IMPLEMENTING POLICY AND SYSTEM CHANGE TO MAKE OFFERING CLINICAL RESEARCH A STANDARD PART OF DEMENTIA CARE PATHWAYS IN THE UNITED KINGDOM

In 2012 the UK Prime Minister launched the ‘Challenge on Dementia’ to stimulate policy and system change to deliver “major improvements in dementia care and research.” The Challenge noted “people with dementia and their carers are not routinely offered the opportunity to participate in high-quality research”. The National Institute for Health Research (NIHR) National Director for Dementia Research was tasked with delivering the necessary policy and system change to create a nationally consistent system to enable them to do so, should they wish. Since 2012 the NIHR has delivered a programme of activities aimed at influencing policy and delivering system change to ensure people with dementia and their carers are routinely offered the opportunity to participate in research as part of normal care practice. A central tenet across both strands has been wide stakeholder engagement, with people affected by dementia and the main third sector organisations at the heart of the programme alongside researchers, clinicians and the key public sector organisations. The policy strand has incrementally increased the scope and prominence of research in relevant policy, from inclusion of research in the Royal College memory clinic accreditation process, to inclusion of research recruitment objectives in the government's Dementia 2020 strategy and in NHS England's ‘Dementia: Good care planning guidance for commissioners’; and subsequently a target for the proportion of people with dementia being offered research opportunities in the Dementia 2020 policy implementation plan. Alongside, the system change strand has involved the design and development of a new national public engagement and research recruitment service that was launched in 2015: Join Dementia Research, the implementation of which is supported by national and regional change programmes, and the NHS Innovation Accelerator Programme. In three years 32,000 people have registered with the service, 80% of whom say it has increased their awareness of research. It is promoted in an estimated 70% of memory services. It has had a direct and indirect impact on research activity with over 30,000 people recruited to dementia studies each year since the service launched, up from 13,000 a year in the preceding 4 years.