How will we know that change is an improvement?
The DAYLife core data-set is a simple set of measures all kidney units taking part in DAYLife collect and share, in order to monitor real-time home dialysis usage and variation during the project. Most kidney teams gather these data locally on a routinely basis.
The DAYLife core data-set, collected monthly:
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Total number of people on dialysis
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Total number of people on home haemodialysis
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Total number of people on peritoneal dialysis
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Number of people moving from home haemodialysis or peritoneal dialysis (and reason) that month
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Number of people starting home haemodialysis or peritoneal dialysis that month
Measuring the success of changes using the core data-set may be difficult, as it can be hard to identify the root cause for shifts in the data amongst many possible influences. A further level of suggested measures, specific to interventions is recommended. This measurement should be decided on locally, and used to monitor the outcome of changes made to the patient pathway (for example pre-treatment choice, training, treatment transitions or support and retention).
Key learning from DAYLife so far
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Use existing data sources to measure the home dialysis pathway during the project research phase, in order to inform priorities
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Measure 'just enough' additional outcomes on top of the DAYLife core data-set depending on project focus, and review locally in order to evidence interventions
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Involve an IT expert to support with data collection and reporting and reduce manual data processes.
