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In assessing themselves against the high impact change model and defining the changes to be made, integrated care systems can define a clear list of the data to be collected and used to track and measure progress.
Most stakeholders involved in developing the high impact change model agree that the lack of meaningful, accurate and accessible data on people living with dementia and delirium in their population is a key issue for ICSs. The lack of data on how they perform in managing the care of people living with dementia and delirium impedes insights into what is needed to improve care.
It is also said to deem people living with dementia ‘invisible’ to the ICS or place and it is therefore critical to prioritise the development and use of meaningful data as a key enabler to the high impact change model. This impact on data quality also impacts the ability to perform meaningful demand and capacity analysis to be undertaken to help shape the requirement for sufficient care provision.
In assessing themselves against the high impact change model and defining the changes to be made, ICSs can define a clear list of the data to be collected and used to track and measure progress. This includes mapping of what data is already available, that can be pulled through, in order to reduce the data burden for the teams delivering care.
It is important to involve service users in defining what is important to measure and capture, leading to measures and insights that reflect local priorities and the user. The choice of language used in forming data descriptors is important in creating a person-centred approach that is sensitised to what matters to people with dementia and/or delirium. (For example, measuring ‘number of days away from home’ instead of ‘days with no criteria to reside).
Improving the use of data
Some further opportunities and principles to guide the improved use of data are as follows:
- Work to align health and social care data to track people with dementia recognising that data held in acute hospitals and in social care does not necessarily align, in other words, people with dementia are not readily identified unless it is the primary reason for commissioning a social care package.
- ICSs can use the promotion of local population health data amongst staff to increase awareness of the prevalence of dementia and delirium. This helps to raise the profile of dementia and delirium and give weight to key initiatives. This could also provide an opportunity to look at the number of people identified vs the number predicted by the prevalence data to provide an insight into whether people are being identified.
- Prioritise data to be collected based on the known or suspected hotspots or blind spots in the care of people with dementia and delirium locally. Involve local teams in collecting the data on the population, service performance and outcomes. This can inform areas for improvement and support the development of an outcomes framework that teams then hold accountability for. ICSs could consider how they build sustained metrics at Board, Department and Team level.
- Use existing data and data captured through care plans (i.e. through coding) more proactively as they enable knowledge of where people living with dementia are in the local area. For example, use existing data in Primary Care to proactively identify and screen people living with dementia to pre-empt crisis.
- Inconsistent or inaccurate coding can hamper the process of extracting accurate insights from data on dementia/delirium. Carry out work to standardise this and embed universal, standard coding definitions and practice in the ICS.
Some examples of areas of data capture and the insights afforded by collecting the data are as follows:
Supporting resources
The National Audit for Dementia outlines a national approach to the review of data and provides insights into performance against key metrics relevant to dementia and delirium services.