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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
- 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 - The value of social science and administrative data research in Scotland: how we are helping respond to COVID-19
- DATA INSIGHTS - Exploring illegal drug consignments in Scotland
- DATA INSIGHTS -Linking two administrative data sets about looked after children
- NEWS – ADR Scotland data ambassadors launched
- The importance of administrative data
- Virtual Conference - Data Linkage: Information to Impact
- BLOG SERIES - Dramatic increase in deaths at home - No.7
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- 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
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- Future-proofing investment into administrative data research announced in Scotland
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- ADR Scotland publishes its strategy for 2022-2026
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- 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
- IPDLN Conference - Data linkage research: informing policy and practice
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- ADR Scotland Winter Partnership Session - **internal event**
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- BLOG - The Dynamics of the Nursing Workforce in the UK: Using data to support our nurses
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- DATA INSIGHTS - Analysing a season of death and excess mortality in Scotland’s past
- EVENT - ADR UK Virtual Half Day event
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- 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
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- Research Data Scotland - New user forum
- Spotlight on Dr Patricio Troncoso
- 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
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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