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The Transforming Participation in Chronic Kidney Disease (TP-CKD) Programme is working with renal units across England to look at ways in which health professionals and patients can work together to better enable the self-management of chronic kidney disease.
With new research out just this month concluding that, despite two decades of policy promises, NHS services still do not give people adequate control of their own health and care, this work is timely. The TP-CKD programme is working towards closure in December 2017, and over the coming months will be drawing together the learning gained over the last three years in an evaluation report which will look at both qualitative and quantitative measures. The programme is working with the University of Hertfordshire to develop an evaluation model that will involve renal units, patients, healthcare professionals and members of the work-steams who have been involved in the programme to date. We hope that as many voices as possible will contribute to this part of the report through in-depth interviews, completion of questionnaires and focus groups. At the same time members of the measurement work-stream and the UK Renal Registry will develop a quantitative evaluation model and analyse the data that we have received from the surveys.
2018 and beyond, the UK Renal Registry hopes to continue to collect person centred measures and develop plans around how these can be embedded within patient care.
Using data to change practice
The TP-CKD programme first focused on the feasibility of measuring a patient’s skill, knowledge and confidence in managing their health (known as ‘activation’) alongside symptom burden, to gain a more holistic picture of a person’s current control over their health. With the UK Renal Registry coordinating collection, the programme has now collected this data on over 3,700 kidney patients using paper questionnaires across 14 renal units. Results have been returned to the renal units as well as patients via patient view.
The programme’s person centred care facilitator, Rachel Gair, is now working in partnership with the renal units involved to look at ways in which health care professionals with patients can use this data in practice. Examples so far from across the programme include staff enrolment onto a Patient Activation E-Learning programme, using peer support alongside patient activation, as well as communication workshops with staff. With upcoming TP-CKD workshops at Nottingham, Derby, Birmingham and Sheffield the programme is looking forward to facilitating more interventions to enable person centred approaches in care; and supporting units in interpreting their patient’s data over the coming months.