Key points
In recent years the UK has fallen behind in research, which means the NHS, healthcare professionals and the UK population risk reduced access to new treatments, diagnostics and state-of-the-art care. Although signs of recovery are starting to emerge, combining the resources and expertise of NHS, charity and life science industry partners is essential for changing this trajectory. This report, based on a roundtable discussion between the NHS Confederation, the Association of the British Pharmaceutical Industry (APBI) and health charity leaders, explores practical ways to boost UK research and engender a culture of innovation.
Despite barriers to building a culture of cross-sector collaboration in health research and innovation, good practice exists. Charities are critical partners in the research and innovation ecosystem, bringing resources, expertise, public profile and trusted brands, convening power, professional networks, links with people and communities, and mechanisms for sharing good practice. More can be done to raise awareness of the value that working with health charities can offer the NHS, and this report highlights research case studies where charities play a key role.
Insights from the roundtable convened to discuss these issues suggest there are five practical action areas that can drive progress:
1. Define a shared purpose.
2. Research and build on what already exists.
3. Invest in infrastructure for mainstreaming research and spreading innovation.
4. Value success to stimulate research and spread innovation.
5. Equip teams with the capacity to collaborate and change culture.
This report is relevant to national and local policymakers, as well as those who are supporting patients and healthcare professionals to improve outcomes from research and innovation in systems. This includes those with leadership responsibilities for driving research, innovation and transformation at system or local level, managers with day-to-day responsibility for implementation, and charities leading on research, engagement and network development.
Background
Across the UK, scientists, healthcare professionals, entrepreneurs, charity workers, academics, policymakers, funders, patients and carers are working to realise the potential of research and innovation for health and wellbeing. But in recent years, the UK has become a less attractive destination for clinical trials, largely due to issues of capacity, resourcing, cost and process complexity. Signs of recovery are starting to emerge but, as a consequence, people with health conditions, healthcare professionals and the NHS are failing to maximise the benefits of new diagnostics, technology, treatments, therapies and preventative approaches.
In 2022/23, 16,000 fewer people – a 27 per cent fall – participated in industry clinical trials compared to five years earlier. With the ever- rising volume and complexity of healthcare needs, this trajectory has to change. Harnessing the potential of health research, innovation and technology is essential for future population health and wellbeing, NHS sustainability and the economy.
Recognising current significant pressures on NHS staff, national work is underway to identify how to maximise the benefits of spreading and scaling research activity and innovation adoption.
The O’Shaughnessy review advised the government on how to transform the UK environment for commercial clinical trials. The Hewitt review suggested how a thriving research culture can support integrated care boards with their duty to facilitate and use research to improve services. The Major Conditions Strategy is expected to touch on the role of innovation to improve outcomes in pathways from prevention to treatment. The Innovation Ecosystem Review Programme seeks to address ongoing challenges in the adoption and spread of innovation and drive improvements in the health innovation ecosystem.
Capturing and sharing the learning from existing examples of cross-sector collaboration between the life sciences industry, charity sector and the NHS can support these initiatives.
This report sets out insights from a discussion between the NHS Confederation, the ABPI and health, industry and charity leaders. They explored how to maximise the potential of collaboration between the NHS, health charities 1 and the life sciences industry to boost research and innovation in health. The roundtable that led to this report included representation from England and Wales and draws on examples of clinical trials operating across the UK.
During the roundtable, senior leaders shared experiences and case studies of collaboration in research and innovation dissemination and discussed how to better leverage the resources and expertise of charities and industry in order to build a culture of research and innovation across the NHS.
"With a threefold increase in long-term health conditions predicted in Wales over the next 15 years, we need radical leaps in the innovation space.”
Dr Leighton Phillips, Director of Research and Innovation, Hywel Dda University Health Board
Chapter footnotes
- 1. *The term ‘health charities’ in this document refers to the broad spectrum of charities and other voluntary and civil society organisations with an interest in and impact on the health and wellbeing of people and communities – including current and potential future users of health and social care services, people facing health inequalities, people living with particular conditions and disabilities, and their carers and families. ↑
Barriers to cross-sector collaboration
The roundtable discussion identified cultural, structural, financial, technical, psychological and equity issues impacting the UK’s ability to fully benefit from game-changing health research and innovation.
Barriers to developing a cross-sector collaborative culture in research and innovation fall into emerging themes:
| NHS capacity constraints |
|
| Lack of awareness of potential partners |
|
| Different cultures within and between sectors |
|
| Perception of misaligned priorities |
|
“ Health innovation has the potential to get us off the never-ending hamster wheel of day-to-day delivery, but to realise this opportunity we need people to have the time and headspace to get involved.”
Matthew Taylor, Chief Executive, NHS Confederation
Case studies
The roundtable considered three collaborative research case studies driven by health charities:
1. Diabetes UK – moving towards national screening for type 1 diabetes
To explore the feasibility of national screening for type 1 diabetes, Diabetes UK and the Juvenile Diabetes Research Foundation are funding the early surveillance programme for autoimmune diabetes (ELSA) study.
| Context | Type 1 diabetes is an autoimmune condition that affects the pancreas and the essential production of insulin. In recent years research has shown that certain antibodies can be found in the blood many years before symptoms appear. This now makes it possible to identify people at risk of developing the condition with a view to enabling more effective early intervention, management and treatment. In time, this could include use of a new medication that delays the onset of the condition, which is already available in the US. |
| How it works | ELSA is screening 20,000 children between the ages of three and 13 across the UK. The study is looking at different approaches to screening – including through GP practices and online via postal blood spot tests. Families with children found to be at risk of developing the condition will be supported through ongoing monitoring and education, and access to relevant clinical trials. The study is taking a partnership approach with:
|
| Impact and learning | Developing a national screening programme for type 1 diabetes and making the relevant treatment available in the UK could prevent life-threatening complications of type 1 diabetes, delaying its onset or potentially reducing the incidence and implications for individuals, their families, employers, healthcare services, professionals and support services. At the same time, population-wide uptake of screening is well known to have its challenges. Often the population groups most likely to benefit are least likely to engage with screening programmes, due to a whole range of social, practical and cultural issues. ELSA seeks to determine the most effective way of recruiting children across different socioeconomic and ethnic groups. Twenty thousand ELSA participants are needed to ensure the study provides the level of evidence needed for the UK National Screening Committee to consider a national screening programme. Learning from ELSA already shows that having an organisation like Diabetes UK at its heart can help recruitment of participants. By working with its existing patient community and communications channels, especially through social media, Diabetes UK was able to recruit 2,000 people almost immediately. This has grown rapidly to more than 11,000 people and recruitment continues at a pace, far exceeding expectations for a study of this kind. Recruitment to the study is also helpful for the wider research ecosystem in the UK. Clinical trials for new treatments that aim to prevent or delay the onset of type 1 diabetes will also need to take place before these promising new treatments can be used in the UK. With the significant drop in participation in commercial clinical trials in the UK in recent years, engaging people in this way – pre-trial through existing networks and patient communities nurtured by the charity – also aims to help ensure there is a ready-made cohort of people willing to participate in trials of new type 1 treatments. This will help ensure that the right people benefit throughout the trial process, as well as helping to bring new treatments to market in the UK as quickly as possible. |
The case study demonstrates the important role of charities for:
| |
Visit ELSA for more information.
2. Cancer Research UK – finding new uses for existing medicines to treat rare cancers
To determine the efficacy of existing treatments on rare cancers, Cancer Research UK is sponsoring and managing the UK DETERMINE trial.
| Context | Cancer Research UK is one of the world’s largest independent funders of cancer research and innovation, with a £500 million annual research and development budget. Given its size and reputation, Cancer Research UK often sponsors more high-risk trials and has a network of experimental cancer medicine centres across the UK. This includes for rare cancers, where treatments are traditionally less explored due to the challenges of recruiting the required numbers of participants for a clinical trial. |
| How it works | The DETERMINE trial is trying to find new treatments for rare cancers by looking at whether existing cancer medicines licensed for a particular use are effective regardless of the tumour that is present and could therefore be a candidate for wider licensing. Following an ‘umbrella basket trial’ approach, existing medicines being tested constitute different treatment arms of the trial, all following the same overall protocol for testing. Using this design, each treatment arm only needs to recruit 30 patients to provide a statistically significant result. It is open to children and young people as well as adults with any rare cancer type that has been genetically screened. Approved participants will be enrolled onto a treatment arm relevant for their cancer, and then treated and monitored to look at the effect. The trial is following a collaborative approach led by the University of Manchester, with Cancer Research UK’s Centre for Drug Development working in partnership with:
|
| Impact and learning | It is not always easy for industry to collaborate in niche areas or if there is a high risk of failure. Based on its strong relationships across industry and the distinct treatment-arm design of the trial, Cancer Research UK was able to bring together multiple industry collaborators on this trial. With rare diseases, international collaboration is often vital for progress. While the DETERMINE study is unique to the UK, Cancer Research UK is collaborating with similar studies across Europe through a consortium. Given many health charities are part of global networks for their condition, this helps them to see the bigger picture and share research and innovation across borders. Early partnership with NHS England and the Cancer Drugs Fund has led to data of positive results being shared while the trial is still ongoing. This means that the evidence from this trial can help speed up the process of licensing effective existing medicines for wider uses. |
The case study demonstrates the role of charities in:
| |
Visit DETERMINE for more information.
3. Asthma + Lung UK – improving treatment for people with severe asthma
To improve treatment options for people with severe asthma, Asthma + Lung UK is working in partnership to support two clinical trials – one for children and one for adults.
| Context | People with severe asthma, around 5 per cent of asthma sufferers, experience life-threatening symptoms regularly. It is therefore a priority for these people to get their asthma under control. In recent years, a group of medicines, called biologics, have revolutionised treatment options. However, there is still a need for more and better options, especially for children and adults with severe treatment-resistant asthma. |
| How it works | Asthma + Lung UK regularly consults with its patient community, and research has repeatedly found that finding effective treatments for severe asthma in the UK is a priority for people. Understanding this, Asthma + Lung UK has sought out partners to try to respond. This includes partnering with others on two clinical trials funded by the National Institute for Health and Care Research (NIHR) to ensure that people with severe asthma are included from the outset in the design of clinical trials:
|
| Impact and learning | Finding treatments for severe asthma is not only a priority for people with asthma. It is also a priority for the health service, as severe asthma accounts for around 50 per cent of NHS asthma spend. To enable more clinical trials to take place, new infrastructure and approaches need to be developed. The two trials Asthma + Lung UK is involved in are trying to do this in different ways, and each tells a different story.
While the delay in the BEAT trial may be seen as a failure, it is in fact bringing out some important learning and reflections for the research partners and team around the potential need for modification given the enduring impact of COVID-19:
Beyond the impacts of COVID-19, insight gathered by Asthma + Lung UK identifies a number of other reasons why recruitment to clinical trials for respiratory trials is challenging:
|
The case study demonstrates the important role that charities play in:
| |
Charities: an underused resource
Charities offer often underused resources and expertise in research and innovation. Collaborating with them can benefit the NHS and industry.
Charities offer:
- public profile and trusted brands with longstanding experience of partnership working and driving change
- existing networks, partnerships and relationships with local, national and global academic institutions, clinicians, industry and UK government officials, commissioners and policymakers
- resources and infrastructure to contribute to successful research, including the design of proposals, support for funding applications and participation in steering groups
- an experienced charity workforce that can support successful research design, funding proposals and steering committees
links with patients and communities to help:
- convene different groups to support patient recruitment into clinical trials
- better understand the needs of patients, carers and research participants and help to reduce risk of failure in research and adoption of innovation
- support faster access to treatments through involvement in trials of patient community
- mechanisms for sharing good practice across areas, to communities, regions and national actors – enabling the adoption of effective innovation.
Collaborating with charities can provide benefits for the NHS, including:
- helping NHS researchers and clinicians understand people’s priorities and deliver projects that improve outcomes
- providing a route to discuss and solve the real-world problems in the NHS that need addressing by research and innovation
- offering mechanisms for clinicians and NHS institutions to engage with research, which is likely to lead to better patient outcomes
- supporting development of research infrastructure at scale
- supporting innovation in prevention, diagnostics and treatment to spread between national, regional, system, place and neighbourhood levels, and across primary, secondary and community care as needed.
These collaborations can also provide benefits for industry including:
- supporting faster development and adoption of new approaches to prevention and treatment
- enabling risk-sharing approaches
- expanding access to more diverse skills, experience and resources for problem solving
- increasing depth and breadth of understanding about patient experience and care pathways
- building trust and strategic relationships that make it easier to identify future innovation opportunities.
Driving change: practical actions
1. Define what is being discussed
What we heard |
|
What needs to happen | |
| ✓ | Articulate clearly and consistently – in relevant policy, strategy, review, planning and other documents – that the rationale for developing a collaborative research and innovation culture in the NHS is to improve health and wellbeing of people and transform health systems and services. |
| ✓ | Spend time upfront to develop shared understanding about terminology – the purpose of working together and what partners hope to achieve. |
| ✓ | Involve charities at an early stage – as trusted parties and brokers with relevant skills, resources and community connections – to ensure that people are involved from the outset, that what matters to them is heard by decision-makers, and that research and innovation become better targeted at outcomes that matter to people. |
| ✓ | Consider what clinicians and managers on the front line identify as priorities –work by NHS England’s horizon scanning and demand signalling team could be helpful resources, as well as resources such as the National Survey of Local Research and Innovation Needs of the NHS. |
2. Review and build on what already exists
What we heard |
| There are existing examples of good practice to build on to support the development of a collaborative culture in research and innovation. We heard how: |
|
What needs to happen | |
| ✓ | Conduct a review to understand the current landscape and avoid duplication of effort. |
| ✓ | Engage with current stakeholders and identify who should be involved as a partner or source of insight. |
| ✓ | Identify where challenges need to be overcome and gaps need to be filled. |
| ✓ | Where needed, look to establish new mechanisms and infrastructure or approaches for research and innovation. |
Examples of collaboration in research and innovation | |
| In local systems | |
|
|
|
|
| In clinical areas | |
|
|
| Existing tools | |
| |
| In practice | |
| |
3. Invest in the infrastructure for mainstreaming research and spreading innovation
What we heard | |
|
|
What needs to happen | |
| ✓ | Seek partnership with existing networks and bodies in the charity sector and medical professions, and consider how to work with these bodies for sharing good practice and spreading innovation across conditions and issues. Good practice should flow from local practitioners and system leaders to regional and national bodies, and vice versa. |
| ✓ | Prepare the NHS for the future by adopting the NHS Long Term Workforce Plan as a first step enabling staff to be upskilled in research and innovation can unlock the potential to improve quality of care. |
| ✓ | Give clinicians the resources they need away from the front line to lead or be involved in research and innovation. |
| ✓ | Establish health innovation networks in oversight roles to facilitate cross-sector partnership working, and sharing and spreading good practice. |
| ✓ | Look at how innovation and effective interventions are spread in areas outside of health, such as education. |
Examples of infrastructure to mainstream research and spread innovation | |
|
|
4. Value success to stimulate research and spread innovation
What we heard |
|
What needs to happen | |
| There is more to learn but finding ways to motivate people, recognising that helping them to get what they want out of a research and innovation collaboration, is an important driver of successful collaborations. Some ways to put this into practice include: | |
| ✓ | motivate and enable people in local communities and health systems to communicate their priorities for research and innovation to decision-makers to drive more targeted and therefore useful research |
| ✓ | work together to ensure that the way partners collaborate meets individual as well as collective goals. Consider the different ways this can be handled in research design and formation of collaborations and partnerships by looking at case studies and existing practice |
| ✓ | recognise that money can be a motivating and necessary factor and ringfencing local funding or dedicating a percentage of national research budgets to the spread of innovation through collaboration are two ways money can motivate a collaborative culture in research and innovation that improves health and wellbeing. |
5. Equip teams with the capacity to collaborate and change culture
What we heard |
|
What needs to happen | |
| ✓ | Invest in the development of a collaborative culture in research and innovation by making it someone’s job. |
| ✓ | Create dedicated roles for building relationships and sharing understanding about the value and practical ways of working in partnership with charities and the life sciences industry at different levels within the system. |
| ✓ | Adopt standard approaches and embed throughout organisations to ensure consistency and momentum is maintained. |
Where to look for practical learning about creating capacity for changing culture and building collaborations |
|
Stakeholder reflections
Acknowledgements
About us
