Home > Recruitment and support > The role of patient and public members

Research has found that a barrier to involving patients and the public in guideline development can occur when the role and required skills, experience and knowledge have not been clearly outlined (Armstrong et al. 2017b, Carroll et al. 2017). At the planning stage of a new guideline, developers need to have a clear understanding of the role requirements and expectations of the patient and public members. This helps developers carefully plan the offer of support, training and any additional resources needed, and ensures that only suitable members are recruited. The information will also help patient and public members to understand what is required of them, including the time commitment, which enables better engagement because they will be able to plan their work. This section will explore the factors that guideline developers should consider during the planning phase, including:

  • the role and tasks of patient and public members
  • the type and number of members
  • gaining appropriate representation
  • the required skills and experience.

The role and tasks of patient and public members

Developers should be clear of the purpose and rationale for patient and public involvement because the role will influence the tasks, skills, and the qualities that developers will need to recruit for. The role is defined as their function in a group, including being an equal partner in decision making during guideline development.

Knaapen and Lehoux (2016) defined 3 models that might be useful to consider when developing roles based on the tasks to be achieved: consumerist, democratic, and expert. A consumerist model emphasises an individual’s right to have autonomy in making choices in healthcare decision making and that healthcare improves when tailored to patients’ needs and preferences. This model applies if the task is to identify patient preferences and develop decision aids. A democratic model refers to the ‘rights of citizens (and taxpayers) to democratic decision making on a policy or collective level’ (Knaapen and Lehoux 2016). This model applies if the tasks are to develop policy documents that influence the design or redesign of healthcare services. An expert model emphasises the patient and public’s experiences and knowledge of a condition, treatment, and quality-of-life outcomes. So, it offers a different kind of expertise to that of health professionals and is useful when producing guidance.

Although the models might be a useful starting point to consider roles and tasks, they can be contradictory because patient and public members are sometimes required to perform multiple tasks. For example, formulating recommendations, synthesising knowledge, revising drafts and, occasionally, strategic decision making such as deciding committee membership, outlining the scope, and producing decision aids (Légaré et al. 2011). The type and range of tasks will influence the number and type of patient and public members to recruit.

It is also important to ensure that the patient and public members’ role, ideally, spans every stage of the development process, including the scoping stage. This can help prevent patient and public members disagreeing with the topic scope and disengaging from the guideline group (van Wersch et al. 2001). When it is not feasible to involve members early on, or at all stages of the development process, an alternative is to invite additional representatives, to attend 1 meeting or contribute to a consultation (see the chapter on how to conduct targeted and public consultation).

Role and tasks in practice

NICE in England involves patient and public members throughout the guideline development process. They have the same role and tasks as health and social care professionals. Tasks include:

  • agreeing the review questions and protocol
  • assessing and interpreting the evidence
  • producing recommendations
  • identifying relevant stakeholders for consultation
  • contributing to draft documents
  • producing information for the public.

RNAO involves patients and members of the public in similar ways to NICE. For some topics, NICE recruits patients or carers early on to help develop the guideline scope, as part of a smaller scoping group, and possibly also to support the development of patient-decision aids. When patients or public members cannot be involved in all stages of the guideline development, SIGN in Scotland invites additional representatives, living with the condition, to specific meetings. Patient and public members might also be recruited for different types of roles and tasks. NICE in England, ÄZQ in Germany, and RNAO in Canada all involve patients and the public when developing quality standards or indicators, based on guidelines, which includes the rating and assessment process.

The type and number of patient or public members

What type of patient or public member should we recruit?

The guideline topic and role and tasks will influence the type of members to include. The members can include patients, carers, parents or advocates from patient organisations. A carer or parent might be important to include when relatives are affected by the condition, or they have an integral role in caring for the person with the condition (for example, dementia). Parents or carers can be recruited if it is difficult to involve a patient living with the condition, such as young children (for more information, see the section on overcoming barriers to involving those who are seldom heard, in this chapter). Developers may also consider an employee or volunteer from a patient organisation. Even if this person does not have personal experience of the condition, they can provide a broad perspective on the condition and population. It is important to note that a patient, carer or advocate from an organisation will have different perspectives and it can be helpful to include all types of perspectives.

How many patient or public members should we recruit?

NICE advocates that at least 2 patient or public members should be recruited to any guideline group, who might be patients, parents, carers or advocates from patient organisations. More members could be recruited if the guideline covers multiple issues, a complex condition, or requires multiple roles and tasks. The advantages of this are that it:

  • broadens the experiences of the group and ensures different aspects of the guideline are covered from the patient or public member’s perspective
  • can build confidence, provide social support and empower patients to contribute
  • reduces feelings of isolation, which is a known barrier to patient engagement
  • provides peers to work with other patient and public members.

Consideration can be given to socio-demographic representation, such as the age range, which is likely to influence how many patients and public members are needed. For example, for the NICE guideline on babies, children and young people’s experience of healthcare that is in development (2020), NICE recruited6 members (out of 16), including 2 parents and 4 young people aged between 18 and 25, with experience of different aspects of healthcare.

Representing compared with representative

It is important to recruit patient and public members who represent the condition or issues of those affected by the guideline. A common barrier to effective involvement is the difficulty in recruiting people to the guideline group who can broadly represent the guideline without heavily focusing on their own individual subjective experience or agenda (Carroll et al. 2017, Légaré et al. 2011). The individuals should be able to represent the commonalities and different aspects of the condition in question. However, patient and public members cannot be representative of everyone or all the socio-demographic characteristics (for example, age, gender, ethnicity) that make up the population of concern. Therefore, developers need to consider multiple patient and public members, who might be patients, parents, carers or members of a patient organisation, to achieve such broad representation. Additional approaches to involvement should be considered to address gaps in representation (see the section on supporting individual patient and public members in this chapter).

Guideline developers and patient organisations report that a barrier to achieving sufficient representation on guideline groups is the lack of interest from patient and public members to get involved in guideline development. Solutions can be to engage other patient organisations who are associated with the health topic of interest. Alternatively, engage organisations who focus on a different condition that produces similar symptoms or experiences to the condition of interest. For example, if the guideline topic covers blood pressure then consider engaging organisations associated with coronary heart disease.

The experience, knowledge and skills required

After the role, type and number of patient and public members have been defined, developers should consider creating plain language information outlining the role and person specification. An important attribute of patients and public members is their experience of the condition and this should be included in the role specification. Exclude people who do not have experience but have only an intellectual or professional interest in the condition. Outline additional skills required, such as communication and team working skills. Ideally, recruit people who will actively contribute to group discussions and be able to represent the views of a wider patient or public group, which could be gained through membership of a support group or patient organisation. Depending on the roles and tasks of the guideline group, developers might need to recruit for different types of skills or they might need to recruit multiple people to achieve such diversity. The role and person specification should explain such skill requirements, what the work entails, the time commitment, expenses or payment arrangements, and what support or training is available. The SIGN 100 handbook for patient and carer representatives provides an example of the roles and skills required to be involved in guideline development (2019) and an example role description from NICE can be found in resouce file 1.

The role specification should not disqualify people who may be able make a highly valued contribution to the group. For example, asking for academic levels of attainment or research experience can present a barrier to achieving genuine lay representation (Boivin et al. 2009). At RNAO and NICE, persons with lived experience are not required to submit a curriculum vitae when applying but are required to describe their experience relevant to the topic. Developers could consider that certain knowledge or skills can be gained ‘on the job’ with adequate co-learning with project teams (for example, research terminology) or through formal training. Some courses exist online, either free or with a small charge (see resource file 2 for a list of training resources). A greater emphasis should be placed on ‘soft’ skills, experience or knowledge that cannot be learned in the role, such as having contact with other people living with the relevant condition and being able to reflect on their experiences.

To recruit 2 or more patient or public members with a range of experience, knowledge and skills, the following factors could be considered:

  • relevant experience of the condition
  • an understanding of the issues that matter to people with that condition
  • the ability to reflect and advocate on the experiences of a wide group of people living with the condition gained from contact with people through patient organisations, forums or self-help groups
  • the time and commitment to attend the meetings and complete associated work
  • good communication and teamworking skills
  • a commitment to maintain confidentiality
  • declaration of interests, such as receiving funds from pharmaceutical companies.