Charities can ensure the Life Sciences Vision reflects patient priorities By Nicola Perrin, Director of Policy and Public Affairs and Catriona Manville, Head of Policy, AMRC Published: 2 August 2021 The government’s Life Sciences Vision, published on 6 July, sets out an ambitious plan to help the UK become a global science superpower. Covid-19 has shown the importance of science, and made research more visible than ever. Now is the time to invest, to build on existing capabilities and support capacity and infrastructure that will ensure the long-term sustainability of research. The level of cross-sector collaboration to address the pandemic has been remarkable, and it is reassuring that the vision acknowledges the life science ecosystem’s reliance on a plurality of partners. Together with government and industry, medical research charities are key funders of research in universities and the NHS. Despite the pandemic’s effect on fundraising, charities still invested £1.7 billion in research in 2020, equalling government spending on medical research through the Medical Research Council and the National Institute for Health Research. Charities help focus attention on areas of high need that otherwise receive too little investment. Collaborations are essential -partnerships with other organisations account for one in every seven grants awarded by members of the Association of Medical Research Charities. This helps to bring the voice of patients to research, a contribution that the vision rightly recognises. The vision’s emphasis on prioritising the recovery of clinical research is welcome. At the height of the pandemic, 70 percent of trials funded by AMRC members were on hold. That figure is now down to 11 per cent. But, while more trials are restarting, recruitment for non-Covid research is still too low. Despite the best efforts of staff in the NHS and National Institute for Health Research, trials are struggling to recruit patients. In April 2019, about 20,000 people were recruited to trials. This April the figure for non-Covid research was half that. Covid-19 continuing to take up resources, there is a need to improve capacity in the NHS workforce to build a more resilient research ecosystem. Achieving the ambition of making the UK the best place in the world to conduct trials will require significant investment in peopleand infrastructure. The lessons learnt from Covid-19 have created a real understanding of the need to embed clinical research across the NHS, and to ensure that it is streamlined, efficient and innovative. To achieve this, the Health and Care Bill progressing through parliament needs a greater emphasis on research. Staff need to be not only supported, but encouraged to participate in research. Only then will research that has the potential to deliver real breakthroughs in patient care be possible. The vision recognises the importance of making better use of NHS patient data to underpin innovation. The cradle-to-grave medical records of 58 million people are a unique resource with huge potential to improve both care and research, to understand more about the causes of disease and to develop new treatments. For example, access to high quality, real-world evidence has been a crucial pillar of decisions about the safety of Covid vaccines. But the government must be wary of assuming unquestioning public support for greater use of data. The unsuccessful launch of the General Practice Data for Planning and Research project, now postponed, has undermined public trust in theuse and sharing of health data. There is work to do to raise public awareness and improve transparency to build confidence that health data will only be used responsibly. Charities can help to share best practice to support effective engagement, once the safeguards are in place. Charities will also be central to solving the health challenges set out in the vision. Public donations are particularly targeted to dementia, cancer, cardiovascular disease, asthma and mental health, and fund a huge amount of research in these areas. AMRC charities spend roughly twice as much as government and other public funders on cancer and cardiovascular research, and about a quarter of the total government and charity budget for mental health research. Charity research is driven by patient priorities. Patients help shape their research strategies, meaning charities put their money where it will make the most difference to patients. This accelerates the development of new treatments, the uptake of innovation and the delivery of benefits to patients. Over the past 12 years, research funded by AMRC charities has led to at least 550 new medical products. By bringing patients’ voices to the table, charities can help to deliver this positive and bold vision for UK life sciences, and improve health for everyone. This commentary originally appeared in Research Fortnight on 28 July 2021.