Making a difference: Impact Report 2019 Medical research charities are committed to funding research that positively impacts people living with health conditions or diseases. For many charities, this is only made possible through public donations and so charities must let the public know how their money is being spent and what impact it is having. The pathway to impact is rarely linear. Instead, it often involves many different funders and research teams over a long period of time. This cumulative nature of impact makes it challenging to track in an effective way. AMRC is helping a number of our members use an online tool called Researchfish that allows them to collect data on the outcomes of their research funding over time. Collecting data in this consistent way allows us to pool data together from many different charities and perform an in-depth cross-sector analysis of the outcomes of the research funded by our members. This report follows on from our initial 2017 impact report, incorporating two more years of data and new stories of how charity-funded research has impacted patients and society. The report is structured around the five areas of impact shown below. For a PDF version of this report please contact our Communications Officer, Leo. If you have any questions please contact our Research, Data and Impact Manager, Jocelyn. With thanks to the Medical Research Council, Researchfish, and participating charities. Home Intro & data set Impact areas Reflections Additional info & analysis 5) Developing the human capacity to do research Research can only take place if there are a sufficient number of trained and engaged researchers who are able to take on the work, and there are the right facilities and resources to allow research to progress. Supporting researchers is a vital part of ensuring that new concepts are developed into treatments for patients. Funders can assess how well they are developing this capacity by looking at three aspects: Career progression Awards and recognitions Use of facilities and resources Case study: Investing in leaders Case study: Warm perfusion of donated kidneys Key stats 31% of the awards led to 3,895 unique researchers moving into new positions 37% of the awards led to 10,900 unique awards and recognitions 9% of awards reported using 866 unique facilities or resources Career progression Many funders want to support the development of skilled researchers in their own disease area. Tracking where researchers move at the end of awards allows them to see how effective their career development programme is. Many of the staff that moved came from early career positions (26% were students and 44% were postdoctoral). 63% of these students and postdocs continued on in academia 16% of these students and postdocs moved into private industry 7% of these students and postdocs moved into healthcare Where the researchers moved: 71% took positions within the UK 12% took positions in countries across Europe 6% took positions in the US Overall, 90% continued in careers related to research. Awards and recognitions Collecting information about the awards and recognition received by researchers allows funders to assess the long-term success of the researchers they fund. Awards and recognition can stimulate the career of a researcher, increasing the profile of their research. 37% of awards led to 10,900 unique awards and recognitions Types of awards and recognitions: 44% were invited to give a key note lecture 12% were given a research prize 10% were given a prestigious position at an external body Use of facilities and resources Researchers need to be able to access high quality facilities to enable them to carry out their research. For funders that support these facilities, it is important to be able to evidence that they are being used. 9% of awards reported using 866 unique facilities or resources Types of facilities and resources used: NIHR Clinical Research Networks Diamond Light Synchotron Brain banks and other tissues banks Imaging/development laboratories Case study: Investing in leaders Early career support from Epilepsy Research UK helped Dr. Rebecca Bromley establish herself as an expert in her field, enabling her to influence guidance on prescription medicine for women with epilepsy. Exposure of a baby to certain prescribed medications in the womb can cause birth defects and negatively impact brain development, leading to poor cognitive and social outcomes for the child. Over the past decade, researcher Dr. Rebecca Bromley and colleagues have investigated the effect of taking antiepileptic drugs during pregnancy on children’s health. After receiving her PhD in 2009, early career support from Epilepsy Research UK enabled Dr. Bromley to further extend her earlier research to investigate outcomes in children exposed to various types of antiepileptic medications and this work formed part of her doctorate in clinical psychology. Following completion of her Clinical Psychology training she secured a prestigious National Institute of Health Research postdoctoral fellowship in 2013 and gained further support from Epilepsy Research UK. This was to undertake research with Dr Rachel Charlton at the University of Bath, investigating the optimal methods to assess child development within the context of medication exposure. Dr. Bromley quickly became a leader in her field and her work formed part of a growing body of research showing that foetal exposure to the antiepileptic drug sodium valproate can pose a substantial risk to development. Research has now shown that if sodium valproate is taken during pregnancy, up to 4 in 10 babies are at risk of developmental disorders and roughly 1 in 10 are at risk of birth defects. Over the past five years Dr. Bromley has given evidence about these risks to various government and regulatory bodies including the European Medicines Agency (EMA) reviews in 2014 and 2017. Following recommendations from the EMA after the evidence presented by Dr. Bromley and other experts in the field, the MHRA issued new guidance on sodium valproate prescriptions in 2018. The guidance states that sodium valproate can no longer be prescribed to women of childbearing age unless they are on a pregnancy prevention plan (PPP). This new regulation will be key to preventing unnecessary risk to babies of women with epilepsy and other conditions for which this drug is prescribed, like bipolar disorder and migraines. Dr Bromley continues working on these issues and last year obtained further Epilepsy Research UK funding to investigate the potential relationship between exposure to seizures in the womb and later child outcomes. She is also now working as part of the EU funded ConcePTION study which aims to improve current systems through which the potential impacts associated with medication use in pregnancy and/or breastfeeding are investigated and disseminated to both patients and healthcare professionals. Case study: Warm perfusion of donated kidneys Professor Nicholson developed a pioneering technique called warm perfusion that revives, repairs, tests and primes donor kidneys before transplant to maximise the chance of success. Eighty percent of the people on the transplant waiting list need a kidney and due to a shortage of viable kidneys, 5 people die each week waiting for this vital organ. Even those who do receive a kidney often experience issues because of the kidney’s performance or acceptance by the body. Kidney Research UK invested more than £850,000 of funding to enable Professor Mike Nicholson to develop and test a method called normothermic (‘warm’) perfusion. This method involves flushing the donated kidney with oxygenated blood prior to transplantation, which revives the kidney, repairs damage and primes it with anti-inflammatory agents and other drugs. At the same time this provides the opportunity to test the kidney’s function and make sure there is the best chance of success. So far 138 patients have been recruited across four centres, in a phase II clinical trial. A small study using the technique has also led to the successful transplantation of nine kidneys, previously declined by all UK transplant centres. Professor Nicholson’s team have been recognised for their pioneering research with awards and prizes from several national organisations including the British Journal of Surgery, the Royal Society of Medicine, the Royal College of Surgeons of England and the British Transplantation Society. The House of Commons congratulated Professor Nicholson for his positive impact on kidney patients in the UK through an Early Day Motion signed by 33 MPs across parties, specifically noting that this work was made possible by funding from Kidney Research UK. This novel technique has the potential to increase the number and quality of donor kidneys and improve outcomes for people with kidney disease. In the future this method could be applied to the transplantation of other vital organs like the liver.