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Overcoming barriers to involving those who are seldom heard

Throughout this chapter, we have highlighted several generic barriers and facilitators that guideline developers can take into account when recruiting and encouraging meaningful involvement of patient and public members in guideline development. These barriers and facilitators are summarised in table 2. Although these can apply to all patient and public members, including those who are seldom heard, there are specific barriers and facilitators to be considered when guideline developers cannot recruit patient and public members or when specific groups of people might have very specific support needs because of:

  • age, such as babies and children
  • circumstance, such as those living in prisons and other secure settings, or
  • condition, such as people with learning (developmental) disabilities, or severe and complex mental or physical health conditions.

Table 2 Summary of generic barriers and facilitators for recruiting and promoting effective patient and public involvement in guideline development

Developer unclear of recruitment strategy in terms of the number or type of patient or public members to recruit to achieve genuine representationConsider open recruitment as opposed to nomination methods, including where to advertise. Recruit through patient organisations and social media (for example, Twitter, Facebook and other online patient or support forums). Recruit at least 2 patient or public members who might be patients, carers, parents or advocates from patient organisations. The organisations should represent a breadth of views and experiences associated with the guideline and other important socio-demographic (for example, age range) factors. Re-advertise the position if there are no suitable applicants. Consider other involvement methods.
Developer or patient or public member unclear of their role in guideline developmentPlan the role and associated tasks early in the planning phase. Develop and advertise a role description and person specification. Consider patient demographics and characteristics. Provide induction materials and discuss the role requirements before the first group meeting.
Scheduling and planning, such as meetings clashing with personal commitmentsEnsure meeting dates are planned and shared with all guideline group members in advance of the first meeting. This will allow patient and public members to plan and arrange any necessary time off work or childcare arrangement, for example. Any changes to meeting dates must be communicated and agreed with all group members and communicated as soon as possible.
Lack of relevance of the scope to patient and public membersInvolve patient or public members early in guideline development and invite them to smaller scoping groups. If this is not feasible, then involve a patient advocate from a patient organisation to represent the views of patient and public members in scoping discussions.
Gaining meaningful involvement or avoiding tokenismInterview applicants to ensure they have the right skills and experience and recruit early so they can contribute to the topic prioritisation or scope development stage. For meaningful engagement, include members in strategic decision making (for example, in developing the scope), development of decision aids, or implementation strategies.
Patient and public member not respected, not seen as equal, or feeling devaluedMake certain that the group’s chair understands group dynamics and ensures equal power balance, including a right to vote to reach consensus and providing feedback on patient contributions. Include a specific slot for patient and public members to provide input during discussions. Encourage relationship building between patient and public members on the same group or with health professionals to build allies.
Achieving a breadth of perspectiveRecruit members according to their personal experience of guideline topic, wider understanding of patient issues from patient networks or support groups, and soft skills (for example, communication skills).
Recruitment can be resource intensive or costlyUse nomination as a recruitment strategy through patient organisations, if possible. Use social media to advertise.
Lack of methodological expertise, skills or knowledge related to guideline developmentDeliver or signpost to relevant training (for example, research methods and critical appraisal skills) and consider ongoing co-learning (for example, presentations in meetings) or regular feedback on performance.
Lack of confidence to speak up in a large group of expertsConsider including hints and tips in induction materials, training, and also in catch-up calls with a patient and public involvement specialist, or key support person. Peer support from other patient and public members from previous or different guideline groups can help.
Supporting people with a range of practical support needsAssess support needs early in the recruitment phase and continue to re-assess throughout guideline development. Make reasonable adjustments and offer practical and informal support through. During development, conduct regular check-ins (by email, phone or video call) to identify issues or to assess ongoing support needs.
Lacking peer supportRecruit more than 1 patient and public member. Offer a ‘buddy’ or a chance to meet or talk to someone from a previous or different guideline group to discuss the role and any issues at the beginning and throughout guideline development.
Limited funds to re-imburse membersConsider vouchers (gift in kind), offer free training to upskill members to improve their curriculum vitae. If possible, pay travel expenses or offer virtual participation in meetings (for example, using video-conferences or tele-conferences).

The remainder of the chapter will discuss alternative approaches to involvement and specific considerations for different groups who are seldom heard, such as children or people with learning disabilities.

Alternative approaches

Specific groups of people might not be able to be full members of the guideline development group (for example, children or people with advanced dementia). In addition to involving parents, carers and advocates, there are alternative approaches to involving people with the condition or from the affected population. These include a reference group, additional sources of data on patient and public views, patient expert testimony, consultation using research methods.

Reference groups

A reference group in this context, is a group of people who use the relevant services or experience a particular condition. They can help the guideline group identify patients’ perspectives and priorities at key stages of guideline development. Reference groups have the advantage of generating a wider range of patient and carer views by including people with different experiences of the condition, treatment and care, or people from a specific socio-demographic background. For example, for the NICE guideline on child abuse and neglect (NG76; 2017), the developer commissioned an independent charity to recruit and facilitate a reference group to inform the guideline group’s deliberations and development of recommendations (Fielding et al. 2018). If considering involving a reference group, guideline developers should carefully plan the work including:

  • the objectives
  • involvement methods
  • time and costs
  • travel arrangements and incentives or reward for participation
  • demographics and other characteristics or experiences of the group
  • ethical issues, such as safeguarding
  • methods for presenting findings to the guideline development group.

The work of the reference group should be facilitated by people with expertise in facilitation and a track record in working with the group of interest.

Additional sources of data on patient and public views

In addition to using peer-reviewed literature, guideline developers may find relevant information on patient and public views and experiences in surveys conducted by stakeholder organisations. SIGN, in Scotland will contact relevant patient organisations and charities before starting the development of a guideline (SIGN, 2019). They are asked for their views on the important issues that they think the guideline should focus on. Their input on these issues could be based on data gathered through surveys or telephone helpline experience.

Patient and the public views and experiences can also be found on patient forums or patient-focused websites. For example, a UK-based reputable website, HealthTalk, covers many health conditions or groups, such as young people. It is informed by the Health Experiences Research Group at Oxford University’s Department of Primary Care. The team uses rigorous qualitative research methods to capture the full range of patients’ experiences associated with each health issue, condition, or intervention. Similar websites exist in other countries (for further information, see the section on consulting patient and public members using online engagement methods in the chapter on how to conduct public and targeted consultation).

Patient and public expert testimony

When there are gaps in the patient and public evidence, an alternative option is getting such evidence from the expert testimony of people in the affected population (in person, in writing or by video). Such expert testimony may be sought one or more times during guideline development because the need for expert testimony may only become apparent later in the process. It is important to support the individual providing the testimony. Support should include giving them information about the guideline group and what information is required, and preparing them for questions they may receive. Stakeholder organisations may also be able to support people providing a testimony. At NICE there is no minimum age for people providing expert testimony, but if they are under 16 years, or a vulnerable adult, they must be accompanied by an appropriate adult with responsibility for their welfare. When children or vulnerable adults contribute evidence to meetings, the testimony might need to be given through a video-recording or in a closed, confidential session if meetings are usually held in public.

Consultation using research methods

When important gaps in the evidence are unlikely to be filled through consultation with stakeholder organisations or using any of the above approaches, some guideline developers may consider consulting the affected population using research techniques. This is an exceptional option requiring additional resources. Types of methods and when to use research methods for consultation have been covered in detail in the chapter on how to conduct public and targeted consultation.

Involving people who are seldom heard in guideline development

Developers are likely to produce guidelines for a range of topics where the barriers to involvement can be greater for certain people. This section considers 3 groups of people: children and young people, people with learning disabilities, and people with severe and complex mental health conditions.

Children and young people

The UN Convention on the Rights of the Child (UNICEF 2016) enshrines the rights of children to be involved in decisions that affect their lives and to be heard. In the UK, health researchers, policy makers and services have increasingly engaged children and young people in matters that affect their health and wellbeing. Qualitative research indicates that children can provide their views, including those who are less articulate because of age, ability or culture. It also suggests that most children are acutely aware of the way in which they are treated, and their perceptions do not mirror those of adults (Doorbar et al. 1999). However, guideline developers find involving children and young people difficult and have several questions concerning when and how to involve children and young people (Schalkers et al. 2017). Some strategies for addressing common questions follow.

When should children be included in guideline development?

There is consensus that developers should seek the views of children and young people when the guideline specifically looks at a condition that affects this group or when the treatment or disease affects children differently compared with adults (Schalkers et al. 2017). It is likely that their views and experiences will differ from adults around symptoms, treatments, side effects, recovery, and care. An addendum to guidance for adults could suffice if the experience of the disease for children does not differ that much from adults.

Developers may need to prioritise involving children and young people in certain guidelines over others. Schalkers et al (2017) list 14 criteria for supporting this decision, with the top 3 criteria being when:

  • there is a clear expected health benefit for children
  • professionals identify that guidance is needed for children
  • there is difference of opinion between professionals around the treatment of children.

The criteria that are least important in deciding whether to involve children are when the disease has high expected healthcare costs, the lack of availability of scientific evidence, and when the focus is on pharmacological treatments.

What is the minimum age of children for involvement in guideline development?

Developers can be concerned about the ability and competence of a child or young person to be able to understand, contribute to and engage in decision making. The UN Convention on the Rights of the Child defines a child as a person under 18 years (UNICEF 2016), as does UK child protection legislation. In the UK, a child is deemed competent to decide about their treatment without parental or guardian consent from 16 years. This is the minimum age for a young person to join a NICE guideline development group without being accompanied by an appropriate adult. However, mental capacity should be considered. Some young people aged 16 and over might have a specific vulnerability, such as a learning (developmental) disability, and would need to be accompanied by an appropriate adult. But a child under 16 years, who does not have a specific vulnerability, might demonstrate sufficient mental capacity, known as Gillick competence, and be able to contribute to decision making.

Qualitative health research has demonstrated that children as young as 6 can share their views and provide useful information (Gibson 2007). However, young children would be unable to participate in a guideline development group and additional approaches to elicit their views would be needed, such as focus groups or reference groups. There may be country-specific age thresholds and so developers should consider local legislation and policies on children and young people, and their mental capacity.

Should a parent or primary caregiver provide the views of children?

One debate that could arise is whether parents or caregivers should provide the views of the child younger than 16 years. At NICE, an appropriate adult would likely need to be involved in a guideline group if the child is under 16 years. Although NICE acknowledges that parents and carers can bring valuable insights, they should not be regarded as a proxy for children. If guideline developers have the available resources, it is useful to work with a specialist external organisation, or a stakeholder organisation, with expertise and access to appropriate networks to elicit views from children. 

How do you recruit children and young people?

Strategies outlined in this chapter also apply here, particularly working with relevant patient organisations, charities or other voluntary and community organisations for children and young people. Advertising on social media can also be useful for parents to identify the involvement opportunity for themselves and their child.

How do you involve children and young people and what approaches can be used to elicit their views?

NICE has developed a systematic approach, outlined in the NICE manual for developing guidelines, to ensuring that the views of children and young people are included in guideline development for relevant topics (NICE 2020b). The approach also includes involving parents or other family members. There is much research in the social sciences on how to elicit the views from people of different age groups, and it highlights the need for age-appropriate techniques (see Gibson 2007). But it is likely that for working with young and very young children, specialist input and training from an external organisation will be needed. Some general strategies to consider when involving children and young people aged 16 to 25 years are:

  • Involve children and young people in a meaningful way, setting out clear objectives and working with sensitivity and flexibility, especially if the topic is sensitive.
  • Consider measures for protecting the safety and welfare of children, including following local ‘safeguarding’ policies. 
  • Make adaptations, such as providing age-appropriate training, ensuring the chair asks specific questions or provides opportunities to contribute during meetings, and allowing regular breaks.

Children and young people were involved in the development of SIGN’s guideline on epilepsies in children and young people: investigative procedures and management. Two young people were full members of the guideline development group. Young people, associated with Epilepsy Scotland, engaged in an interactive session to discuss the issues identified from a patient-focused literature search. They explored what the additional priorities were for them and whether there were any other issues that the guideline group should consider. For further information, the Royal College of Paediatrics and Child Health provides guidance on how to involve children and young people in committees (2018; see the section on further reading.

People with learning disabilities

People with learning disabilities and their carers are increasingly being involved in guideline development groups (Caldwell et al. 2008). Although it is important to follow the guidance in the sections on the role of patient and public members, their recruitment, and supporting individual patient and public members, guideline developers must consider very specific reasonable adjustments to meetings and practical support to encourage meaningful involvement. Table 3 lists several considerations and adjustments that have been documented in the literature and implemented in NICE guidelines on learning disabilities (Caldwell et al. 2008; Karpusheff et al. 2020). There is no exhaustive list of strategies, but they can be categorised into accessibility of meetings, communication adjustments, environmental adjustments, financial support, and transportation.

Table 3 List of reasonable adjustments for supporting people with learning disabilities

CategoryAdjustment strategy
Meeting accessibilityProvide physically accessible meeting locationsBe aware of the pace of the meeting – not too fastProvide opportunities for discussions and questionsEnsure members with learning disabilities have had the opportunity to give input by asking them what they think and making them feel comfortable to talkProvide meeting papers a few days in advance of the meetingPrepare the individual about the topic of meeting discussions in advance of the meeting
Communication adjustmentsConsider whether sign language interpreters are needed, as well as closed captioning services and amplified hearing devicesCreate easy read versions of meeting documents, including large print, or use braille or disk formats. Avoid jargon and use simple language
Environmental adjustmentsConsider scent-free meeting environments or rooms with specific lighting
Financial supportConsider paying expenses, and accommodation and travel costs upfront because some people with learning disabilities do not have the financial capacity to pay for costs upfrontOffer childcare support or cover costs of a carer, support worker or other advocateProvide an honorarium or stipend if possible
TransportationOffer transportation options, such as a taxi or cab from and to home, train station, airport and bus station

Support and reasonable adjustments will need to be tailored and continually assessed throughout the guideline process through regular contact and feedback from the individual and the group’s chair. At NICE, a key contact person was beneficial for supporting individuals with learning disabilities to formulate their ideas before and after the meeting.

People with severe or complex mental health conditions

People living with severe or complex mental health conditions (for example, psychosis, alcohol misuse or schizophrenia) still experience barriers to participating in guideline development (van der Ham et al. 2014). There are several specific barriers and facilitators to consider, which van der Ham et al. (2014 and 2016) have reviewed in detail. In summary, guideline developers could consider the following:

  • Value and contribution: People living with mental health conditions may be perceived as unable to make valuable contributions or valid statements about different therapeutic treatments (medical or psychological) because of their impaired cognitive state. This can be an inaccurate assumption. A review of mental health guidelines in the Netherlands revealed that the number of patient members with mental health conditions on a guideline group ranged from 2 to 5 per guideline (van der Ham et al. 2014). For Norwegian guidelines on mental health, 5 user representatives had significant influence in scoping the topic and formulating recommendations (Helsedirektoratel [The Norwegian Directorate of Health] 2013).
  • Recruitment and representation: Gaining sufficient representation across the different classifications of mental health conditions can be difficult if the guideline topic is broad. Recruiting through patient organisations can help but could lead to over-representation of a particular mental health condition, depending on the focus of the organisation. In this instance, multiple recruitments and additional involvement methods will help gain representation, including incorporating existing patient research, panel or dialogue meetings, questionnaires or user focus groups, case studies or personal narratives. However, depending on available funds and resources, guideline developers will need to find a balance between gaining in-depth insight that requires fewer participants (for example, case studies) and methods that give broad perspectives but require large numbers of respondents (for example, questionnaires). If the right level of perspective is not achieved, there is a risk that patient organisations will reject the guideline, which would prevent it from being implemented.
  • Topic of interest and scope: Members with mental health conditions are likely to be less interested in traditional biomedical approaches and more interested in holistic approaches, social support, quality of life, and non-medical implications, for example, the ability to retain employment (van der Ham et al. 2014). Such factors should be considered in the scope of mental-health related guidelines, and their inclusion is achieved by inviting mental-health related patient organisations to scoping meetings at NICE.
  • Dropout and support: Dropout from a guideline group is a risk that developers will need to consider from the outset. Mental health can vary and fluctuate over time leading to patient members either joining the group late or resigning. Additionally, patient members might struggle to read lengthy guideline documentation. Solutions involve recruiting multiple patient members and providing and adapting specific content and process-related support. For example, documents should be summarised or discussed with the patient members before a meeting and a key contact person should have regular contact with the patient member throughout the guideline process. Developers could also consider enabling input for specific parts of the guideline that need the patient’s perspective. For the NICE guideline on violence and aggression in mental health and community settings (NG10; 2015), the developer encouraged peer support by providing a room for 4 patient and public members to meet before and after meetings to support each other. Members often experienced fluctuations in their conditions resulting in non-attendance at meetings. Peer support empowered the members to share experiences, encouraged a healthy critical debate, and ensured opinions were voiced in meetings.