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Patient involvement in national clinical guidelines: the NICE guidelines on referral for suspected cancer

Richard Baker*

Department of Health Sciences, University of Leicester, UK

Corresponding Author:
Professor Richard Baker
Head of Department
De-partment of Health Sciences
University of Leicester, Leicester General Hospital
Gwendolen Road, Leicester LE5 4PW, UK
Tel: +44 (0)116 258 4873
Fax: +44 (0)116 258 4982
Email: [email protected]

Received date: 20 July 2005; Accepted date: 9 August 2005

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There is a general agreement that guidelines should assist decision making by patients. However, there is less agreement on how this can be achieved. In this article, the recently published guidelines on referral for suspected cancer are used to illustrate some of the approaches adopted by the National Institute for Health and Clinical Excellence (NICE) in England Wales. It is argued that considerable progress has been made in recent years on ways of promoting patient involvement through guidelines,although some problems remain to be resolved before genuine involvement is achieved.


guidelines, NICE, patient involvement


Guidelines have been defined as ‘systematically devel-oped statements to assist practitioner and patient decision making’.[1] This definition has become widely accepted and has imposed on guideline developers the duty of producing guidelines that promote patient involvement, and perhaps even the concept of the patient as the source of control.[2] In the UK, consider-able progress has been made in methods of guideline development, first by the Scottish Intercollegiate Guide-line Network (SIGN) and more recently by the National Institute for Health and Clinical Excellence (NICE).[3,4] This article will focus on guidelines produced by NICE, which contain recommendations on the appropriate treatment and care of people with specific diseases and conditions within the NHS in England and Wales. They are based on best available evidence, but an extensive consultation process is involved in their development. This includes not only the deliberations of a guideline development group that is composed of professionals and representatives of patient and carer groups, but also external, national, open consultation with regis-tered stakeholders. The stakeholders include profes-sional, commercial, and patient and carer organisations. Each guideline takes up to two years to develop. NICE has established several national collaborating centres (NCCs) to help develop the clinical guidelines, and these are the NCCs for acute care, cancer, chronic conditions, mental health, nursing and supportive care, primary care, and women’s and children’s health. The guideline for referral for suspected cancer was developed by the NCC for primary care. Each guide-line is published in four versions. There is the full guideline which contains all the recommendations plus details of the methods used and the underpinning evidence. There is also the NICE guideline, which presents the recommendations from the full version in a format focused on implementation for healthcare workers; this is supplemented by the quick reference guide which summarises the recommendations in a format useful for the end user. Finally, there is a version for the public that is written for people without spe-cialist medical knowledge. To date, 34 guidelines have been published by NICE and 40 are under development.

Guideline development

Patient involvement in guideline development is achieved in several ways. The first approach is to ensure wide consultation from the start. This involves agreement of the scope, following consultation with stakeholders who include patient organisations. Once the scope of the guideline has been confirmed, the guideline group is formed. Each guideline develop-ment group includes at least two representatives of patients and carers, and this was the case with the guideline on referral for suspected cancer. That guide-line group also included health professionals (general practitioners, a surgeon, public health physician, nurse, clinical psychologist and others), plus the technical team who service the group with evidence reviews and methodological support.

The role of the patient and carer representatives on the guideline group includes contributing their own experience and perspective to the deliberations of the group. They also have a wider role however, in that they present an opportunity for the health profes-sionals to talk within the group to non-clinical indi-viduals about the recommendations. Of course there is often an element of explanation in this, but there is also an element of learning on the part of the health professionals. Health professionals develop a better understanding of the patient perspective. Having observed this dialogue take place in guideline devel-opment groups, I am convinced that it is a critically important ingredient to producing guidelines that promote the involvement of patients in their care.

The recommendations

The impact of patient involvement in guideline de-velopment can be illustrated by the recommendations in the referral guidelines for suspected cancer. The recommendations for breast cancer are shown in Box 1.


Box 1: Breast cancer

The initial recommendations are general and include conveying optimism about the effectiveness of breast cancer treatments and survival, discussing the information and support needs of the patient, and encouraging all women aged over 50 years to be breast aware. Of course, the recommendations also include clear statements about when cancer should be suspected and the patient referred, but they go further in requiring the health professional to consider the concerns and needs of the patient.

The way in which these recommendations for the health professional are transformed into information for the patient with suspected cancer and their carers is shown by the abstract taken from the information for the public version of the referral for suspected cancer guidelines relating to breast cancer, and included in Box 2.3


Box 2: Breast cancer

The preparation of the information for patients from the guideline recommendations is undertaken by skilled editors. They consult with the patient representatives of the guideline group, with the aim of producing information that is readily understood. The information is published in a small booklet, and in the case of the referral guidelines for suspected cancer, the booklet is 55 pages long. In addition to repeating the recommendations in an understandable form, the information includes background information about the types of cancer and what the patient can expect from the GP. The underlying principle is that by providing more information, the patient, if they wish, can be more involved in decisions about their care

The proportion of patients who will refer to the information booklet is difficult to predict. Although the booklet is available from the NICE website, it may not be readily available at all times in all practices, and in any case a proportion of patients will not want to look at a booklet, want only selected information, not speak English, or have other problems in reading. Therefore, the booklet is only part of the process of patient involvement that flows from guidelines.

Support and information needs

Another way in which the completed guidelines seek to promote patient involvement is the inclusion of a set of recommendations specifically concerned with the support and information needs for people with suspected cancer (Box 3).


Box 3: Support and information needs of people with suspected cancer

The underlying research evidence on the support and information needs of people who are being referred with suspected cancer is very limited. The guideline group drew on the limited evidence available and their own expertise to produce the recommendations in-cluded in Box 3. These are recommendations for health professionals, and they centre on the involve-ment of the patient, taking account of their needs, circumstances, and pReferences. Patients need infor-mation in order to be involved. Support also plays a part in promoting involvement through ensuring that the professional understands the patient’s circum-stances and pReferences. It is very likely that pro-grammes to implement the guidelines will focus on the recommendations about the symptoms and signs that indicate the need for urgent referral under the two week wait scheme. However, the guideline group would encourage primary care organisations who are promoting implementation of the guidelines to pay attention to the support and information needs recommendations as well. These flow from the in-volvement of patients in the development of the guideline and therefore deserve the close attention of health professionals.


The Bristol Inquiry’s first recommendation was that health professionals in the NHS should provide care on the basis of partnership with patients (Box 4).[6] This recommendation is echoed in The NHS Plan of 2000 for services to be built around the needs and prefer-ences of patients.[7] Through involvement of patients in guideline development groups and the formal consul-tation processes that take place during guideline development, supported by the inclusion of rec-ommendations specifically concerned with patients’ pReferences and needs, and the provision of guidelines in a format specifically for patients, NICE guidelines are contributing to the creation of an NHS culture which values patient involvement. Of course, there is more to be done. Methods of direct consultation with patients rather than through the intermediary of patients’ groups would be a useful next step. Thought should also be given to more effective ways of getting information to patients or potential patients about the content of guidelines. This is far from simple, but over a period of time it may be possible to present infor-mation in formats that make the education of the public by NICE an accepted feature of care in England and Wales. Furthermore, guidelines are but one of many activities to promote patient involvement. The creation of the health service that is genuinely respon-sive, and designed in accordance with patients’ pref-erences and needs, will take a considerable time.


Box 4: Partnership: involving patients (Bristol Inquiry6)


Conflicts of Interest


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