Patient Activation Measures: UK Renal Registry case study

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The UK Renal Registry (UKRR) is part of the Renal Association, a not-for-profit organisation registered with the Charity Commission. It collects, analyses and reports on data from 71 adult and 13 paediatric renal centres in the UK, as mandated by the NHS National Service Specification, and provides access to a clinical database that can be used in research.

The UKRR PAM is being used with patients with chronic kidney disease (CKD) (stage 3b and above) as an outcome measure as part of the ‘Valuing Individuals: Transforming Participation in Chronic Kidney Disease’ work programme. This work commenced in March 2015 and will run until March 2017. The aim of using the PAM is to measure activation levels as part of wider work on person-centred care, building towards a better understanding of care pathways for long-term conditions.