly wider group of organisations. Some conversations are still in their infancy, however in many cases this has translated into research activity, with recruitment seen in 30 care homes, along with a number of schools, hospices, prisons and within home care services delivered in people's homes. This demonstrates good progress within our three-year Transformation program, as we move into the second year, to further expand this work. As Integrated Care Systems (ICS) have begun to be established this year, we have engaged with all five of these shadow organisations in the East Midlands, and see this as a real opportunity to influence system thinking and ensure research can be used to good effect to improve identified health and care needs.

During the course of the year, as cases of Covid-19, restrictions and working practices changed, we have been proud to begin hosting a number of in-person events. Most notable have been our Research Awards event in November 2021, and Research Forum in March 2022. The Research Awards celebrated and recognised the dedication and outstanding achievements of so many individuals and teams over the preceding 18 months, along with providing a reflective patient insight into the important work of researchers across the region. The Forum was a great opportunity for research delivery teams to get together, share learning and experiences and to really begin to re-establish the sense of community amongst the workforce, who have been so impacted over the past two years. The research workforce play an essential role, and in 2021/22 we have taken many opportunities to develop, support and reward this community.

Delivery for the Life Sciences industry remains a strength which we continue to build on. In 2021/22 the CRN commenced a regional pilot to increase commercial research delivery across mental health and community trusts, where there are often challenges to identify suitable portfolio commercial studies for these services. As a result of this work, which had exceptional engagement from sector partners, we were able to open and deliver commercial studies in two additional organisations. Although the objective relating to the proportion of NHS Trusts recruiting into commercial contract studies fell just short of the 70% ambition (achieving 69%), this represents an improvement on last year's out-turn of 56%, with the region now in a stronger position to achieve further success in future years.

Research Delivery

Contribution to Covid-19 response

Particularly during the first half of 2021/22, the Network, with partners, remained focussed on responding to the many aspects of the Covid-19 pandemic. This included innovative approaches to research delivery, responding to workforce pressures and supporting staff. In relation to research delivery, highlights include:

  • RECOVERY (CPMS no: 45388) - 478 recruits, with the study open and recruiting at all eight acute trusts in the region; we are keen to draw attention to the University Hospitals of Leicester NHS Trust (UHL), who continued with their stellar contribution to this study and remained top of the league table for recruitment nationally.

  • PHOSP COVID (46443) - This important long covid study, which is led from the East Midlands, had involvement from seven of our acute trusts last year with recruitment of 990 participants in the region. The study also linked in with our Study Support Service team to identify suitable sites nationwide ensuring continued activity to help answer important questions on long covid.
  • UK REACH (47157) - Another locally led study, with a specific focus on ethnic minority populations; this is the only study to calculate the risk of contracting and dying from Covid-19 for ethnic minority healthcare workers. The CRN has supported this important study, which will help to build a comprehensive picture of the impact of Covid on the physical and mental well being of ethnic minority healthcare workers.
  • PANORAMIC (51313) - 298 recruits from five sites. Of particular note were our swift set up times and excellent examples of partnership working across all settings, such as Chesterfield Royal Hospital NHS Foundation Trust and Brierley Park Medical Centre, along with exceptional delivery at Danes Camp Medical Practice in Northamptonshire, who were nationally recognised as a top ten recruiting site. To support site based teams, the Network Direct Delivery Team (DDT) were also able to flex to support as required. Additionally, a number of CRN East Midlands staff provided virtual cover and support to the centralised study team based in Oxford to recruit for this study.

In relation to Covid-19 vaccine studies, sites continued to follow-up all previously enrolled participants, as required, along with very efficient recruitment into Com-COV stage 2 (51100), a study to consider different combinations of approved Covid-19 vaccines, at the University of Nottingham Health Service (Cripps Health Centre), recruiting 104 participants and at UHL, within the NIHR Patient Recruitment Centre (PRC), recruiting 100 participants into the MODERNA booster study P305 (51566).

Contribution to UK Life Sciences

Much of the first six months of 2021/22 were focussed on continued delivery excellence across the Urgent Public Health studies, and in relation to the commercial portfolio this included a number of vaccines studies, as above.

As the Managed Recovery work commenced, the CRN reviewed the locally-led studies in the initial study selection, provided a detailed summary on progress and how further progress might be facilitated. To support Managed Recovery, and wider commercial portfolio restoration, we utilised local knowledge and experience, through the role of Performance Review Lead (PRL) for commercial studies.

CRN East Midlands has also been an active contributor to the CRN Coordinating Centre’s Commercial Performance Review Lead Allocation Role project and were one of two LCRN who stepped up to take on the Performance Review Lead role for all East Midlands-led commercial contract studies during Q3 2021/22. This has enabled more focussed and tailored engagement with industry sponsors and Contract Research Organisations (CROs) over the past few months, resulting in stronger working relationships.

Throughout 2021/22 our outgoing Industry Operations Manager chaired the national monthly Industry Operations and Business Development (BD) joint meeting and supported the national team in setting the strategic direction for working in a more collaborative way. We also contributed to regular supraregional commercial meetings which have widened to the larger team and have included the national BD team to aid closer working relationships.

Many of our partner organisations are increasingly keen to re-engage with the Life Sciences sector, and we have confidence in excellent delivery across the East Midlands. We are continuing to develop effective relationships between Pharma/CROs and our partner trusts. One example of this forward-thinking approach is through a partnership in Northamptonshire between Kettering and Northampton General hospitals (two trusts). They are working together to deliver their academy strategy in collaboration with University Hospitals of Leicester NHS Trust, and have aligned their internal set-up and information processes including Edge. To begin the group working, these two trusts have employed a small team of five to work across both trusts, with a focus on delivering commercial research, which we are very keen to further foster and support.

Recovering our wider research portfolio

As the year progressed and services were gradually re-established, the Network has worked closely with partners to ensure studies can be opened alongside these services, or indeed revised/adapted as patient pathways have changed. At the end of 2021/22, there are some areas of our work where research is still heavily impacted, as a number of services remain challenged. This is seen in some aspects of our respiratory and surgery portfolios and we will continue working with organisations to support and adapt our approach.

Through focussed funding, it has been possible to target investment to help recover the portfolio, including across Lincolnshire, through funding for roles within United Lincoln Hospitals NHS Trust to support growth in Cardiology, and more generally across research delivery as the recovery from Covid-19 focussed work began. Also in Lincolnshire, success has been achieved by Lincolnshire Partnership NHS Foundation Trust through delivery of the PAMI-UK (48946) trial which gave care home residents with dementia, the opportunity to receive Person Attuned Musical Interactions (PAMI) music therapy.

One example of this is through joint investment in a Mobile Research Unit based initially at Nottingham University Hospitals NHS Trust, although with the intention to work across a wider regional footprint. The aspiration is to bring research to appropriate participants and make it more accessible to a wider audience. It can also be used to facilitate wider engagement from the public regarding getting involved in research.

Workforce and Wellbeing

Our expert workforce is the most critical asset for the CRN. During the past year it has become increasingly evident that the pandemic has had a significant impact across the workforce. Many members of staff have demonstrated immense agility through working in different roles, delivering above and beyond and dedicating themselves to caring for patients and each other, often working with very few breaks or downtime. Additionally, the levels of Covid-19 amongst the workforce, along with the requirement to self isolate has also impacted upon workforce capacity and often team morale; at some points during the year c.35-40% of research teams were unavailable for work. As a result of these past two years, there has also been an increase in those taking early retirement, or leaving roles across health and care, including research related roles.

In response to this, our region has begun to take steps to better understand and address the wellbeing and development needs of the workforce, along with opportunities to attract, retain and develop a pipeline of expert research delivery staff.

Workforce Development

The CRN Learning & Development Team has embraced new ways of working and remote delivery, which has been essential to mirror the different approach to research delivery. It has been really rewarding to reach a point where virtual delivery is as productive and sometimes more effective than face to face learning experiences.

After a two year gap due to Covid-19, the CRN delivered our Research Forum Event: Best Research, Best Health, New Horizons in March 2022, with 140 attendees. It was really great for people to physically get together, with a real buzz in the room - it felt like two years worth of networking happening within one day!

The speakers were all well received, with positive feedback to see the journey from the impact of Covid-19, through to how Clinical Research Practitioners are evolving, along with developments in Northamptonshire and the Transformation work as we move towards new collaborations outside of the NHS.

  • Clinical Research Practitioners (CRPs): we continued our groundbreaking work with CRPs and still lead the way with the numbers on the register and directory. We had regular sessions with our CRP Champions and held a regional virtual CRP Celebration Event using Airmeet that had an attendance of 84. The event included inspirational speeches from registered and established CRPs as well as breakout sessions with some energetic discussions to consider CRP training and development needs.
  • Another initiative to stimulate interest and develop research careers has been the development and appointment of a new Workforce Facilitator post to focus on those new to research, including the Associate PI Scheme and planning a Research Scholars Scheme for the region.
  • Additionally, in Q4 we have commenced some mapping of the Advanced Clinical Practitioner Workforce across the region to get a baseline of the current engagement with research delivery and the potential for further development.
  • Reflecting on our website and e-learning, the following progress has been achieved in 2021/22:
    • 22,331 page views of the Workforce Development website
    • Developed and released Safety Reporting E-Learning in November 2021 with 212 users completing this in-year
    • Developed and released a new module through NIHR LEARN: Increasing Participation of Ethnic Minorities in Health and Social Care Research
    • Developed Edge Training Videos across the supra region, launched in April 2021 with 3,315 views in-year
    • Refreshed our online induction package
    • CREATE: Supraregional development of innovative flipped classroom approach to be delivered virtually and launch of the first cohorts across the regions. Running over 12 weeks, this online and live interactive learning package is primarily for those who have completed Good Clinical Practice (GCP), and worked in research delivery for less than 12 months. This has received excellent feedback to date

Wellbeing

  • Within the CRN Central team, the previously established Wellbeing Working Group has continued to meet in 2021/22 to review what support can be made available to meet the needs of the team. During Q2, the group held a face to face planning meeting, reviewing the action plan from the wellbeing survey and refreshing the wellbeing themes.

  • In September 2021, a second wellbeing survey was undertaken which demonstrated an upward trend in the overall mental health and wellbeing score within the central team since the previous survey in 2020. In December 2020 the mean score was 7.32, which rose in 2021 to 7.55.

  • Feedback from the survey also showed that the wellbeing offering to the team was valued and the team felt supported.
  • To help team members with a sense of identity and to keep us warm as we returned to office based working in early 2022 we also offered the team NIHR CRN East Midlands branded hoodies, which proved to be very popular.

Participant and Public Involvement and Engagement (PPIE)

When undertaking research, with and for patients and the public, it is important that their views on the experience of participating and being involved in research are captured, and then used to inform future practice.

One way this is done is through the delivery of the Participant in Research Experience Survey (PRES), which is undertaken with partners across the region. Over the course of the year, we received 1,457 responses across 19 organisations and 115 studies. This is a significant increase in the number of participating organisations and studies from the previous year, and reflects that PRES is returning to business as usual.

  • 93% of respondents agreed or strongly agreed that the researchers valued their taking part in the research
  • 98% of respondents agreed or strongly agreed that research staff always treated them with courtesy and respect
  • 95% of respondents agreed or strongly agreed that they would consider taking part in research again

The PRES also provides two freetext questions to enable participants to expand on their answers. Many participants used these questions to praise their interactions with research staff, highlighting the professionalism and friendliness they encountered when taking part in research. Participants also used the PRES to ask for improved communications about research results, and to highlight the need for greater information about how to contact research teams.

Alongside the delivery of PRES, we conducted a pilot with Nottingham University Hospitals NUH Trust to explore whether generating custom QR codes and URLs for site and study combinations can make PRES easier for staff and participants. This pilot was a success, and has been rolled out across the region for 2022/23.

We supported the delivery of the CRN East Midlands Research Awards, which celebrated excellence across the region during 2020 and 2021. This included creating a series of videos to be shared at the event, which were also used on social media and across other platforms to raise the profile of research within our region.

Of particular note was a video of Alex, who took part in the RECOVERY trial after being hospitalised with Covid-19, and used his platform to thank the research community for their impact on his life.

We worked with partners to develop a series of events to give an overview of different PPIE projects and approaches across the region. The aim of these was to inspire and encourage partners to explore local PPIE activity. Sessions included:

  • Using social media to conduct PPIE activity
  • Embedding a programme of research volunteers
  • Developing community researchers

These events were attended by our partners, with our Research Champions also attending to provide a participant perspective.

Transformation, Expansion and Digital

In response to the national direction and funding, the CRN East Midlands established a three year Transformation program which seeks to better understand and support research delivery for health and social care research across a broader landscape. To lead this work two experienced Transformation Leads were appointed. The Leads are supported by a Task and Finish (T&F) group with broad membership and representation, with four work-streams now established, to cut across many aspects of the work we do. In addition to the structured Transformation Program, significant progress has been made in extending the reach of the CRN, outside of traditional (predominantly) NHS research delivery.

Workforce, including the Direct Delivery Team (DDT)

To support all types of research delivery in a range of environments, an appropriately experienced and skilled workforce is required; we have therefore successfully established a dynamic and agile Direct Delivery Team, following a process to bring together and strengthen two of our existing delivery teams - the Research Support Team and Primary Care Research Delivery Team.

A county-based footprint has been used for these sub-teams, with Regional Leads appointed for each county, each of whom bring with them a wealth of knowledge and expertise. The Leads have started to build their teams ensuring the right skill mix and experience to deliver our ambitious Transformation agenda.

All DDT county teams were able to support UPH studies, the restart program and work on both commercial and non-commercial studies across multiple sectors, which included primary care, hospices, acute care, mental health and community. A summary of DDT highlights is provided below:

  • Supported vaccine trials and PANORAMIC in General Practice
  • Through supporting study delivery at one of our partner trusts, the outcome has been to inform public health strategies with timely data management and ensure the safety of existing trial participants during the pandemic

The DDT has:

  • Built relationships with all trusts, this includes a new collaboration with Nottinghamshire Healthcare NHS Foundation Trust, to begin supporting research delivery in non-NHS environments
  • Supported with vaccine study delivery within the NIHR Patient Recruitment Centre (PRC): Leicester
  • Significant support for the Leicester-led P-HOSP (46442) study, over ⅓ of study participants recruited for Tier 2 of the study were due to placement of DDT
  • DDT led on PROTECT V Renal (47409) study in Leicester (lead). This study would not have opened and delivered without DDT support
  • Delivered studies at Ashgate Hospice

We have also appointed a supra-network Training Manager to support the Transformation program and DDT. A scoping exercise for research delivery resources to support delivery outside of NHS settings was conducted and the findings shared across all LCRNs.

Establishing and expanding partnerships

Ahead of the Integrated Care Systems commencement on July 1st 2022, the CRN has made connections with research sub-committees in each of the five ICS regions within its geography through a Senior Team Link.

Through this collaborative work the CRN has supported activities such as the development of Population Health Innovation sub-committee strategic goals and objectives in the Northamptonshire ICS, supported the design and delivery of an exercise to map research infrastructure across Nottinghamshire and contributed to the national Integrated Care and System Engagement project. Learning opportunities have also been provided to the wider CRN Central team to increase understanding of the transition to ICSs.

Significant engagement work and investment has also taken place across primary and community care, which dovetails with the Transformation Program. The growth within primary care is also included here, as expansion work, which has been stimulated by the National Primary Care strategy.

Primary Care

  • Many GPs were still struggling with Covid-19 and changes to practice delivery models, however other practices have flourished as studies were still flowing through. Others over-achieved on their Key Performance Indicators and were able to apply for higher levels of funding via the Research Site Initiative (RSI) scheme for 2022/23.

  • We undertook a Primary Care Network (PCN) Pilot - investment across five sites, for a six month pilot. This pilot was evaluated with outcomes that sites who want to engage with research prefer to work with an existing RSI site for monitoring, this finding has led us to change our 2022/23 RSI Scheme, with the introduction of a Leadership element, which supports the mentoring of research naive sites.

  • We introduced Targeted Funding for the first time in primary care, with dedicated funding, an evaluation report will be reviewed shortly by the Partnership group. Total allocation £51,753 (Bids £98,706). 11 bids out of 17 were funded.

Primary Care Dental Pilot

  • Primary Care Dental Pilot commenced 1 October 2021, completed June 2022.
  • The pilot covers 10 community dental practices and one private practice across Derbyshire, with a payment to each practice of £4,500. There is an expectation for every practice to identify a research lead in their practice, complete Good Clinical Practice training, attend two meetings with the rest of the cohort, engage with the Expressions of Interest website and support the recruitment of at least one portfolio study.
  • Two x Community Dental Champions have been appointed to oversee this scheme.
  • A full written evaluation is expected in September 2022.

Community Pharmacy

Our Community Pharmacy Lead is developing a pharmacy strategy, the main objectives will focus on:

  • Establishing the views of pharmacists and pharmacy teams in community and primary care settings
  • Enhancing engagement in uptake of NIHR Portfolio studies by community pharmacy and GP practice pharmacists
  • Providing pharmacy research support to PIs and future research teams/collaborators at the development stage of studies

Social Care

We have invested in several posts through a collaboration with the University of Lincoln, which is helping us to learn more about social care and social care research opportunities, and develop some excellent connections and future plans.

This includes the development of RELEC - A research and learning excellence community within the home care setting in Lincoln. CRN East Midlands, together with CRN Greater Manchester developed a proposal to establish an equivalent of ENRICH for home care. Following consultation this document has been submitted to Professor Geraldine MacDonald, NIHR National Social Care Lead.

Another element to the social care work with Lincoln University has been in undertaking a pilot project looking at the barriers to quality in community social care in Lincolnshire. An interim report of findings was presented in January 2022, with the second phase of this project continuing into 2022/23

We also jointly held a very successful and well attended social care research event for more than 80 people in March 2022, which evaluated extremely well.

Public Health

In addition to the DHSC funding for Public Health, we have added to this investment locally, to extend the work. Alongside our Specialty Lead and Specialty Manager for Public Health research we have two key appointments in Jo Morling, CRN East Midlands Embedded Public Health Research Consultant appointed in November 2021 and Sam Cooke, Research Associate.

Jo has begun a process of engaging with local authorities within the region and Sam has been working on a prevalence dataset, supporting bids, developing a strategy and supporting Jo. Together, and with colleagues they have also created a public health research website.

ENRICH (Enabling Research in Care Homes)

Following 2020/21 when, understandably, research had not been the primary focus for care homes, we reviewed our ENRICH activity and started regional wide meetings. Through the previously outlined investment in social care research at the University of Lincoln we were able to identify an ENRICH Lead and Coordinator.

We have also begun to establish a number of ENRICH links across the region and have future plans to use the Expressions of Interest website to promote care home research, and recording care home activity on EDGE (our Local Portfolio Management System).

Nottingham CityCare

Nottingham CityCare is a social enterprise delivering a range of community health services.

  • For a number of years we have been building this relationship, and in 2021/22 we provided some further investment which has resulted in the development of a formal research strategy which aligns with their Care strategy
  • We have worked in partnership and supported the development of their own instance of Edge (our Local Portfolio Management System), to increase their knowledge and system visibility
  • CityCare are also a great advocate for Care Homes, and engaged with our ENRICH approach
  • Recent investment also in a CRP post (commencement April 2022, delayed due to pandemic), which will be reported in a later year

Hospices

Through an established relationship with LOROS, a hospice caring for people across Leicestershire and Rutland, we supported the appointment of a new Research Manager to support research delivery growth both at LOROS and at research naive hospices. Two new non-NHS hospices, St Barnabas Hospice, Lincoln and Nottinghamshire Hospice have opened and enrolled participants into CRN portfolio studies in the year, in addition to Ashgate Hospicecare and LOROS.

Digital

In the East Midlands we have always been keen to consider a wide range of approaches to improve research delivery. With many changes being observed in the way we work, live and conduct research linked to digital innovation, it is essential we consider this in all of the work we do. It is also important to refer to the principles of Continuous Improvement in the way we approach our work, looking for efficiencies within usual business process.

Digital is an important element of the Transformation program, as we work in new areas, so that we can have the blank canvas to consider working differently. The digital work-stream of the program started by establishing a small project team consisting of delivery staff from across specialties and settings.

Through discussion and planning the group developed the Research Ideas & Digital Innovation App (RIDI), which enables delivery staff to view, vote and submit ideas on using data and digital to improve research delivery.

The app was launched at the CRN East Midlands Research Forum in March 2022. Following the launch, the project group has selected a first idea to be developed into a project to be delivered in 2022/23.

CRN EM Digital Services: The East Midlands Information team has been a core component of digital innovation and performance; through extensive collaboration with the wider CRN team they have worked hard to promote and adopt the latest digital tools, enabling better visibility of data to draw insight and improve performance. We have seen a number of firsts this past year:

  • Working with the Study Support Service and AppSheet as our study/site performance local data capture solution, moving away from traditional spreadsheets, which has improved the data quality, increased the ease of use and reliability of service
  • With Expressions of Interest, for the first time we are able to offer a comprehensive service encompassing all aspects of the EOI process via a dedicated website
  • Collaborating with Primary Care, Service Support Cost requests are now easily monitored and visualised in Data Studio. We can now automatically track spend against budget, saving time and effort
  • The team has provided daily visibility of our local performance indicators through our live Performance Standards Dashboard

All of these services are made available using our Digital Services Portal, new for 2021/22, which offers a one stop solution to access all services from one place.

Digital Community of Practice

In addition to local work, it is important that digital approaches can also be shared, and often they can evolve through joint working.

One example of this is the development of the Buddy App. Through an effective supra-network Continuous Improvement (CI) project, we have developed an effective way to stay connected with colleagues.

Many LCRN teams have been remote working, and this app has supported us from both a work and wellbeing perspective.

The app enables colleagues across our supra-network core teams to connect based on shared professional or personal interests.

A further contribution to more joined up working has been through supporting the Digital Community of Practice which was formed following a desire to create a space for anyone involved or interested in the digital area.

It is an NIHR wide group, supported by the Digital, Data and Technology (DDaT) Office and meets on a monthly basis to discuss, demonstrate, and share information and knowledge about the many and varied Digital tools and services on offer.

The group was founded by the CRN East Midlands Business Information & Support Analyst, along with national colleagues.

Since forming, the Digital Community of Practice has covered such topics as machine learning and AI, chatbots, Big Query, agile project management and digital culture.

Prioritising research for under-served communities and the importance of Equality, Diversity and Inclusion in research

Equality, Diversity and Inclusion (EDI) are essential to ensuring our research is best serving our population. It is difficult to feature this in only one section of this report, as in fact EDI runs through all the work we are undertaking, from striving towards a diverse research workforce, seeking to include participant views across our wider population, to embracing diversity in new research approaches and settings.

This section covers some specific EDI initiatives, as well as reporting on work in 2021/22 which has helped to focus research across some of the communities in the East Midlands under-served by research. We have more to do here, with initiatives already underway for 2022/23.

Equality, Diversity and Inclusion in research

Ethnic minority groups make up about 13% of the population of the United Kingdom and are forecast to increase significantly in the coming decades.

Also, they are more likely to suffer from poorer health outcomes and health and social care inequalities in general.

However, they are much less likely to be represented in health and social care research studies.

Through joint working with the Centre for Ethnic Health Research, in Leicester, we have developed and launched a new module on NIHR LEARN: Increasing Participation Of Ethnic Minorities In Health And Social Care Research.

This resource and accompanying toolkit aims to capture best practice and provide researchers with a framework on how to improve the participation of ethnic minority groups in research. Over the course of the year this module has been accessed by over 800 learners.

During 2020/21, when it became evident that the impact and prevalence of Covid-19 was different across different ethnic groups, CRN East Midlands brought together initially a small group, which subsequently grew in size, to reflect upon this and consider how research might help us to better understand this.

This has evolved further in 2021/22 and the CRN Advisory Group for Research Inclusivity and Participation at Study Sites (CRN GRIPS), chaired by Professor David Rowbotham was established. The group brings together leaders from across the Local Clinical Research Networks and CRN Coordinating Centre to make a significant and sustained contribution to realising the vision of the NIHR Clinical Research Network.

Supporting communities under-served by research

Improving research participant access and wide awareness across all age groups is essential and one reason the CRN continues to provide part time investment for a Teenage and Young Adult (TYA) Project Manager role. Through this role, and wider team support, we have created an East Midlands TYA digital platform tool which is used each week in the East Midlands TYA Multi Disciplinary Team meeting, through regular use and good feedback this has helped identify suitable trials. For the first time we can demonstrate the capture of TYA data, in 2021/22 we know:

  • 130 patients registered to TYA service

  • 26.9% recruited onto trials

  • 21.5% declined or not eligible

  • 51.6% no trials available

This knowledge helps us to establish a baseline, to then work towards the target for all centres, designated to treating TYA patients, to recruit 50% of those patients to clinical trials by 2025. It also assists with future objectives to strengthen the portfolio of studies offered to TYA, promote and encourage TYA tumour banking and ensure patient involvement and experience is at the heart of our research.

In 2021/22 CRN East Midlands also funded a number of strategic bids which support communities under-served by research. Currently these are completing a formal evaluation of impact, and some span more than one financial year. Funded projects cross a range of partner organisations, settings and specialties.

Examples include a project to better understand the communication and cultural needs of care home residents whose first language is not English to inform future research and practice in Nottinghamshire; a project at Leicestershire Partnership NHS Trust to improve access to research participation for people with intellectual disabilities; a project delivered by NIHR: Leicester Biomedical Research Centre to improve engagement with under-served communities in order to increase inclusion and diversity within the design and delivery of research and a project in Derbyshire Healthcare NHS Foundation Trust to improve inclusion of under-served groups in clinical research by understanding and reducing barriers to mental health research participation.

Further examples include work delivered by the Leicester Diabetes Centre which focussed on increasing access to research through community engagement and work delivered by the University Hospitals of Derby and Burton NHS Foundation Trust which increased equity of access to research across their region through the establishment of a ‘hub and spoke’ model focussed on renal research.

A project that was funded later in the year will develop a toolkit for increasing research participation of rural residents in health and social care research and will be delivered in collaboration between the University of Lincoln and the Centre for Ethnic Health Research. An evaluation report of the strategic bids will be available in due course, when impacts of these investments will be shared widely.