CRN Kent, Surrey and Sussex Annual Report 2022/23

Foreward

Dr Jo Zamani, Chief Operating Officer

Clinical Research Network Kent, Surrey and Sussex (CRN KSS) had another successful year in 2022/23.

We worked with sponsors to ensure they were able to refresh, rebalance and update their portfolios. Existing communication channels and strong partner relationships enabled sustained visibility of and engagement with the Reset programme.

Our agile workforce through our own Research Delivery Team has grown, both in the number of team members and in the number of studies being supported in new wider health and care settings such as care homes and schools.

In a continued effort to strengthen performance and make our region attractive to sponsors, CRN KSS created a new clinical industry leadership role. Dr Riyaz Kaba has led initiatives to increase and improve the delivery of commercial research across the region. Successful engagement with NHS partners and speciality leaders have resulted in stronger collaboration and commitment to grow the commercial portfolio.

With NIHR partners in Kent, Surrey and Sussex and AHSN KSS (now Health Innovation Network KSS), working as ‘One NIHR’ , we have continued to strengthen a system-wide approach to working with the Integrated Care Boards. This resulted in our contributing to integrated care strategies and Joint Forward Plans.

The PPIE Space to Lead initiative and the under-served programme contributed to the growth in the number of public Research Champions, as well as supporting the development of future PPIE leaders.

This report is a celebration of all that we have achieved with our stakeholders and partners ensuring research reaches communities and settings across Kent, Surrey and Sussex.

Our Mission Statement

We provide opportunities to develop and participate in quality research to improve the health and care for everyone in Kent, Surrey and Sussex.

Our Vision Statement

We will inspire our people and partners to come with us on the journey towards a better
and a brighter future for health and care research.

Our Values

Transparency: We are approachable, honest and communicate thoughtfully

Compassion: We have a caring and inclusive approach

Empowerment: We provide clarity and trust each other

Flexibility: We value diversity and adaptability

Collaboration: We seek opportunities to work together, be heard and are open to ideas

Wellbeing: We are supportive, patient, respectful and self aware

2022/23 in numbers

Public support and involvement is vital to our work shaping the future of health and social care. It is only through the support and commitment of our participants, that we are able to drive through improvements to healthcare services in the UK.

The fact that so many people joined our research projects in wider health and care settings is testament, not only to the hard work of our team, but also to the commitment of the general public to improving health and care today, and for generations to come.

42,161 participants took part in 568 health and social care studies. That’s the equivalent of 115 participants per day
100% of NHS Trusts recruited participants into NIHR CRN portfolio studies
67% of NHS Trusts recruited participants into NIHR CRN Commercial portfolio studies
98% of closed Lead CRN KSS studies achieved Recruitment to Time and Target
525 portfolio studies took place within the NHS (88%)
34,616 participants took part in studies across the NHS (82%)

Wider health and social care settings

4,213 participants took part in studies in wider health and care settings (10%)
31% of GP practices recruited participants
38 studies took place in in GP practices (6%) and
35 studies took place in non-NHS settings (6%)
3,332 participants took part in studies within GP practices (8%)

Commercial research

38 studies took place in in GP practices (6%) and
35 studies took place in non-NHS settings (6%)
82% of closed Commercial studies achieved Recruitment to Time and Target

Patient and Public Involvement and Engagement (PPIE)

Participant Research Experience Survey

The region continues to give people who take part in research an opportunity to provide feedback on their experience through the Participant Research Experience Survey (PRES). 2,400 participants completed the PRES, with all NHS partners delivering the survey. This year, CRN KSS extended the PRES to primary care and wider health and care settings.

93% agreed that the information received before taking part prepared them for their experience (increase from 90%)
82% agreed that they have been kept updated about the research (increase from 67%)
65% agreed that they know how they will receive the results of the study (decrease from 74% in 21/22 and 80% 20/21)
84% agreed that they know how to contact someone (decrease from 87%)
97% agreed that they felt valued by the research team (increase from 91%)
98% agreed that research staff treated them with courtesy and respect (increase from 97%)
97% agreed that they would take part in research again (increase from 91%)

These results tell us that general satisfaction is high among participants, but that increased efforts need to be made in ensuring that they are kept updated on the research after their participation is complete. This is reflective of the national picture.

Creating PPIE leadership - Space to Lead Programme

CRN KSS launched a ‘Space to Lead in PPIE’ pilot at the end of 2021/2022, to develop PPIE leadership skills and raise the profile of research PPIE within NHS partners. 25% of partner organisations applied for CRN KSS funding to release staff time to participate in the programme.

Building on the success of the pilot, ‘Space to Lead’ was formally launched in 2022/23. The emphasis of the programme is on creating ‘inclusive opportunities’ (one of the UK Standards for Public Involvement), as part of CRN KSS’s wider under-served programme. PPIE Leads were supported individually and collectively to implement activities that would enhance access to health and care research for under-served communities. This provided an opportunity for PPIE Leads to further develop their engagement and leadership skills.

Over half (55%) of Partners have Research PPIE Leads who participate in the Space to Lead programme, with 70% of all NHS partners actively contributing within the PPIE CRN forum. This programme is driving significant changes within the culture of partner organisations, through development of inclusive and system approaches to engagement and involvement, and inspiring members of Research and Development teams in other organisations to turn their attention to leadership for PPIE.

As the PPIE leadership grows, the aim is for a more diverse Public Research Champion community and better representation of under-served populations in health and care research recruitment.

Quotes from people on the Space to Lead programme:

my confidence has increased in terms of presenting to and engaging with colleagues, including senior colleagues. The support of the CRN and, in particular, the Space to Lead programme really helps to validate this work and keep it on the organisation’s radar.

PPIE has been embedded into our team, as I now dedicate a day a week to PPIE activity in setting up the group. We have also been making PPIE visible by presenting at team meetings, to community groups and creating a website page.

Building on the success to date, the plan is to support the development of Research PPIE leads in all partner organisations, and to expand the programme to include other system partners, such as local authorities.

Patient and Public Representatives to the Partnership Board

Carol Coleman and Dave Chuter are two of the Patient and Public Representatives to the CRN KSS Partnership Board. They reflect on their activities during 2022/23.

Carol Coleman: "I was privileged to sit on the under-served grant funding panel. I was impressed by the innovation of our research community, whether it be engaging groups with research via art projects, or actively recruiting someone from a specific community to be involved and participate in research.

The panel met regularly over the course of several months, hearing applications and offering advice on how to improve the applications. Being involved in the under-served work has given me a different perspective as I used to think research only took place in laboratories or clinics and this is anything but. It is amazing the way people think of different ways to address issues and improve services and treatments.

I also helped judge the Research Support Awards. Any acknowledgement, no matter how small, is always an incredible morale boost. It is great to recognise good practice and people’s hard work and dedication.

In my role as a Research Champion at Kent Community Health Foundation Trust, a project I am involved in is working with the Nepalese community. One person we met has subsequently become a lay research champion with our trust and is assisting another member of her community with a research project being undertaken by Edinburgh University."

Dave Chuter: "I have been a Patient and Public Representative to the CRN KSS Partnership Board for over a year and we are very much welcome at meetings. The other representatives and I have an important role to inform the board about how to work effectively with patients and members of the public and to also tell them about the vital work of public Research Champions across the region.

I sat on the CRN KSS Catalyst Funding programme panel and provided PPIE advice. My role is to help researchers understand what is going to work and importantly what will not work. We need to see that they have patients at the heart of everything they design and deliver. It is fascinating to see how researchers work and how they devise their ideas.

As well as being a member of the CRN KSS Partnership Board, I am a public Research Champion at University Hospitals Sussex NHS Foundation Trust.

During the year I helped review several different funding applications and lay summaries which came to our group. This included applications for NIHR doctoral fellowships and predoctoral fellowships which covered specialties such as respiratory and cancer."

Participant stories

CRN KSS is grateful to people who have participated in research who kindly share their experience with other members of the public.

When Harold had a fall and hurt his leg, he was treated by the community nursing team from Kent Community NHS Foundation Trust. The Trust's research team recruited Harold to the TICC (Transforming Integrated Care in the Community) evaluation study.

“I am very pleased to be able to help with research, because I can provide information that otherwise they would not have, and that will help make the services more effective in the future. I have benefited from research personally by receiving full health checks as I’ve grown older, and I hope other people will benefit from the information I have given in the future.”

Read Harold’s story on the CRN KSS website.

Carol from West Sussex has suffered with Psoriasis for most of her life. After almost 50 years of failed treatments, pain and discomfort, she joined the The Biomarkers and Stratification To Optimise outcomes in Psoriasis (BSTOP) study at University Hospitals Sussex NHS Foundation Trust and finally found a treatment that worked.

"It is nice to know that, while you are taking medication for a specific condition like mine, that I am being monitored for possible side-effects or adverse reactions. More importantly for me though, is the feeling that by contributing to research studies like BSTOP and BADBIR, people in the future won’t have to suffer the same painful and embarrassing experiences that I had when I was younger.”

Read Carol’s story on the CRN KSS website.

Increased engagement with under-served communities

This year CRN KSS started working with two voluntary organisations in Medway - Medway Voluntary Action and Medway Plus - to engage communities under-served within research to improve inclusion and representation in health and care research.

This work is part of the national CRN Research Ready Communities Programme which works in partnership with local voluntary and community sector organisations to train locally-based ‘Community Champions’. Community Champions then speak to their local communities to understand their levels of awareness and perceptions about research 'before planning and delivering activities that bring research to life in a way that appeals to their communities'.

Satinder Shokar is one of the ‘Community Champions’ for Medway Voluntary Action. He said: “Medway Voluntary Action saw great benefit in the Research Ready Communities project, as it extended the work we already do in addressing health inequalities. It provided a model to develop a project officer’s skills to be able to go out into the community to listen to the voices of those seldom-heard individuals who are integral to improvements in health research. Medway has a high level of health inequalities and many key programmes set up to address these within its population, and the Research Ready Community project could provide another vital tool to help with this.’’

Liam Dutton from Medway Plus said of the programme: “Medway Plus has always looked to help local disadvantaged communities, so when we were approached by NIHR we could see the benefit of Research Ready Communities programme. Many communities within Medway face barriers whether social, economic or geographical. We want our residents to have the tools to manage their care through research and education, and empower them to speak with confidence about health.”

Under-served funding

CRN KSS funded 13 outreach projects that have built connections with under-served ethnic and socio-economic groups to identify and overcome barriers to engagement in research. Many of these projects have established, for the first time, a meaningful and sustainable dialogue between these communities and researchers. Other projects have developed tools and resources to help researchers and clinicians better understand and interact with under-served groups.

Communications and engagement

Recognising commitment to research - Research Support Awards

CRN KSS continued to recognise health and care service staff’s commitment to research through the annual Research Support Awards. More nominations were received than in 2021/22 and for the first time colleagues in primary care and care homes were nominated and received awards. This demonstrates that research is no longer something that happens solely in hospitals, but involves the entire community.

Collaborating in communications - the Regional Research Communications Group

A system-wide regional research communications group involving NHS, medical schools, and NIHR partners was established at the beginning of 2023. While early in its development, the impact is evident in the number and diversity of partners contributing.

When asked what members of the group find valuable and useful about the group, one member said:

Learning from other organisations about what communication activities they undertake and learning of opportunities to collaborate

Research within primary care and wider health and care settings

Engaging primary care

31% of GP practices recruited participants across the year.
3,332 participants took part in 38 studies within GP practices

Improved primary care engagement has meant more GP practices expressing interest in research, including several previously inactive practices. To enhance capacity within Primary Care, a new approach was piloted, employing a locum research GP (CRN KSS is the first LCRN to do so), which has contributed to more flexible ways of working.

Growing a research culture within local authorities

Substantial progress towards growing a research culture within local authorities. This year, CRN KSS embedded researchers in five new local authorities, up from one in 2021/22.

Delivering research in wider health and care settings - the CRN KSS Research Delivery Team

The Research Delivery Team of 14 nurses, clinical research practitioners and allied health professionals, supported 16 projects across 45 sites and recruited 1,393 participants in wider health and care settings and primary care across Kent, Surrey and Sussex.

92.9% of participants were from wider health and care settings which would normally struggle to deliver research.
7.10% of participants were from secondary care sites which needed short term support for an agreed period of time. This service helped studies to achieve project recruitment targets and close for recruitment in a timely manner.

The team also supported engagement activities, attending medical fairs, career fairs, social care showcases, and NIHR specialty events. These activities have helped the team to generate interest and support for research in the region.

The team engaged a diverse range of sites which actively recruited including:Local Authorities, schools, hospices, charities, care homes, Fire and Rescue service, Sexual health clinics, Breast screening centres.

The team also established contact and relationships with more than 600 dental practices, 40 Learning Disabilities Centres and over 100 Homeless Centres.

Case Study: DACHA (Developing research resources And minimum data set for Care Homes’ Adoption)

The Research Delivery Team made a significant impact on the DACHA study. DACHA (Developing research resources And minimum data set for Care Homes’ Adoption) focused on establishing what data needs to be in place in order to support research, service development and uptake of innovation in care homes. The Research Delivery Team initially provided support for screening and recruitment of participants and has complemented this through engagement with new sites that were research naive or without recent research delivery experience.

Engagement activities and provision of tailored training packages resulted in an increase in research sites in the region with an increase in care home residents having access to research. Residents were given an opportunity to meet with a dedicated research team member, having time to discuss research participation in a familiar environment. With research activities being led by the CRN KSS team, time was released for busy care home staff, enabling them to explore research as part of their existing care role.

Having the Research Delivery Team on site enabled the study’s sponsor to focus on remote recruitment, with CRN KSS nurses, practitioners and AHP’s delivering the more complicated,in-person consent and research delivery activities.

With the dedicated input of the team, 15 care homes opened to recruitment and 286 residents were recruited in a six-week period.

Development of research culture and working practices within social care

CRN KSS has created a collaborative role within the Kent Research Partnership (KRP) to develop links between the CRN and social care researchers in Kent.

This has driven improvements in mutual learning, and strengthened working relationships between the CRN and the social care research community, improving processes and systems for supporting social care research. This is leading to sharing knowledge and recommendations that are relevant at a national level. While the current role is within the Kent social care setting, the learning and knowledge for the CRN is applicable across the region.

‘Introduction to the Clinical Research Network’ training sessions have been held for members of the School of Social Policy, Sociology and Social Research at the University of Kent. The sessions covered the type of support that can be offered to researchers either on existing projects or at the application stage.

This partnership has enhanced the understanding of the challenges and issues CRN KSS faces in offering support to research in social care and has allowed the network to tailor this support for the particular needs of social care researchers.

Thanks to this greater understanding of the intricacies of work in the social care setting the advice CRN KSS is now able to offer for study planning and set-up has been improved.

Supporting new spaces to foster collaboration - Neonatology Research Group

During the year, CRN KSS created several new spaces to foster collaboration. One of these was the Neonatology Research Group, which was set up in late 2020 by the CRN KSS neonatology specialty lead and the research delivery manager.

The Neonatology Research Group was established to increase access to and participation in specialist neonatology research in the region.

The Group consists of 73 research-interested neonatologists and nurses working in units and services from all trusts. As a result of this group, key neonatal studies have been rolled out widely across the region with increased recruitment and access to neonatal studies for the Kent, Surrey and Sussex population. A new clinician from a previously inactive unit reached out for support via this group and is now recruiting participants for two neonatology studies – the first neonatology research ever to be delivered at this trust.

A regional approach has been taken to study set-up and delivery, enabling less experienced sites and staff to open these studies. The neonatology specialty lead and membership of this group has been vital in providing mentorship and support to new Principal Investigators and sites.

Three more trusts in the region are now delivering neonatology studies, growing their research portfolios, and activity with a recent and exciting impact being that all 13 neonatology units (10 trusts) in the region have agreed to participate in the Cooling in Mild Encephalopathy (COMET) study.
COMET is an example of a study that has been offered to all sites in Kent, Surrey and Sussex taking this regional approach. The Chief Investigator attended the group bimonthly meeting and following that a face-to-face regional CRN KSS study meeting was held with agreement that Kent, Surrey and Sussex will be one of the leading operational delivery networks participating in the study. COMET is an important NIHR funded national multicentre Randomised Control Trial (RCT.)

Case study: HARMONIE study

A Phase IIIb randomized open-label study of nirsevimab (versus no intervention) in preventing hospitalizations due to respiratory syncytial virus in infants (HARMONIE)

The HARMONIE Study evaluated the efficacy of the drug nirsevimab in combating Respiratory Syncytial Virus (RSV).

RSV affects 90% of children before the age of two, and has seen a resurgence in numbers following the easing of COVID-19 public health measures.

Six CRN KSS sites successfully delivered HARMONIE with support from Neonatology Research Group. The group devised a Kent, Surrey and Sussex coordinated delivery option, a recruitment model with the intervention delivered in paediatrics and neonatology, and promotion supported by antenatal, postnatal and primary care services.

Samantha is a Sister on the neonatal unit at Medway NHS Foundation Trust and works alongside Dr Aung Soe, a Consultant Neonatologist who is Principal Investigator on the HARMONIE Study. “We became involved in the HARMONIE Study after Dr Soe told me about it. My daughter, who is at nursery, is coming home with all sorts of germs and my son Jack is catching bugs and illnesses from her, so I was keen for him to receive the antibody. I was pleased when Jack was randomised to receive the injection.”

Emily is a paediatric doctor and has treated babies with RSV. Emily enrolled her son into the study: “In the winter we see a lot of babies with RSV. Some babies are very sick and some are poorly but do not need to come to hospital. I know that if we can find a vaccine for RSV, the number of babies being hospitalised will be reduced. Callum was very little when he was born and I thought if there was a chance he could be protected from RSV, we might as well try.”

Workforce Development

CRN KSS continued to work with partners to train and develop the region’s research workforce. After the pandemic more training was held face to face and more NHS colleagues started on their research career journey by joining the Associate Principal Investigator Scheme.

In 2022/23, 2,831 people from Kent, Surrey and Sussex accessed learning and training courses on NIHR Learn and via face to face courses.

Online learning remains the most popular route to GCP Learning.

1,387 people undertook GCP Introduction
976 undertook GCP refresher
8 people completed the Fundamentals course

72 trainees joined the Associate Principal Investigator (API) Scheme in 2022/23 from across five divisions.

In total, CRN KSS has 16 Accredited Clinical Research Practitioners (CRPs) and there are 139 CRPs on the Directory.

Out and about meeting our community

Engaging new wider health and care settings with research

Members of the CRN KSS core team attended two events in March to talk to audiences from wider health and care settings about research.

The team attended The Care Showcase, an event for local and national organisations within the care sector, held at Brighton Racecourse. Colleagues from NIHR Applied Research Collaboration Kent, Surrey and Sussex joined CRN KSS on an exhibition stand where they spoke to attendees about health and social care research and Join Dementia Research.

Research Delivery Manager for Social Care, Becky Dilley delivered a seminar about new opportunities available to providers and their clients in social care and community settings to be involved in research in Kent, Surrey and Sussex, including what research funding and support is available. Colleagues from the Applied Research Collaboration Kent, Surrey and Sussex also spoke about implementation of research.

Becky Dilley and Project Coordinator, Kate Weekes attended the Community Pharmacy Surrey & Sussex Conference where they ran a breakout session on ‘Clinical Research for community pharmacy – how to get involved’. Becky and Kate spoke about the invaluable support community pharmacies in the region gave to the COVID-19 PRINCIPLE trial. They also discussed any barriers that pharmacies have in taking up research opportunities and how these challenges can be overcome. Many of those attending expressed an interest in joining a Special Interest Group to focus on how CRN KSS can offer more research opportunities to pharmacies and how any research ideas they may have could be developed together.

Experts from across Europe share best practice at GI event

Nearly 100 delegates attended an NIHR conference with the theme ‘Optimising recruitment to GI clinical trials via multidisciplinary teams (MDTs)’. The event was jointly organised and funded by CRN North West London, CRN South London, CRN North Thames and CRN Kent, Surrey and Sussex. It was also sponsored by Evergreen Life and Servier.

The aim of this event was to enhance the understanding and contribution of MDTs to clinical and translational research, with the view that all GI patients should have the opportunity to participate in research during their diagnosis and treatment for cancer.

Talking to school children about careers in research

Members of the Research Delivery Team spoke to over 100 Kent and Medway secondary school students about health and care research and careers in research at a medical fayre. The medical fayre was organised by Professor Rahul Kanegaonkar, CRN KSS Innovation Champion, and held at Canterbury Christ Church University’s Medway Campus. It was an opportunity for the team to engage and raise awareness of research in this age group and bring research to the attention of those medical representatives participating in the event.

The Research Delivery Team’s session was interactive and gave the students a wealth of information about research, including the history of health research, examples of where research was conducted unethically in the distant past.