Research programmes at the Cambridge Institute of Public Health focus on common chronic disorders. Currently under the spotlight is dementia and a major new project that will underpin improved prevention, screening and patient care.
Crucial to the success of the registry is allowing the population to become part of the enterprise... as true partners in the process of public health research and action."—Professor Carol Brayne
Today, more than 600,000 people in England are affected by dementia - a progressive and terminal brain disease that, as more people live longer, is predicted to affect twice this number within 30 years. It’s an escalating public health problem that the Department of Health has stated is a national priority.
However, according to a report published by the National Audit Office in 2010, there is too little joined-up working between health and social care services for people with dementia, a situation echoed by Professor Carol Brayne, Director of the Cambridge Institute of Public Health (CIPH): "What patients and families tell us is that there are problems with fragmentation of care for dementia, with not enough information about what’s available and what pattern of services works best."
Brayne and colleagues within CIPH (see panel), together with collaborators from Cambridgeshire and Peterborough NHS Foundation Trusts and partners from the Cambridge University Health Partnership, realised that a new approach was needed to underpin the delivery of improved dementia care, as well as to further research on dementia screening, treatment and prevention. Their aim is to build a dementia registry to support both service and research.
Evidence road map
"Until now, not enough of the research evidence cited in dementia guidelines has been generated on the populations to whom the treatments will be applied - the older old, aged 80 and above," explained Brayne. "This could be resolved by an up-to-date dementia registry based on the systematic collection of all data relating to individual patients with dementia combined with a road map of evidence, both qualitative and quantitative, right the way through from prevention to palliative care."
Physicians and public health specialists need accurate and up-to-date data to compare therapies, reduce risks and set standards, and in recent decades registries have become a key part for monitoring illnesses such as cancer, infectious disease and diabetes. Because registries contain information on patient history, diagnosis, treatment and social care, they are valuable not only for making important public health decisions about treatment and co-ordinated care but also for identifying gaps that require further research.
The complex process of designing and delivering a registry for dementia in Cambridgeshire and Peterborough has now begun. It aims to be the first truly population-based register nationwide to link all services in the area. Developing a registry is not without its challenges, as Brayne, who chairs the steering committee, explained: "There are very important data governance and social and ethical issues to address, including the label itself - not everybody who might meet the criteria for dementia would wish to call themselves demented. It’s a very emotive label and there’s a lot of fear. One of things we want to do is help with destigmatisation."
After a scoping study commissioned by the Collaboration for Leadership in Applied Health Research and Care for Cambridgeshire and Peterborough (CLAHRC CP), work began last year to develop the system and the first phase of the registry is under way, working with primary and secondary care.
Two phases that will sit alongside each other have been planned: one (now in active development) is a care pathway registry to link data directly from GPs relating to various stages in the patients’ journey through inpatients, outpatients, community care and related services; and another will create a research registry of people with dementia who are suitable, and would welcome the opportunity, to participate in research. Both phases have the backing of the National Institute for Health Research (NIHR) Dementias and Neurodegenerative Diseases Research Network, which is also actively supporting the development of registers nationwide, and now endorsed through the Prime Minister’s Challenge.
"The previous lack of a dementia register across the Cambridgeshire and Peterborough areas has meant there has been limited information for planning services," added Brayne. "Going forward, stakeholders will be able to monitor trends and plan ahead for the ageing population. We hope this initiative will also improve safety and efficacy of day-to-day clinical management for people with dementia, improve outcomes and maximise efficiency."
Data for health
The dementia registry is one element of a more ambitious vision: to integrate data with health care planning and research for a whole range of common chronic diseases "so that doctors have the right information at the right level in front of them, and researchers have the appropriate permission to recruit patients for research studies."