Background

NHS Diabetes and Diabetes UK worked in partnership to deliver a project that would aim to create a model of good practice for effectively involving service users, their carers and parents in the strategic development of diabetes services. The User Involvement in Local Diabetes Care Project applied and tested approaches to involving people living with diabetes (users and carers) to influence local diabetes care in three NHS organisations: NHS Lincolnshire, NHS Hammersmith & Fulham and the north Mersey Diabetes Network. The project work combined strategies developed by a previous project group (at the National Diabetes Support Team, the forerunner to NHS Diabetes and Diabetes UK) with new approaches and a degree of flexibility to meet local needs.

Aim of the evaluation

An independent evaluation of the project was carried out by TwoCan Associates.

Their role was to follow the progress of the project and to report on the lessons learnt. The evaluation therefore took the form of a summative evaluation (drawing conclusions at the end of the project), rather than a formative evaluation. The evaluation was not used to influence the processes of involvement or the progress of the work. 

Methodology

There were three stages to the evaluation that evolved in parallel with the project (table below).

Evaluation stage	Dates	Methods used
Stage 1	May – July 2010	A review of relevant documents. Semi-structured face-to-face interviews with the three local co-ordinators and the Diabetes UK project manager. Interviews with senior staff at two of the sites and a PPI lead at one of the sites face-to-face or by phone. Group interviews with service users at their user group meetings at each of the three sites.
Stage 2	Oct – Nov 2010	A review of relevant documents, and telephone interviews with: the local coordinators at each of the pilot sites; two service users who were members of the service user group and of the relevant decision-making group at each site. The local coordinators identified which service users to interview, based on their availability and willingness to take part; senior staff at two of the sites, and the Diabetes UK Project Manager.
Stage 3	Feb -Mar 2011	Telephone interviews with senior staff at two of the sites. Group interviews with service users at their user group meetings at each of the three sites. A group interview with all three local coordinators. Face-to-face interview with the Diabetes UK project manager.

A similar approach to the interviews was adopted at all stages of the evaluation. All the interviews were recorded with people’s permission and then transcribed by the interviewer. Each transcript was analysed by at least two members of the evaluation team to agree the main themes and the main points for the reports. TwoCan used a framework analysis, developing a framework that was based on their knowledge of user involvement, the aims of the evaluation and the issues emerging in the interviews. They produced draft reports and then asked all the interviewees to check they were happy with the way they had been quoted prior to circulating the report more widely. The first two reports were for internal use only and have not been made publicly available.

Outcomes

This project has now been completed and a new set of dedicated resources has been created to support effective involvement at all levels of diabetes service design, commissioning and delivery.

Outputs

The resources and approaches developed during the course of this project can be found at: www.diabetes.org.uk/Professionals/Making-Involvement-Happen/  and for more information on the project, read the 

• Executive Summary: Evaluation of the User Involvement in Local Diabetes Care project (Word 80KB)
• Full Report: Evaluation of the User Involvement in Local Diabetes Care project (Word 282KB)
  
• Key Messages: Evaluation of the User Involvement in Local Diabetes Care project (Word 61KB)

Case Studies

• Evaluation case study: Achievements of the Hammersmith and Fulham Diabetes Service User Group (PDF 160KB)
• Evaluation case study: Achievements of the North Mersey Diabetes Action Group (PDF 155KB)
• Evaluation case study: Achievements of the Lincolnshire Diabetes User and Carer Group (PDF 156KB)

Further information

• NHS Diabetes user involvement page
• TwoCan Associates
• Diabetes UK: Making Involvement Happen