British Heart Foundation – Written evidence (LSI0023)

Science and innovation

1. Scientific research is one of the UK’s leading assets. Medical research is a particularly important part of this. It contributes significantly to the health and wellbeing of the public and the strength of the UK economy as a whole. For instance, a quarter of the world’s top 100 prescription medicines were discovered and developed in the UK[1].

2. This success is the result of stable, long-term investment from a range of funders: Government, charities, industry and international sources all complement and leverage investment from each other. Every £1 of charity and Government money invested in medical research generates the same amount of private sector R&D funding[2].

The role of charities in UK science

3. Medical research charities make a particularly important contribution towards the success of UK life sciences and the economic returns generated by this sector. In 2016, medical research charities funded 45% of all publicly-funded medical research in the UK, a total of £1.6 billion[3].

4. The BHF is the largest independent funder of cardiovascular research in the UK, investing around £100 million each year. We fund more than half of all academic heart research carried out in hospitals and universities, compared to 30-35% funded by the Medical Research Council (MRC) and the National Institute for Health Research (NIHR)[4].

5. The strength of UK medical research charities is unrivalled across Europe if not globally. Based on the latest data available, only three charities across Europe had annual budgets higher than €10 million for cardiovascular research[5]. These were the BHF, Wellcome and the Dutch Heart Foundation.

6. Medical research charities support the life sciences sector in a range of ways – from investing in infrastructure to developing new generations of scientists. At the BHF, our funding portfolio extends from basic science to clinical trials and population studies, and we fund people from PhDs to professors, as well as six Centres of Research Excellence and three Centres of Regenerative Medicine across the UK.

7. Charities often play a key role in supporting early-stage research, de-risking projects for follow-on funders such as industry. The BHF supports early-stage development of cardiovascular medicines and technologies through our Translational Award scheme. We invest in promising new projects to enable them to advance to a point where they are more attractive for further investment by other funders or industry. By developing the Translational Awards, we have also been able to access commercial knowledge beyond the scientific community, and cultivate a research environment that successfully facilitates translation of innovative treatments.

Life Sciences Industrial Strategy

8. The BHF responded to the Industrial Strategy Green Paper and fed into the development of the Life Sciences Industrial Strategy through the Association of Medical Research Charities (AMRC).

9. We were very pleased to see the strategy recognise charities as crucial partners within UK life sciences. In particular we welcome the recommendation to ensure the environment remains supportive of charitable contributions to the science base through enhancing the Charity Research Support Fund (CRSF).

Charity Research Support Fund

10. The CRSF is part of the quality-related research (QR) funding distributed by the Higher Education Funding Council for England (HEFCE) and is awarded to universities successful at winning charity funding. It helps unlock charity investment in research by covering the indirect costs of research which charities are unable to cover.

11. Charities do not pay the indirect costs of research because they rely on public donations and philanthropy to fund research, with donors expecting their money to be spent on research to develop knowledge and new treatments. Charities also have a legal duty to ensure their activities are consistent with and support their purpose as set out by the Charity Commission.

12. The CRSF has been fixed at £198 million per annum since 2010; a real-terms decrease of £38.7 million over 6 years[6]. Over the same time period, charity funding of research has increased from £1.1 billion to £1.6 billion.

13. The reduced value in real terms of the CRSF means that researchers in universities in receipt of charity funding are facing a significant shortfall. The risk is that the erosion of the CRSF will discourage researchers from pursuing charity funding and ultimately deter charities from investing in UK research.

14. As the UK prepares to leave the EU, medical research charities will continue to be an important source of funding for UK science and research. We believe that securing the future of the CRSF will help provide vital stability and growth for the funding of science and research in universities at a time of uncertainty. We would therefore like to see the Government take forward the strategy’s recommendation to enhance CRSF.

Data

15. We welcome the Life Sciences Industrial Strategy’s emphasis on data. We are particularly interested in the strategy’s recommendation to create national registries of therapy-area-specific data across the NHS in England and aligned with the relevant charity.

16. Through the NHS we have an unparalleled source of health data across a large, diverse population, which is an enormous asset for UK medical research. Advances in technology and innovations in genetics and other areas mean that we have a greater wealth of data to learn from than ever before, and have the potential to revolutionise healthcare in the future.

17. The BHF is committed to maximising the use of our health data resources, including through our support and funding for Health Data Research UK (HDR UK) to deliver a step change in the UK’s biomedical data capabilities and address research challenges that require a depth and scale of data that cannot be achieved through individual research programmes. Public engagement and communication about data use will also be an important part of HDR UK’s work.

18. However, much work still needs to be done to ensure that the revolutionary potential of patient data can be realised, particularly around building public trust and striking the right balance between data security and confidentiality, and ease of access for research.

19. Government must take action to realise the opportunities of patient data; the failure to record, link and share data in the NHS is compromising the care and safety of today’s patients and our ability to conduct world-class research.

20. Public confidence in how health data is used is vital. As data and technology capabilities develop, it is important there is an ongoing dialogue with the public about the benefits of collecting, storing and sharing data for research and care. As a charity, the BHF has a role to play in communicating the benefits of data sharing for these purposes, but charities alone cannot build trust.

NHS

21. We are pleased that the strategy recognises the NHS as a vital partner for a successful Life Sciences Industrial Strategy and welcome the recommendation that the Accelerated Access Review should be adopted.

22. The NHS has a crucial role to play within the UK research environment. It is responsible for the collection, sharing and use of patient data; the uptake of research results, ultimately leading to patient benefit; and provides the framework for conducting clinical research, through the NIHR and Clinical Research Networks (CRNs). The strength of the NHS puts us in a unique position and we need to utilize this to enhance our life science sector.

23. Medical research charities play a key role in facilitating research in the NHS. Between 2008 and 2014, 18% of BHF funding was carried out in partnership with the NIHR[7] and in 2016, medical research charities as a whole funded around a third of non-commercial research in the NHS.[8]

24.          Although there are examples of excellent research being conducted within the NHS, a number of barriers exist, including the funding of excess treatment costs and the time available for research The Life Sciences Industry Strategy presents an opportunity to maximise the potential of the NHS as the best place in the world to do research. This should include exploring opportunities to fully integrate research into routine NHS care and ensuring that NIHR has sufficient funding to develop and enhance the NHS as a research environment.

Implementing the Life Sciences Industrial Strategy

25. While we welcome the strategy, we have very little clarity about how it might be implemented, how many recommendations may be taken forward and how these will be decided on. In order to effectively feed into the sector deal, we require clarity on the structure, process and timeline for the deal and guidance on how to contribute to it.

26. We also lack clarity on how the Life Sciences Industrial Strategy will interact with the overarching Industrial Strategy. For instance, it is unclear how the Health Advanced Research Programme fits with the health-related challenge areas of the Industrial Strategy Challenge Fund (ISCF). To ensure the greatest chance of success, it is important that both strategies are fully aligned and support each other.

27. The complexities generated by two different strategies and two different challenge programmes have potential to cause confusion in the research community. To ensure the full engagement of the sector and successful implementation of the strategy, the process for engagement should be explained clearly and the relationship between the two strategies made as simple as possible.

28. There must also be sufficient oversight, transparency and accountability in place. This should include cross-departmental working and leadership from both the Department of Business, Energy and Industrial Strategy and the Department of Health.

29. Finally, it is important that the sector deal is used as an opportunity to think far ahead and make a long-term investment in the life sciences sector. Medical research requires foresight, stability and confidence to flourish. At a time of increased uncertainty, the Government should use the Life Sciences Industrial Strategy to reassure the sector and demonstrate a long-term commitment to its stability and growth.

Supporting the sector during and after Brexit

30. We welcome the Government position paper on Brexit and science as an important first step in addressing some of the uncertainty and concerns of the medial research community. However, there are many areas where we still lack commitment and clarity.

31. Scientists in the UK are making long-term decisions about the future of their research, right now. Those decisions will shape the UK’s position as a global research leader, so it’s essential that as negotiations progress, scientists are continually given the reassurance they need.

32. If we are to maintain our ability to conduct world class research and protect the needs of patients, it is vital that the following areas are prioritised in the upcoming negotiations:

33. People and talent – The status of EU nationals in the UK must be urgently clarified. Uncertainty about the status of research and healthcare professionals in the UK is damaging the UK’s reputation and attractiveness as a place to do research. A recent survey[9] of BHF-funded researchers found that almost half were now more likely to look for career opportunities outside of the UK, rising to 80% among non-UK EU nationals.

34. After Brexit, we need a simple immigration system that recognises the global nature of research and supports our thriving life science sector. The system must aid the retention, access and movement of those who lead, undertake and support research and innovation including researchers, skilled technicians and healthcare professionals.

35. Funding and collaboration – We were pleased to see the Government state it would like to ‘explore forging a more ambitious and close partnership with the EU than any yet agreed between the EU and a non-EU country’. In particular, it is encouraging to see a commitment to explore participation in future research and innovation framework programmes.

36. While the BHF does not receive funding from the EU, The European Commission is the largest external source of follow-on funding for BHF researchers, making up around a quarter of total external further funding[10]. Removing such a significant source of funding environment would evidently restrict the scale and ambition of research conducted in the UK.

37. EU funding schemes are also important for encouraging collaborative research (many applications require participation from organisations across at least three countries). We believe that the most effective way for researchers in the UK to retain access to collaborative funding opportunities, is through continued UK participation in future EU research programmes, including FP9.

38. Regulatory frameworks for research, medicines and devices – We welcome the Government’s pledge that the UK will look to continue to work closely with the European Medicines Agency to ensure patients have access to medicines as soon as they are available. The needs of patients should be paramount and there should be no negative impact on patients’ ability to access cutting edge treatments.

39. High quality research requires a strong regulatory framework. Much of the regulation which governs UK research currently comes from the EU. Particularly relevant for the BHF are:

• European Clinical Trials Regulation (not yet formally adopted)
• European Data Protection Regulation (coming into force from May 2018)
• European Directive Concerning the Use of Animals in Research

40. While there may be an opportunity to adjust some regulations so that they fully support the needs of the UK research community, it is crucial that UK and EU research legislation remains broadly aligned and compatible to prevent the creation of regulatory hurdles and enable future collaborations. The UK research community should therefore be consulted and involved in discussions on the future of research regulation.

About the British Heart Foundation

The BHF is the UK’s leading heart charity. We are working to achieve our vision of a world in which people do not die prematurely or suffer from cardiovascular disease. Thanks to modern treatments built on our research, huge progress has been made in saving lives. Most babies born today with heart defects survive and seven out of ten people survive a heart attack. However, heart and circulatory disease still kills one in four people and affects 7 million people in the UK, so there is so much more to do.

The BHF is the largest independent funder of cardiovascular research and the third largest charitable funder of medical research in the UK. Each year, thanks to the generosity of our supporters, we are able to fund around £100 million of new research across the UK and in all four nations. Our funding portfolio extends from laboratory science to clinical trials and population studies. We fund people from PhDs to professors as well as investing in large programme and project grants.

14 September 2017