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Dementia Analytics Research User Group

Better standards of health care mean that people are living longer. This also means that the number of people living with dementia is increasing. To offer effective support to people with dementia and their carers we need to know the number of people who are assessed for dementia, how they access a diagnosis, what services are offered before and after assessment and how accessible and helpful these services are. To answer these and the many other important questions associated with a person’s journey with dementia we need to collect the appropriate data. The Dementia Analytics Research User Group (DARUG) was set up in March 2018 to enable commissioners, health professionals, researchers, academics, voluntary and community representatives, people living with dementia and carers to come together once a month to discuss and share information about dementia. Over time we have built a community of practice where collaborations have developed as a consequence of the shared interest and motivation to improve the quality of life for people living with dementia and their carers. A number of data analytics projects, aimed at improving our understanding of dementia in Northern Ireland have received funding under the Dementia eHealth and Data Analytics Pathfinder Programme. This programme is part funded by the Northern Ireland Executive Office, Atlantic Philanthropies and the Department of Health. The programme focuses on using data to enable better understanding of the needs of people with dementia and their carers to inform better services and support and help with planning to meet predicted future needs. The call for funding solicited proposals consistent with the aims of the Northern Ireland Regional Dementia Care Pathway (Health and Social Care Northern Ireland, 2018) The 11 projects that have been successfully awarded funding through the eHealth and Data Analytics Dementia Pathfinder Programme are summarised below in the URL below: http://www.hscboard.hscni.net/our-work/ehealth-and-external-collaboration/darug/ https://view.pagetiger.com/DARUG/newsletter-june-2019 The DARUG programme implements agile methodology and the project leads update on progress at regular sprints. This enables feeback from the community and affords the opportunity to shape the future direction of the project. Personal and Public Involvement (PPI) was built into the process from the initial stages of the project proposal evaluation and there is regular ongoing PPI engagement to help to shape the direction of the project. The concept of DARUG has been overwhelmingly positive. In the first instance people vote with their feet and there has been consistent attendance and engagement from the group throughout the past 21 months. Some quotes from attendees about their experience with DARUG. “DARUG is unique. There is no other forum that has the range of disciplines and services coming together to discuss data in dementia. This range of ideas improves our knowledge and understanding of dementia data and what we can do with this data.” “PPI and the voice of people with dementia and carers shape DARUGs’ priorities and work.” The outcomes of the projects are now emerging and the results are being presented at local, national and international conferences, together with papers accepted and submitted for publication in peer reviewed journals.
Background
Geographical scope: 
Regional level
Region involved:
Countries involved:
Organisation
Organisation name: 
Digital Health & Care NI
Organisation address: 
Digital Health & Care NI, Health and Social Care Board Level 1, 12-22 Linenhall Street, Belfast, BT2 8BS...
Kind of organisation: 
Regional public authorities
Viability
Time for deployment: 
Less than a year
Preparation of implementation: 
As part of the preparation we identified key stakeholders that could be part of DARUG including healthcare commissioners, health professionals, researchers, academics, voluntary and community representatives, people living with dementia and carers. Terms of reference for the group was set up to...
Investment per citizen / service user / patient: 
No available calculation.
Cost calculation: 
N/A
Evidence of practice: 
Apparent evidence. Evidence is based on qualitative success stories
Evidence creation: 
A formal evaluation process is being carried out as part of the overall evaluation of the Dementia eHealth and Data Analytics Pathfinder Programme and results will be presented end March 2020. Initial feedback from members have solicited the following comments: “DARUG is unique. There is no...
Maturity level: 
There is evidence that the practice is economically viable and brings benefits to the target group. Further research and development is needed in order to achieve market impact and for the practice to become routine use
Maturity level detalis: 
Building a successful community of practice for learning and exchange of knowledge on a common area of interest can be very beneficial but not always easy to achieve and sustain. The funding for data analytics dementia projects has been a catalyst to encourage interest in the first instance –...
Time of impact: 
Long term and sustainable impact – e.g. a long time after the pilot project ended and routine day-to-day operation began
Kind of impact: 
Better care integration (economic and societal)
Aspects time of impact: 
There are plans to draft up an annual workplan for DARUG group moving forward which will enable to results of the various data analytics projects to deliver impact and realise benefits to the planning, commissioning and delivery of dementia services across NI that will improve quality of care for...
Transferability level: 
Transferability has not been considered. The innovative practice has been developed on local/regional/national level and transferability has not been considered in a systematic way
Transferability details: 
DARUG as a model for developing a community of practice is being written up and the output of the overall evaluation will also inform the overall direction of the model. Opportunities for transferability is being considered.
Initiative
Type of Practice: 
Promising practice
Stakeholders concerned: 
Hospitals
Primary care centres
Specialised physicians
General practioners
Pharmacists
Nurses
Nursing homes
Informal caregivers
Private companies
Small-sized industry
Research centres
Academia
NGOs
Regional public authorities
Local public authorities
Advocacy organisations patients/users
Advocacy organisations physicians
Other, please specify
Health Informatics staff
Reach of initiative: 
100 - 249
Baseline information: 
• No forum exist to bring together multi-disciplinary group of individuals working in the field of health informatics and dementia. • No centralised dementia register • Very few dementia datasets available ...
Source of funding: 
Regional funding