Study Groups

Transforming Participation in Chronic Kidney Disease Programme

Project lead:
Karen Thomas, Head of Programmes,

Project contacts:
Melanie Dillon, Programmes Development Officer - Website Lead,
Sarah Evans, Programme Co-ordinator,
Rachel Gair, Person Centred Care Facilitator,
James McCann, Programmes Support Officer - Events Lead,
Julie Slevin, Programmes Development Officer - Social Media Lead,
Annie Taylor, Communications Consultant,

Project website(s):
Think Kidneys

NHS England and the UK Renal Registry (UKRR) are working in partnership to support people with chronic kidney disease to build their knowledge, skills and confidence enabling an equal partnership to develop between the clinician and the individual living with a long term condition.

Supporting patients to self-manage as effectively as possible is a fundamental component of person-centred care, a lead feature of NHS England’s Five Year Forward View, a key priority for the Health Foundation, and a central feature of manifestos and policy guidance from leading patient groups.

Current ways of working, in the main, do not support such an approach. However, if we are going to change the way a patient is involved in their own care, we need to have a good way of supporting both the patient and the clinical team with how to do this, and we need a way of measuring where people currently are so we can pitch the training and support at the right level.

The programme is attempting to answer 3 simple questions:

  1. Is it possible to routinely gather information about a patient’s level of knowledge, skill and confidence, quality of life and experience of healthcare measures using data collection methods?
  2. Does a patient with a high level of knowledge, skill and confidence have a better personal reported health and experience outcome than someone who does not understand how to self-manage their own care?
  3. Can we use various interventions such as peer support, supported self- management programmes, one to one support and coaching to improve a patient’s level of knowledge, skill and confidence to manage their own kidney health needs?

To help us gauge the level of knowledge, skill and confidence of patients, their experience of the service and also the outcomes that are important to them we intend to use the cited surveys listed above. Twenty-three renal units across England expressed an interest in participating in this exciting and innovative programme.

For further information on Transforming Participation in CKD programme visit the Think Kidneys website at: