2004 Conference

From their inception, Guideline Development Groups (GDGs) commissioned by the National Institute for Clinical Excellence (NICE) have included, as a minimum, two patient and/or carer members. This paper presents the findings of a project to evaluate the methods and impact of patient and carer involvement in the first clinical guidelines developed on behalf of NICE.

The aim of the project was to:

  • determine areas of good practice
  • recognise aspects of the process which could be improved
  • identify what impact the patients and carers had on both the process and the products.

The patient and carer members and the Chairs from 20 GDGs were interviewed at the end of the 18 month guideline development process.

This paper will discuss both quantitative and qualitative information from the interviewees’ observations on:

  • their experience of the process as a whole
  • the methods used to develop the guidelines
  • the support and training available
  • the patient/carer members’ interactions with the Chairs and other group members
  • the contributions that the patient/carer members were able to make
  • their views on the final products, including the version of the guideline specifically designed for patients and members of the public

We will be offering some suggestions for successful patient/carer involvement which emerged from this project.


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