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- BLOG - Access to secure data during the Covid-19 pandemic - a model for the future?
- Covid-19 and Care Homes: Advances in Administrative Data Research during the pandemic
- DATA INSIGHTS -Deprivation and informal care at the end of life
- BLOG - Reflections on engaging with children & young people about data
- NEWS - Innovative new residential linkage tool launched
- BLOG SERIES - Dramatic increase in deaths at home- No.4
- DATA INSIGHTS - Youth Movements, Social Mobility and Health Inequalities
- NEWS - New report warns of deepening poverty crisis for Scottish families
- New report on Infants Born into Care in Scotland
- Spotlight on Dr Elizabeth Lemmon
- Spotlight on Jan Savinc
- BLOG - Covid-19 fines in Scotland: What we know so far
- BLOG - The value of social science and administrative data research in Scotland: how we are helping respond to COVID-19
- NEWS - Joining together with Research Data Scotland to co-host existing public panel on data
- DATA INSIGHTS - Exploring illegal drug consignments in Scotland
- DATA INSIGHTS -Linking two administrative data sets about looked after children
- NEWS - ADR UK grants 20 PhD studentship opportunities focused on quantitative research using linked administrative data
- NEWS – ADR Scotland data ambassadors launched
- Spotlight on Peter Christen
- The importance of administrative data
- Virtual Conference - Data Linkage: Information to Impact
- An Introduction to Data Science for Administrative Data Research course - March 2023
- BLOG SERIES - Dramatic increase in deaths at home - No.7
- BLOG SERIES - Dramatic increase in deaths at home
- BLOG SERIES - Dramatic increase in deaths at home- No.3
- DATA INSIGHTS - Investigating the effects of class composition and class size on pupils’ attainment in Scottish primary schools
- NEWS - New opportunity to join ADR Scotland’s Public Panel
- BLOG - Engaging the public through our public panel
- BLOG - Exploring the potential of synthetic data
- Children’s Health in Care in Scotland (CHiCS)
- DATA INSIGHTS - Automatic Coding of Occupations: Methods to create the Scottish Historic Population Database (SHPD)
- DATA INSIGHTS - Selective schools: do they improve health?
- DATA INSIGHTS - Were people who died at home less likely to attend hospital at the end of life during the Covid pandemic?
- EVENT - Active Travel: New Data, New Insights
- EVENT - Holyrood Evidence Week: Doing Data Better for Policy and Public Good
- EVENT - Unlocking criminal justice data in Scotland: Findings from Data First
- IPDLN Conference - Data linkage research: informing policy and practice
- NEWS - Making nursing data available to inform policy
- NEWS - New report on The Impact of Covid-19 on Children’s Care Journeys in Scotland: An Analysis of the Administrative Data on 'Looked After' Children
- NEWS - Updated report on Infants Born into Care in Scotland
- Scout and Guide participation boosts later life health
- BLOG - Geospatial Ambitions
- BLOG - Taking historical death records and developing a database for future analysis
- BLOG - Unlocking criminal justice data
- DATA INSIGHTS - Community mortality due to Covid-19
- DATA INSIGHTS - What makes people more likely to cycle to work?
- Future-proofing investment into administrative data research announced in Scotland
- NEWS - Understanding the dynamics of the nursing workforce: the potential of routinely collected data
- Spotlight on Joanna Soraghan
- Spotlight on Katherine Falconer
- Why misconceptions about population data can lead to bad outcomes
- ADR Scotland publishes its strategy for 2022-2026
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- BLOG - Review of the recent DWP Areas of Research Interest Workshop
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- BLOG: Working together to make a difference with data
- DATA INSIGHTS - Homelessness duration in Scotland: how long does rehousing take?
- DATA INSIGHTS - Occupation and COVID-19 deaths: Scotland in a comparative perspective
- DATA INSIGHTS -The health and economic benefits of active commuting in Scotland
- EVENT - ADR UK Conference 2023
- EVENT - RSE The secret world of data
- NEWS - New comic on children's rights and data
- NEWS - Report published on our children’s engagement pilot study
- NEWS - When did fines issued by the police for breaking Covid rules peak?
- Scotland’s portfolios: Research and Statistical Data - building a new approach to thematic data linkage
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- Spotlight on Dr Evan Williams
- Spotlight on Fernando Pantoja
- Spotlight on Laurie Berrie
- ADR Scotland Winter Partnership Session - **internal event**
- BLOG - AGEING AND HOMELESSNESS IN SCOTLAND
- BLOG - Can we use linked administrative data to identify social disadvantage?
- BLOG - Commuting and its impact on health
- BLOG - The Dynamics of the Nursing Workforce in the UK: Using data to support our nurses
- BLOG: Growing up in kinship care
- Congratulations to Alastair McAlpine, the new Chief Statistician for Scottish Government
- DATA INSIGHTS - Analysing a season of death and excess mortality in Scotland’s past
- EVENT - ADR UK Virtual Half Day event
- EVENT - HDR UK Conference: Data for global health and society
- EVENT - Introduction to Data Science for Administrative Data Research course (IDS-ADR)
- Event - Public data for public good: towards better understanding children's lives
- NEWS - ADR Scotland's first flagship dataset
- NEWS - Data research initiative secures £90 m funding extension
- NEWS: Our role supporting the new Covid-19 research data service in Scotland
- Spotlight on Gina Anghelescu
- Spotlight on Michelle K Jamieson
- Webinar - An Introduction to Looked-After Children Dataset
- ADR Scotland Away Day (**for staff only**)
- BLOG - An Inside Job: Using Criminology, Police Data and a Lot of Nouse
- BLOG - Improving justice data to promote data justice in Scotland
- BLOG - Location of death in 2020: a changing trend from hospitals to homes
- BLOG - Reflecting on the ADR UK Conference: Insights from our new PhD Researchers
- BLOG - Seeking feedback on Research Data Scotland’s core principles via our public panel
- BLOG - What skills, training and support are required by those wishing a career as an administrative data researcher?
- BLOG No. 9 - Final blog in this 'deaths at home' series
- BLOG SERIES - Dramatic increase in deaths at home - No. 6
- BLOG SERIES - Dramatic increase in deaths at home - No.8
- BLOG SERIES - Dramatic increase in deaths at home- No.5
- BLOG: 5 things I've learnt about working with policymakers...
- BLOG: Automating Coding for Large Historical Datasets
- BLOG: COVID-19- How increased deaths at home impact the carer community
- DATA INSIGHTS -Postal deliveries of drugs in Scotland
- EVENT - 'Getting things done with data in government'
- EVENT - Linking public sector data for research: an ADR UK showcase event
- EVENT Seminar - Administrative data for social policy research: potential and pitfalls
- NEWS - ADR Scotland launches new podcast series
- NEWS - Additional funding for Understanding Children’s Lives and Outcomes
- NEWS - Engaging children and young people
- NEWS: Police use of Fixed Penalty Notices under the Covid-19 regulations in Scotland: A new data report highlights links with deprivation and inequality
- NEWS: Police use of the new Covid-19 powers: Using administrative data to analyse and evaluate practice
- Research Data Scotland - New user forum
- Spotlight on Dr Patricio Troncoso
- Spotlight on Renata Samulnik
- Summary of ADR Scotland Winter Partnership session
- Directorship of the International Population Data Linkage Network (IPDLN) for 2021-22.
- BLOG: In the light of experience: InterRAI and the final thousand days of life
- Multiple health conditions and social care
- NEWS - Susan McVie elected as Fellow of the Academy of Social Sciences
- SCADR relocates to the Bayes Centre
- EVENT: Four day introduction to using administrative data for social and health research
- BLOG: The value of administrative data: DALYs and the Scottish Burden of Disease study
- BLOG: Where to start with parliamentary and policy engagement
- EVENT - International Conference on Administrative Data Research, Cardiff
- EVENT - Using data to realise the potential of the 'Last 1000 days'
- EVENT: TalkingData: ADR Scotland mini-summit
- EVENT: “Let’s use data to save time, money and lives”: ADR Scotland partners gather for mini-summit
- EVENTS: ADR Scotland researchers present at international conference in Cardiff
BLOG - In the light of experience: InterRAI and the final 1,000 days of life
In this blog Dr Iain Atherton (co-director for the Scottish Centre for Administrative Data Research) shares his reflections on our recent seminar, and the potential data can hold for improving the final years of life.
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How to enable future health and social care services to provide person centred care often feels an impossible ask. Earlier this month, Professor Matthew Parsons gave hope that the impossible is possible in one of our centre's Autumn seminars.
For me, his description of the InterRAI initiative in New Zealand gave a realistic and achievable image for what might be done in Scotland. This initiative, based on the ideas of Brian Dolan, demonstrates how data can provide information genuinely useful to practitioners, their patients, and so to policy makers. As a nurse, and now as an academic who is one of the co-directors of the Scottish Centre for Administrative Data Research, I think he provided a practical and realistic vision of what can be done in Scotland.
So what has the New Zealand work involved?
- An assessment that is given on anyone aged 65 years or over who has an illness or disability lasting six months or more.
- An algorithm then provides indication if the person involved is almost certainly in their final thousand days of life
Indication that the person is in his or her thousand days of life is highly reliable and robust.
So why is this indication helpful?
Flagging that a person is almost certainly in their final thousand days enables informed conversations between practitioner - be it a medic, nurse, or other trusted person - and the person involved. That conversation is not the difficult one associated with very late indication of impending death. Matthew highlighted that most will not be surprised other than that they might have so long left!
Decisions on improving those final days can then be so much better informed. Plans can be made so as to avoid treatments that might use much of that remaining time or have unpleasant side effects. Focus can switch from acute care to giving value to those last days.
The extent to which the use of InterRAI in this innovative manner improves lives and reduces unnecessary or even harmful care has yet to be established. Matthew and his colleagues are adding InterRAI data to New Zealand’s impressive Integrated Data Infrastructure. Resulting analysis will be give clear indication as to the impact of the initiative and the resulting informed decisions made by patients themselves.
As a registered nurse, I do look back to those whose care I have been privileged to be involved. I wonder whether they would have decided to go through the surgery or accept the treatment suggested had they realised their proximity to the end of their lives, if the discussions between patients and surgeons, consultants or others would have been very different had we had a resource such as enabled in New Zealand. A resource that could enable those precious final days to be given to quality of life rather than hospitalisation or painful treatments.
The ideas build on what is already happening in Scotland including realistic medicine and anticipatory care planning. It recognises the preciousness of those final days and provides readily understandable information to facilitate informed decision making.
I think it is worth serious consideration.
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This blog was written as part of the work of the Scottish Centre for Administrative Data Research, within the ADR Scotland partnership, funded by UKRI/ESRC.
This article was published on 25 Sep 2019