Looking into a crystal ball for clinical research and development By Dr Cat Ball, Senior Policy Manager, AMRC Published: 17 December 2018 No one can predict the future. Apart from perhaps Mystic Meg (for those of you who remember her) or Paul the psychic octopus of world cup-predicting fame. I’m certainly no clairvoyant, but when it comes to the future of clinical research and development, we have a few ideas here at AMRC. Every patient is a research patient In the future, we hope that a step change in patient and public involvement will lead to more research studies that recruit to target and deliver more patient benefits. We know that high-quality ethical research is best achieved when patients help identify research questions that matter to them and help design studies that are attractive to take part in with outcome measures that are relevant to patients. Many of AMRC’s members are leading the way in involving patients at every stage of the research process. Patient data has transformed health and medical research In the future, it’s vital that our current failure to record, link and share data in the NHS is rectified. This failure is jeopardising our ability to conduct world-class research and, importantly, the care and safety of patients. Using patient data in research has the power to revolutionise the way we approach developing new research strategies and treatments with the potential to bring transformative outcomes for patients. Much of the research funded by charities uses patient data; it enables researchers to identify the causes and cures of diseases and ill-health, as well as potential improvements to care. We know that patients are willing to share their data for research purposes, a recent survey from the Brain Tumour Charity found that 97% of patients would consent to sharing their data, even if it meant they could be personally identifiable. AI technology is changing the research landscape The application of AI technology has huge potential to transform the lives of patients when combined with the rich datasets held within the NHS. Charities also hold valuable data about patients which can underpin and ensure the utility of new technologies. We’re very much in the foothills of the application of this technology at the moment but, looking ahead, it’s clear that the full potential will only be realised if technologies are introduced in a way that people can trust. It’s vital that genuine and meaningful public and patient engagement surrounds the development of these technologies. Charities are drivers of the digital heath revolution As well as a prediction for the future, we can already see that charities are helping to drive the digital health revolution. From apps to the utilisation of machine learning technologies, medical research charities are taking leading roles in developing new digital health initiatives by facilitating patient participation as they are developed. To name just a few examples from AMRC’s members - Autistica worked with Deutsche Bank to develop an app to help cope with anxiety and Orthopaedic Research UK is working in collaboration with the myrecovery app to develop new ways to aid recovery from orthopaedic surgery. A clinical research landscape that supports those with multiple long-term conditions Real-world studies with real people will be essential if we are to address the major health burdens that our society faces in the future. People are living 10 years longer on average than when the NHS formed 70 years ago and there is a greater likelihood of having more than one condition – by 2035 the numbers of older people with four or more diseases is set to double. Research traditionally focuses on single conditions and studies purposefully exclude people who have multiple long-term conditions as well as those who are older. Looking ahead, a new approach is needed where research and care focus on the whole individual, not just the separate conditions that someone may present with. Collaborations centred around patient need are key features of our research landscape Finally, we believe that charity-brokered collaborations centred around patient need will be standard practice in our research landscape in the future. AMRC’s members are ‘honest brokers’. They can bring together university researchers, funders, SMEs, regulators, patients and others to focus on patient priorities and areas of unmet need. With many uncertainties in the road ahead – including some that not even Mystic Meg or a psychic octopus can help us with, like Brexit – it’s impossible to know exactly what the future will look like. But we do know that the UK’s medical research charity sector will be as passionate as ever about putting patients at the heart of pioneering medical research.