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  • Norsk tittel - G-I-N Public Toolkit: Patient and Public Involvement in Guidelines.
  • Engelsk tittel -
  • Versjon - 2
  • Status -
  • IS-nr -
  • ISBN -
  • DOI -
  • Revisjonsdato - 01.09.2015
  • Neste revisjon -
  • Publikasjonsdato - 01.08.2012
  • Utløpsdato -
  • Utgiver(e) - G-I-N PUBLIC Steering Committee
  • Redaktør -
  • Publikasjonstype - Veiledere
 

Authors: Jane Cowl,* Helen Tyrrell, Carol Sakala, Javier Gracia and Nancy Huang
*Corresponding author: Jane.Cowl@nice.org.uk

Aims of this chapter

This chapter describes ways to conduct public and targeted consultation during the development of clinical
guidelines. It aims to raise awareness of key issues to take into account when developing a consultation
strategy and related processes, including best practice principles and different methods to consider. Using
the typology of involvement described in Boivin et al1 the term ‘consultation’ refers to the process of
collecting information from patient and public stakeholders to inform guideline development and
implementation, as opposed to their ‘participation’ in exchanging information with other stakeholders, for
example, as members of a guideline development group.

This chapter focuses on the approach and experience of the UK’s National Institute for Health and Clinical
Excellence (NICE), while also drawing on examples from the Scottish Intercollegiate Guidelines Network
(SIGN), GuíaSalud in Spain and recommended best practices from guideline bodies in other countries. It
includes examples from our experience of how consultation has added value to the process and end
product. 

The UK and Spanish models are provided for illustrative purposes only and are not meant to be prescriptive:
‘local’ circumstances and the level of support and resources available will influence the type of model
adopted. This chapter concludes with key messages in a summary of tips and best practice principles.

Reasons for consultation 

Several key guideline organisations and other major bodies such as the USA’s Institute of Medicine
recommend the use of public and targeted consultation to inform the development of clinical guidelines.
They concur that there is value in exposing draft guidelines to a wider audience, including all groups that
have an interest in the implementation or outcomes of guidelines. There are also strong grounds for
consulting patient and public stakeholders from the beginning of the guideline development process; for
example, to ensure that issues important to patients and their families or carers are taken into account in
the scoping of topics and questions for the guideline to address and in subsequent steps moving forward. In
addition, targeted consultation with patients and/or the public can add value when important gaps are
identified in the evidence related to their views and experiences.

In its criteria for accrediting producers of clinical guidelines for National Health Service (NHS) Evidence NICE2
refers to relevant patient and public groups being included in consultations, and notes that best practice
requires a range of patient and public involvement activities in the development of guidelines. The
accreditation criteria are based on the Appraisal of Guidelines for Research and Evaluation (AGREE)
instrument which was developed to assess the quality of clinical practice guidelines.3
Other key bodies promote public and targeted consultation. For example, in Australia, public consultation on
the draft guideline (including relevant professional and patient/consumer organisations) is a requirement for  approval of clinical guidelines by the National Health and Medical Research Council,4 and in the USA the Institute of Medicine5 promotes this practice in their standards for guideline development. Some guideline developers have documented their approach to consultation as part of a wider strategy or programme of patient and public involvement in guideline development, for example, NICE, 6,7 SIGN, 8,9 and the Spanish national guideline development programme called GuíaSalud.10,11 In summary, there are many good reasons for public and targeted consultation during the development of clinical guidelines. These include:

  • Helping to ensure that issues important to patients and the public are appropriately taken into account from the beginning of the guideline project and reflected in the final product, thereby complementing the contribution of patient and public members on a guideline development group
  • Supplementing gaps in the evidence or obtaining a wider source of patient/public experiences and views than can be provided by patient and public members on a guideline development group
  • Securing an understanding of public perception of the acceptability and relevance of the guideline in the ‘local’ context, for example, the National Health Service in Scotland
  • Improving the wording and presentation of the guideline (for example, ensuring that the wording is respectful and the recommendations promote partnership between patient and clinician)
  • Helping to ensure the guideline is relevant and acceptable to patients and the public, and to specific groups within the patient population, including those who are unrepresented or ‘seldom heard’
  • Paving the way for patient/public support for the final guideline and receptivity to its uptake and dissemination, and in general
  • Enhancing the legitimacy of the development process and the end product from a public perspective.

Ways of conducting consultation

Consultations may be open to the public and/or targeted to relevant patient/public groups and other stakeholders. They may be conducted remotely (e.g. online), in meetings or in workshops, or a combination of these. Less commonly, consultation may also take the form of research with patients and/or the public (using methods such as surveys, focus groups and interviews), when participants are not expected to represent the views of other people, but to characterise their own views and experiences. Whichever approach is taken, consultation adds significantly to the time and resource requirements of guideline development and should be factored in at the outset. In most consultation processes—such as feedback on draft scoping documents and draft guidelines—patient/public consultation can occur simultaneously with professional consultation.

Both open and targeted consultation methods have their advantages as outlined in the following table.

Open or targeted consultation?