Our response to the NHS 10 year Health Plan consultation

Read our full response to the questions set out in the consultation:

What does your organisation want to see included in the 10-Year Health Plan and why? 

The Health Research Authority (HRA) is an independent arms-length body of DHSC and part of the NHS family. It works to make the UK the easiest place in the world to do research that people can trust, helping drive economic growth and improve health outcomes. The HRA does this by operating as a connecter and enabler in the health and social care research system. It manages research approvals and underpins the work of others through digital systems and partnerships. We were established with an objective to protect participants and potential participants in health or social care research and to promote their interests, including promoting transparency in research. We use our functions, including a responsibility to coordinate and standardise the practice of research regulation, to increase public trust and improve the UK’s ability to do world-leading health and social care research.

Health and social care research is integral to improving care and population health and increasing the sustainability of the NHS by ensuring it supports research, innovation and development to stay fit for the future. Excellent healthcare and high-quality research go hand in hand.

To realise this, the 10-Year Health Plan should do two things:

1. Recognise research as part of high-quality healthcare and embed it throughout the NHS.
   This means options to take part in research are routinely included in care conversations, and care professionals routinely contribute to delivering research and are confident to use its findings.

Research into healthcare and care delivery is integral to high quality health and social care. It allows us to develop new treatments and diagnostics and informs how best to deliver health and care services. This supports staff satisfaction - recruitment and retention is higher among staff who are involved in research - and is central to resolving public health challenges and helping people to stay well.

Research intensive institutions deliver better clinical outcomes - patients who are treated at a research-intensive institution do better irrespective of whether they are involved in research. Ensuring research is part of clinical decision-making options is valuable, particularly where there are limited treatment options such as rare diseases, novel interventions or in health emergencies. Investing in health and care research also produces high returns for society. Every £1 of public investment in medical research delivers a return equivalent to around 25p every year, forever.. Research can, and does, transform health and care.

Embedding research in the system will strengthen the NHS’s ability to address current challenges, including addressing health inequalities, and ensure that the NHS can continue to meet the needs of the future. Research findings will be crucial to effectively embed the three shifts with public confidence. For example evidence will be important to inform the best ways to deliver healthcare in different settings, help understand how to apply technology well and better understand the causes of sickness to inform prevention:

• shift 1: moving more care from hospitals to communities
• shift 2: making better use of technology in health and care
• shift 3: focusing on preventing sickness, not just treating it

The 10-Year Health Plan provides the opportunity to fully realise the value of research to health and care in the UK. To realise these benefits there needs to be a concerted effort to support the whole research pathway, to increase capacity and capability throughout the system to support and deliver research at pace. This will ensure the UK has a world-class clinical research infrastructure, enabling the UK to continue to be competitive in attracting life sciences investment.

This will require ongoing investment and engagement across the healthcare system to better coordinate and streamline the set-up and delivery of health research, including using digital technology well. It will be important to standardise approaches, invest in the sustainability of the system and support coordinated action to address wider systemic delays.

2. Embed research in a way that people can trust so that they are confident to take part and use research findings.

People centred research, done with and for everyone, will be key to improving outcomes and addressing health inequalities.

Including a diverse group of people in research provides a better understanding of the most effective prevention, treatment and care for different groups of people. This information can inform the way that the NHS provides care to ensure people get the best healthcare for them and so reduce health inequalities. We know that doing research in more people-centred ways can increase access to research and confidence to take part, which is crucial to widen participation. For example, most UK adults are more likely to participate in a study where members of the public ensure that participant information is easily understood (55%) and research findings are accessible (54%).

The revolution taking place in data and life sciences offers opportunities to use health data to improve people’s health and wellbeing and accelerate scientific innovation. This is only possible if we find ways to safely, securely and effectively use health data that people can trust so they are confident to allow their data to be used in this way.

The 10-Year Plan should embed research as part of high-quality care in an inclusive, people-centred way, so improving care for everyone.

What does your organisation see as the biggest challenges and enablers to move more care from hospitals to communities?

Research that helps better understand how to provide healthcare effectively will be crucial to underpin successfully moving more care from hospitals to communities. More health and social care research in and for communities will support finding solutions and innovative ways to provide care in the community. This will in turn offer opportunities to widen participation in research in different care settings, improving the UK’s ability to support high-quality clinical trials, making the UK a world-leader in clinical research. Designing and delivering healthcare services (including research) in people-centred ways is key to ensuring care can move to where people are. Enabling research to happen where people are will mean care is more likely to be based on evidence that it is relevant to them.  Embedding research as part of high-quality care across all settings and continuing to work to address organisational barriers that currently make it challenging to do research in communities will be key to success.

Enablers

• Integrated Care Systems (ICSs) in England, supported by valuable research infrastructure such as the Research Development Network and Research Engagement Networks, will play an important role in enabling care in different settings. Embedding and investing in research at an ICS level provides an opportunity to improve health outcomes for individuals and communities. Research taking place in different care settings will mean more people doing research, increasing capacity and better enabling research delivery. This can also play an important role in building new infrastructure to provide care. Building this capability will also support greater, more diverse participation in research by supporting research to take place in community settings, creating more different ways for  people to take part. The HRA can play a key role through its promotion of coordination and standardisation to support the embedding of research in ICSs. There may be the opportunity to learn from regional delivery models operating elsewhere in the UK.
• Greater research delivery in primary and community care will enable us to fully unlock the potential of clinical trial delivery in wider care settings, including through establishing regional models for research delivery in the community. This can increase the UK’s ability to support high-quality clinical trials and widen participation. It will also help increase research that looks at how to prevent disease, which will support reducing the need for care in hospitals and the development of healthcare that can be provided in a wider range of community settings.

Challenges

• There are currently organisational barriers within the NHS that make it challenging to do research in communities. This includes a lack of clarity around the lawfulness of data access and sharing and nervousness about regulatory expectations, including inspection and information governance requirements. There is also a lack of research capacity and capability across the NHS. The HRA has already successfully worked alongside partner organisations across the UK to help reduce some barriers and better support clinical research, including working with partners to establish the National Contract Value Review process for commercial contract research. An NHS working more effectively as one that supports care across and beyond organisational barriers will make it easier to do research in communities and support greater participation in research. In doing so it is important to be aware that different sectors may use different systems, approaches and language that must be navigated to support working together.
• Local authorities have the potential to do more research in different care settings, which will support moving care from hospitals to communities. However, research activity, and confidence to take on research, varies across local authorities. Greater support for local authorities to make more informed and consistent decisions about research applications is needed. The HRA are currently exploring guidance to support local authorities when considering participating in research.
• Community care services are resource constrained and often supported by multiple partners including the public sector, private sector and charities. Investment and coordination will be needed to support them to do research well.

What does your organisation see as the biggest challenges and enablers to making better use of technology in health and care?

Better use of technology in health and care must be supported by robust research. Research plays a crucial role in ensuring that technology contributes to making the NHS fit for the future. The HRA can support those developing digital health solutions by making it easier for them to find out what they need to do to earn research approvals and do the research to develop their technology in a way that people can trust. Technology can also enhance the HRA’s productivity by improving efficiency and making our systems easier to use through digital transformation.

Enablers

We already use technology well to enable research that people can trust in the NHS and have dedicated resources to improving this: All health and care researchers use the HRA’s digital services and UK-wide partnership to seek regulatory approvals. The UK is the only country in the world to offer a single online system to apply for the required approvals for research to go ahead from a wide range of regulators. The HRA is currently undertaking a major digital transformation programme to replace and upgrade this system. This will provide a platform to better connect-up the processes for health and social care research in the UK, and guide users through the right activities. This will use standardised data to better support interoperability across the research processes. The newly developed system will help make the UK a great place to do research people can trust by connecting processes for health and social care research and helping people work together to plan, approve, set up, manage and complete research. For every £1 invested in updating the HRA’s digital systems to reduce duplication and make the UK a better place to invest in research, this will attract £3.10 into the UK economy and will save the NHS £1.40. Realising the goal and benefits of a joined-up and interoperable system requires sustained investment, supported by strategic and well-planned implementation alongside leadership of the importance of research as a part high-quality healthcare.

The HRA is working in partnership alongside other regulators to standardise and create simplified pathways through the research system to make it easier to develop and deploy AI healthcare products in a way that people can trust. A Royal Society report from May 2024 found that the UK is well positioned for growth in the area of AI in healthcare, second only to Germany in Europe.  Recognising and building on that potential, the HRA is involved in cross-partner initiatives such as the AI and Digital Regulations Service (AIDRS) to support this area of growth. This partnership between NICE, CQC, MHRA, NIHR AI Incubator and HRA fosters a supportive environment for AI development and deployment. By providing clear and accessible regulatory guidance, this collaboration enhances the quality and compliance of AI products, ensuring patient safety and better healthcare outcomes.  Engagement with systems like AIDRS and regulators, with investment to match, at the earliest stages of research help to alleviate barriers to development and  accelerate the deployment of AI in life sciences to tackle the biggest health challenges of our generation.

Challenges

Ensuring research into new technologies, as well as research using new technologies, is conducted in a way that the public can trust without introducing barriers or slowing down innovation unduly. It is essential to support research into new technologies and new ways to do research in a way that people can trust. New technologies and new ways to do research can raise new ethical concerns or present existing concerns in new ways. There can also be a lack of clarity and consistency in the interpretation of how existing processes apply and where new processes may be needed, for example in access to data. This can erode public confidence in research and the confidence of researchers to navigate the process. Operating with transparency and public engagement and involvement throughout will help ensure that people are confident to take part in research and use its findings and researchers are confident and able to develop new technologies, which is crucial to make better use of technology in health and care. A lack of clarity and consistency about information governance requirements, and concerns about data access and data sharing, can prevent technology for research being implemented in NHS organisations.

Digital transformation needs digital, data and technology professionals and a digital skilled workforce to be successful. The NHS needs to be able to attract and retain the highly-skilled staff who can support and maintain digital transformation as well as providing the support and training to its staff so that they can use new technologies well.

What does your organisation see as the biggest challenges and enablers to spotting illnesses earlier and tackling the causes of ill health?

Research plays an essential role in better understanding ill health and discovering preventative treatments and interventions.

Enablers

The UK is an attractive place to do high-quality healthcare research which provides more information about how to stay well and the development and treatment of ill health in the UK population.

The UK is competitive in attracting global clinical research. We are consistently finding out more about our population and health conditions as diverse trials provide more robust clinical data which contributes to improving prevention and care. We're working with our partners, including NIHR, NHS England and MHRA to help make sure clinical research can improve the health of the whole population. Together with MHRA, we’re producing a set of questions and supporting guidance for research teams to consider when they design clinical trials and clinical investigations. This will help make sure that research is designed to include people who could benefit from the findings, and that people underserved by research are not overlooked.

The UK public is largely confident to take part in research. A better understanding of the health for the whole UK population can only be achieved if everyone is confident to take part in research. 68% of UK adults said that they would take part in research if asked, with 75% confident that they would be treated with dignity and respect if they took part. This is in part a reflection of the good culture and practice and robust checks and balances in the process that create a research system that people can be confident in. It will be important to support this system to keep pace with new types of research to maintain this confidence.

The NHS Dataset offers rich health data spanning decades. These datasets, when linked with other health-relevant sources beyond the NHS can provide powerful insights for improving health outcomes, delivering equitable health and care services and driving innovative research.  It is important that data is accessed for research in a way that people can trust. We are supporting the development of NHS Secure Data Environments (SDEs) in England by offering bespoke guidance to inform the ethical review and legal approval of the SDEs so that people can trust them. We continue to provide advice on the development of the network of SDEs to ensure data is accessed subject to the Five Safes (safe projects, safe people, safe data, safe settings and safe outputs).

The UK is able to support large-scale longitudinal population research studies that people are confident to take part in. These provide vital insights into how diseases may develop, how the population’s health changes and the impact of preventive actions and treatments.

Challenges

The UK position in the global rankings for industry clinical trials dropped between 2017 and 2019. For clinical trials, the UK has a longer length of time between first application to a regulatory authority and the first patient receiving a first dose compared to most comparator countries. NHS sites lack capacity to support research on the ground and set-up and recruitment of patients can take longer than the approval process.

Parts of the population are less likely to take part in research. This reduces our ability to understand the causes of ill health across our population, compounding health inequalities. Most UK adults say they would take part in research if asked (68%) but almost a third of black adults are less confident that they would be looked after whilst taking part in research (30%), compared to Asian adults (20%) and white adults (18%)/. The HRA is working as part of the research system to increase trust in research so more people are confident to take part in research and use its findings. This includes working with partners across the system to set consistent expectations for public involvement, diversity and inclusion from idea to completion of a research project. Enabling research outside of hospitals and in community settings will also support greater, more diverse participation in research.

The Sudlow report shows that health and care professionals, researchers and policymakers face many obstacles and delays in accessing, linking and analysing health data to improve people’s care and lives. Maintaining patient trust is essential to doing such data-driven research with public trust. Greater public engagement and involvement to understand people’s expectations when it comes to the use of their data will be crucial to doing this. For example, accessing patient data in a way that people can trust offers a valuable opportunity to find and contact people about research that may be relevant to them. Engagement and involvement are crucial to inform how to do this well.

Please share specific policy ideas for change, including how you would prioritise these and what timeframe you would expect to see this delivered in.

Quick to do- that is in the next year or so

• The 10-year plan should provide clear leadership by signalling the value of research in transforming the NHS over the next 10 years and set out action to embed research as part of high-quality healthcare that should be accessible to all.
• The value and role of volunteers in supporting the work of the NHS should be recognized. In England almost 1000 people volunteer their time as members of Research Ethics Committees and the Confidentiality Advisory Group, playing a vital role in making sure health and social care research is ethical and fair to patients. Without these volunteers, health and social care research in the UK could not be reviewed in the same high-quality way as currently. Many of these members are registered health professionals who should be supported to ring fence their time to do this.
• Continue to support and prioritise work to build capacity and capability throughout the healthcare system to support and deliver research as part of high-quality healthcare. This will ensure the UK has a world class clinical research infrastructure which will make us competitive and attract life sciences to the UK, bringing benefits to health and wealth. This includes taking part in work to streamline and reform the set-up and delivery of clinical trials through digitalisation, implementing new UK clinical trial regulations, introducing nationally legal and contractual mechanisms for research sponsors and addressing wider systemic delays by reducing duplication, creating efficient pathways, and ensuring explicit guidance to reduce uncertainty.
• Support more inclusive and diverse participation in research by supporting and building on valuable initiatives such as the Research Engagement Network and taking action to improve data on the demographics of research participants. The Research Engagement Network is developing the foundation for deep community engagement that will support more diverse research participation and patient and public engagement and involvement in research. The potential to develop a platform that can be accessed not just by health and care professionals but also researchers and sponsors from across the life sciences sector to share information on what works and what doesn’t work will be hugely beneficial.
• A better understanding of the demographics of research participants will be important to inform action to widen participation. Action is needed to develop a consistent approach to collecting this information. ICSs could support the collection of research participants’ demographic data in a way that maintains people’s trust so that as a system, we can monitor if interventions to widen access and improve research inclusion is having their intended impact. The proposed single patient record also offers an opportunity to do so.
• Resolve issues of access to data by investing in data infrastructure Continue to support the development of the Sub-National Secure Data Environments and encourage reduction in proliferation of other Secure Data Environments. Whilst promising transformation is in train, streamlined access to data should continue in the interim.

In the middle, that is in the next 2 to 5 years

• Research should be specified as an activity in any contracts commissioned by the NHS so that it is clear research can and should take place in all settings and NHS commissioned services.
• Embed a more people-centred focus to research. Embedding research so that it is part of every conversation and patient interaction will be key to supporting people-centred research, making it easier for people to hear about research that is relevant to them, improving transparency and ensuring that the research is designed for the people it is for. Research becoming part of everyday conversations about care will result in greater awareness and encourage increased participation in research. This will support higher quality research, provide more robust clinical data, improve care and ensure that the NHS is fit for the future.
• Giving patients and the public greater granularity and control over how their data is used via services such as the NHS App, including applying the National Data Opt Out. Raising awareness of the ways in which data is used for planning and research is important so that members of the public can make informed choices about their data and be confident in doing so.
• Continue to build and maintain trust in the access of healthcare data for research. There is a relatively high-level of trust in the NHS keeping patient data secure. The Public Attitudes to Data in the NHS and Social Care report 12on public attitudes to data found 83% of people trust the NHS to keep their patient data secure, with the most common concern being cyber-attacks. Action is needed to build and maintain this trust through transparent and clear information and ongoing engagement and involvement.
• Create a more sustainable and collaborative health and social care research system by improving financial flow and recognition of contribution to better reflect the value of doing all types of research13. Currently the value of doing research can be obscured by some metrics and the way the finance flows, with part of the system experiencing perverse incentives or even doing some types of research at a loss. Addressing this could increase support for all types of research across the system by ensuring research is fully-costed and benefits flow back into the system. This would enable the system to effectively support both commercial and non-commercial research, increase incentives for collaboration and improve sustainability for the future.

Long-term change, that will take more than 5 years

• Support, encourage and enable NHS staff to do and be involved in research. There should be support across the NHS workforce for dedicated time and resource to undertake high quality and trustworthy research as part of providing high-quality healthcare.