Ellie Carter, Shelford Senior Policy Fellow, writes about the work The Shelford Group is doing to broaden access to clinical trials for patients.
As part of our 2023/24 priorities, Shelford Group members collectively committed to focusing on improving access to research and clinical trials.
As part of this commitment, last December Shelford Group R&D Leads, in partnership with other NHS and industry colleagues, published a series of best practice guides setting out improvements to the set-up process for commercial clinical trials.
Our members also committed to improve access to all research trials for patients, including for those receiving treatment and care outside our hospitals,
On 16 April, the Shelford Group Medical Directors therefore hosted a multidisciplinary roundtable on broadening access to clinical trials.
This roundtable, Chaired by Miss Toli Onon – Joint Group Chief Medical Officer at Manchester University NHS Foundation Trust and Chair of the Shelford Group Medical Directors subgroup, was an opportunity for colleagues from across Shelford trusts to share initiatives from within their own organisations to respond to this challenge. This blog sets out a summary of those case studies, along with guidance on how to find out more about this work.
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The role of Shelford in broadening access to clinical trials
The Shelford Group is a collaboration between ten of the largest teaching and research NHS hospital trusts in England, providing a comprehensive range of services from community care for local populations, to highly specialised care for patients nationwide. Together our members account for almost two thirds of the country’s clinical research infrastructure as well as being anchor institutions for their regions.
Our roundtable was an opportunity for Shelford colleagues to share examples of programmes of work underway across five of our member trusts to:
- Improve access to research and clinical trials beyond specialist centres
- Diversify the pool of patients participating in research
- Build relationships with life sciences partners
- Reduce inequalities
Shelford showcase
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- Innovation in access to trials: Decentralisation of trials
Newcastle upon Tyne Hospitals NHS Foundation Trust
In 2020, the NIHR Patient Recruitment Centre (PRN) in Newcastle led the the UK’s first virtual interventional trial for Irritable Bowel Syndrome (IBS) patients. Virtual trials are remote access trials which use electronic tools to allow recruitment to, and delivery of, clinical trials without the patient needing to visit a recruiting hospital site, which could be miles from their homes. This empowers more patients to become involved regardless of their geography, and in this case resulted in significant improvements to patient recruitment and reduction in drop out rates, as well as receiving positive feedback from patients on their experience.
In tandem the PRN has developed ‘Research Plus Me’ – an online registry for people who are interested in taking part in clinical research. The registry makes it easier for people to hear about and take part in clinical trials – without needing to be recruited via hospitals and specialist clinics. Launched in 2020, the registry now has 36,000 patients and is being used for 14 studies access eight disease areas with responsibility for over 80% of recruits to served sites. To access slides from the presentation, click here.
For further information please contact Professor Yan Yiannakou – Clinical Director, NIHR Patient Recruitment Centre Newcastle
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- Innovation in access to trials and co-production with patients: State-of-the-art Research Van and ‘Vocal’
Manchester University NHS Foundation Trust
In order to facilitate participation in research studies, Manchester University NHS Foundation Trust has introduced a state-of-the-art Research Van. The Greater Manchester (GM) Research Van has been designed to deliver care and widen opportunities to be part of research in communities across GM by visiting easy-to-reach locations such as community centres and supermarket car parks. The van has visited 13 GM community locations, delivered six research trials and recruited 160 participants. The Van includes a pharmacy and clinical area containing all equipment necessary to run vaccine programmes, clinical trials, and bespoke clinical projects. It also has a patient waiting area, disabled toilet facilities and an external lift for disability access – along with sterilisation lights, air conditioning and mobile broadband on board.
Separately, the trust hosts ‘Vocal’, a not-for-profit organisation, in partnership with The University of Manchester. Vocal creates opportunities for people to find out about, and have a voice in, health research in Greater Manchester by bringing together patients, carers, artists, researchers, scientists as well as other health professionals. Their programmes of work include providing strategy, advice, delivery and support for patient and public involvement and engagement (PPIE) and co-developing and delivering projects with communities. To access slides from the presentation, click here.
For further information please contact Dr Claire Cole – Director of Research Delivery, Research and Innovation, Manchester University NHS Foundation Trust
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- Co-production with patients: Cambridge Patient Led Research Hub
Cambridge University Hospitals NHS Foundation Trust
Established in 2015, the Cambridge Patient Led Research Hub embraces the premise that patients with chronic conditions understand their condition and needs better than many medical professionals do. They may also have ideas about what research would be most beneficial to their lives but due to the complexity and cost involved in running clinical trials, most research originates with the pharmaceutical industry or academic researchers. The Cambridge PLRH supports patient-centred (patient led or co-produced) research, working in partnership with patient groups to deliver clinical studies based on their own research questions. In 2022, the hub shifted focus to primarily support rare disease research. A Rare Disease Research Network is due to be launched later this year. To access slides from the presentation, click here.
For further information please contact Dr Rona Smith, Consultant in Nephrology and Vasculitis at Cambridge University Hospitals NHS Foundation Trust & Clinical Director of the Cambridge Patient Led Research Hub
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- Working with system partners: North-West London clinical trials alliance
Imperial College Healthcare NHS Trust
The North-West London Clinical Trials Alliance represents a strategic response to the challenge of improving access to research trials, emphasising the importance of cross-sectoral collaboration and resource optimisation. Particularly highlighted by its response to the COVID-19 pandemic, the Alliance provides a case study in enhancing trial delivery and efficiency with implications for both regional and global research clinical trials research community.
In its first year the alliance successfully delivered eight COVID-19 vaccine trials, recruited over 1,600 participants and 100% of trials in the Alliance benefited from using North-West London GPs as Participant Identification Centres (PICs). To access slides from the presentation, click here.
For further information please contact Dr Suki Balendra – Director of Strategic Partnerships (Paddington Life Sciences), Imperial College Healthcare NHS Trust
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5. Using data to analyse research participation: Enrolment in clinical research at UCLH and geographically distributed indices of deprivation
University College London Hospitals NHS Foundation Trust
The team at UCLH have developed a framework for evaluating equity in healthcare research by assessing whether research at the trust is biased towards patients from areas with less deprivation. Their research showed that:
- Clinical research at UCLH has wide geographical reach.
- Nationally, enroled areas show similar distributions of deprivation indices to those without.
- In Greater London, enroled areas were significantly more deprived than non-enroled areas.
To access slides from the presentation, click here.
For further information please contact Dr Nick McNally, Managing Director of Research at UCLH and UCL & Chair of UK Research & Development (UKRD)