Published: 9 April 2025

By Liz Perraudin (Clinical Policy Manager), AMRC

We recently ran workshops, with charities and wider sector organisations, looking at challenges and opportunities for research in the Government’s 10 Year Health Plan.

The three workshops focused on research into multiple long-term conditions, rare diseases, and child health – areas we identified as particularly underserved in research. They were organised in collaboration with the Richmond Group of Charities, Genetic Alliance UK, and the Royal College of Paediatrics and Child Health (RCPCH).

We learnt a huge amount, and shared summaries of the discussions with the 10 Year Health Plan team at the Department for Health and Social Care (DHSC), as well as the Research, Innovation and Life Sciences Enabler Group.

While specific and unique challenges came up in each research area, there were clear themes that spanned all three workshops.

Across all workshops, the message was clear – research is vital to improve health outcomes

Workshop participants were clear that, without research, the progress that’s needed won’t be possible, and that some serious catching-up is required. In rare disease, for example, we heard that most research activity is in just 23 of over 7000 rare and genetic conditions. And only 4% of UK public and charitable research expenditure is on child health. This is despite children and young people making up 21% of the population and accounting for roughly 14% of NHS spending and healthcare costs.

Three words for success: inclusive, innovative and integrated

We asked participants to think of three words to describe a successful 10 Year Health Plan, where research is effectively embedded in the NHS. They said: inclusive, innovative and integrated.

These themes were reflected in the subsequent discussions, which centred on the Government’s proposed ‘3 shifts’: analogue to digital; hospital to community; and sickness to prevention.

The shift from analogue to digital needs comprehensive, accurately coded and accessible health data

While attendees broadly welcomed a move from analogue to digital, they stressed that comprehensive, accurately coded and accessible health data is needed for this shift to work effectively in research and care. We heard, for instance, that there’s currently no clear picture of how many people are living with muscular dystrophy in England. Another example was that it’s often too difficult to link up data sets that could help researchers better understand who’s at risk of co-morbidity, and the best ways to prevent it.

Attendees also highlighted the importance of patient and public confidence in how health data is used – and the risk that, without it, potential innovation that this data could support will be lost.

There’s exciting potential in the shift from hospital to community, but only if coupled with investment in resource, capacity and infrastructure

We heard enthusiasm in all three workshops for the research benefits of shifting from hospital to community, alongside some notes of caution. Attendees were excited by the potential for more research to take place closer to people’s homes – which would create more inclusive opportunities for people to participate in clinical studies.

We also heard how this shift would support research happening in the relevant place. In asthma, for example, most routine care is provided in primary care settings (e.g. GP surgeries, community pharmacies), but studies often take place in large tertiary hospitals. Another example was that when research needs to take place in specialist settings, such as in rare disease research, the burden on participants could be reduced by doing parts of studies (e.g. routine monitoring) in the community.

While there was broad agreement on some of the benefits, participants concluded that success in this area would depend on investment in resource, capacity and infrastructure.

The shift from sickness to prevention is only possible with research – and more of it is needed

The workshops considered primary prevention, where action is taken to try and stop problems happening, and secondary prevention, where action focuses on detecting a problem as early as possible, to develop interventions that reduce health deterioration and complications.

Attendees outlined how research is vital in primary prevention, to better understand and tackle the risk of multi-morbidity, particularly in minority and underserved groups, where prevalence is higher. We also heard how primary prevention research is crucial in child health, as early intervention can help children stay well into adulthood.

Secondary prevention and early diagnosis were also identified as priority research areas. For example, the NHS spends an estimated £6.2 billion a year on treating largely preventable diabetes-related complications. Secondary prevention research that helps limit these complications could reduce the cost to patients’ health and to the health service.

There was a clear call for barriers to research participation to be addressed

Across all three workshops, we heard loud and clear that diverse recruitment to clinical studies must be prioritised. Examples of barriers to research participation included unnecessary exclusion criteria, which often mean people with multiple long-term conditions can’t take part in studies, and the number of single-site studies in rare disease, where small patient numbers, spread across the country, make participation particularly challenging.

A successful 10 Year Health Plan, that truly embeds research into the NHS, will have to harness the opportunities and address the challenges outlined above if it is to improve health outcomes for people across England and drive economic growth.