Type

Conference Proceedings

Authors

Kate Irving
Teresa Burke
Suzanne Hughes
Louise Hopper

Subjects

Medicine & Nursing

Topics
health evidence based policy dementia epidemiology patient registries focus groups information systems data collection

The feasibility of a national dementia register for Ireland (2016)

Abstract Background: There is an acknowledged lack of information about dementia in Ireland, including very poor coding of dementia across all care settings. Yet with dementia prevalence set to increase as our population ages, there is an urgent need to gather valid epidemiological data that provides accurate and reliable national estimates of current and future dementia prevalence, and facilitates the development of robust and effective dementia health and social policy (Cahill, O’Shea, & Pierce, 2012). This study, commissioned as part of the Alzheimer Society of Ireland evidence-based policy series, examined the feasibility of developing a national dementia register for Ireland. Methods: A rapid review of national and international patient registry literature was undertaken to identify registry functions, underlying design and process models, and best-practice guidelines for their development. A ‘landscape analysis’ identified the legal, ethical, clinical, technology, and financial issues relevant to the creation of an Irish dementia register. Following ethical approval, we conducted two focus groups with people with dementia and twenty-one expert stakeholder interviews with clinicians and with representatives from research, health, and social care organisations in Ireland and the UK, existing Irish patient registries, and international dementia registries. Discussions followed an agreed structure, were audio-recorded, transcribed, and analysed using inductive content analysis. Results: Common themes emerged from the literature and stakeholder discussions with regard to: registry function; benefits and risks; data collection; data management; governance; legislation; barriers and facilitators; Irish complexities; and best-practice. Conclusions: The results provide an evidence-base on which to progress the issue of improved recording structures for dementia in Ireland. Given the strategic approach the government is now taking to address research and information systems as part of the 2014 National Dementia Strategy, it is opportune to examine the potential for a framework to collect information in a reliable, accurate, valid, complete, and timely way
Collections Ireland -> Dublin City University -> Publication Type = Conference or Workshop Item
Ireland -> Dublin City University -> Subject = Medical Sciences: Health
Ireland -> Dublin City University -> Subject = Medical Sciences: Epidemiology
Ireland -> Dublin City University -> Status = Published
Ireland -> Dublin City University -> DCU Faculties and Centres = DCU Faculties and Schools: Faculty of Science and Health: School of Nursing and Human Sciences

Full list of authors on original publication

Kate Irving, Teresa Burke, Suzanne Hughes, Louise Hopper

Experts in our system

1
Kate Irving
Dublin City University
Total Publications: 66
 
2
Teresa Burke
Dublin City University
Total Publications: 22
 
3
Suzanne Hughes
Dublin City University
Total Publications: 5
 
4
Louise Hopper
Dublin City University
Total Publications: 34