Supporting individual patient and public members

Appropriate and adequate support strategies play a large part in overcoming barriers and facilitating effective patient and public engagement during guideline development. According to Armstrong et al (2017a), these include:

practical support (for example, making reasonable adjustments to support people who are ill or disabled)
informal support (for example, listening, advice and emotional support)
financial compensation
co-learning and training
managing group dynamics
enabling re-assessment and feedback on the patient or public member’s role.

Practical support

Qualitative research suggests that practical support can consist of providing multiple shorter meetings instead of full-day meetings, providing the premeeting papers in good time before a meeting, providing physical resources (for example, paper versions of documents), and agreeing mechanisms for soliciting opinions (Armstrong et al. 2017a). However, individuals might have various practical support needs associated with their work and provision should be made for ‘reasonable adjustments’ to respect those needs. This might include changes to the physical environment for the group’s meetings (for example, accessibility of the rooms). How meetings are conducted should be considered (for example, with a hearing loop induction system or chairing techniques in a virtual meeting), and the communication used in the group (for example, avoiding jargon and titles such as doctor, explaining medical and research terms, and agreeing appropriate communication channels, such as email). The length of meetings might need to be altered, and breaks added, if a person’s condition affcets their level of concentration (such as those with pain or some mental health conditions). Catering requirements should also be considered for those with diabetes or other conditions affected by diet. If conducting virtual meetings by tele- or video-conferencing, provide regular breaks.

When to assess support needs

Patient and public members should have the opportunity to discuss their practical support needs at interview, on appointment, and throughout their role. This is because many physical and mental health conditions fluctuate, and additional needs might arise during guideline development. In some countries, the laws on disability discrimination or equality cover the provision of aspects of practical support. For example, the Accessibility for Ontarians with Disabilities Act (Thompson 2020) in Ontario outlines and enforces accessibility standards that developers would need to follow to remove barriers. This could include providing accessible formats on request.

Practical support examples

There are many examples of practical support for guideline developers to consider and include (but are not limited to):

Making adjustments for people with sensory impairments, like providing large print documents, microphones in meetings, or a hearing induction loop system. An interpreter could attend guideline meetings to assist members who have hearing loss.
Offering the chance to participate virtually by video call (for people with high-grade conditions that prevent them from leaving home, like late stage heart failure, or individuals who cannot attend a meeting in person).
Providing hints and tips on having an effect in virtual meetings, such as keeping oneself on mute when not speaking and methods to get the chair’s attention.
Booking meeting rooms large enough for an electric wheelchair or other medical devices and stair-free access.
Making adjustments for people who experience fatigue, such as longer breaks or having a room available in which people can rest.
Adjusting the room lighting or lighting of screens, such as illumination levels, glare and direction.
Providing chairs that meet the needs of individuals with musculoskeletal conditions.
Creating a ‘break out’ room for young people, or anyone, to take a break if they find the meeting too emotional (for example, when discussing sensitive topics).
Providing documents on coloured paper for people who have an autism spectrum condition or those with dyslexia. Also, providing documents in plain language, or at very low-level language and offering support to explain these for people with low literacy or numeracy.
Providing a dedicated toilet for people who need one.
Providing financial support for care for a dependent relative if a carer has been recruited, or for childcare if someone has children.
Providing financial information to ensure any payments do not adversely affect individual’s state benefits.
Ensuring any food provided meet people’s dietary requirements.
Texting a person with dementia or with memory problems half an hour before a pre-arranged telephone conversation or to remind them that support is available.
Having a neutral support person (to minimise bias) highlight the most important sections of papers to read or comment on, or ask them specific questions with a patient or public focus.

For some topics, a patient organisation could offer practical support to individuals. For example, for the NICE guideline on tuberculosis (TB) among under-represented groups (NG33; NICE 2019), members who had experienced TB were involved and received additional practical support from a homeless charity. This included use of a permanent address for communications because they lived in temporary homeless shelters, and access to a computer for communications between meetings.

Valuing members

Patients and public members largely volunteer their time to be involved in guideline development activities so their time, effort and value should be acknowledged. At a G-I-N PUBLIC workshop, patients collectively stated that being welcomed and respected for their dedication was more important than financial compensation for their time. However, taking part in guideline development for some people can mean taking unpaid time off work or can incur costs. The advantages of offering compensation outlined by INVOLVE (2011) include:

Supporting equity of access, by compensating people for lost income if they must take time off work or arrange childcare, travelling costs, access to journals and technology, access to care or personal assistants and so on.
Supporting equity of power in groups.
Acknowledging the professionalism and contributions to public service of group members.

Types of compensation

As a minimum, G-I-N PUBLIC recommends providing expenses, such as travel costs or accommodation, and providing compensation for time and effort. Compensation might also cover carer or childcare responsibilities and should be fair and appropriate for their role. Compensation could be provided in other cases, such as for attending training events or other preparation work. Payment in kind, such as vouchers, can also be offered. This is likely to be governed by local and national policies. Whatever the type of compensation, developers should be transparent during recruitment about any compensation arrangements.

Lack of budget

Some organisations may rely on volunteers to conduct patient involvement. In this case, be clear in recruitment documents that volunteers are needed. A lack of funds to cover payment or reimbursement of expenses may affect the ability to recruit people, especially those from a lower socio-economic background. In rare cases, patient organisations may offer support. There may be policies or laws that govern unpaid work so check the local context.

Consideration for those receiving state benefits

In some cases, receiving a payment will qualify as paid work and could cancel any state benefits (unemployment or disability payments) received. Furthermore, payments may qualify as taxable income, which can affect members who are self-employed. In this case, expenses (for example, train tickets and accommodation) should be booked by the organisation and paid from organisational budgets, which should avoid the individual being taxed. There may be an organisation in your country who can advise on this. If so, get their advice before the recruitment stage so that enquiries from potential applicants can be answered.

Compensation in practice

NICE’s lay member payments and expenses provides an attendance fee for patient and public members that covers either a half-day or full-day rate (2020a). Travel, subsistence expenses, accommodation costs and contributions to carer costs (for example, childcare or carer arrangements) are covered. NICE will book and pay for any such expenses so that the members are not out of pocket while they wait for reimbursement. If the member is an employee from a patient organisation, then it is possible to reimburse or pay the attendance fee to their organisation rather than the individual.

Informal support

Informal support might consist of emotional support and building trust and rapport, which can make someone feel welcome in their role. The amount of informal support someone might need will vary so it will need to be tailored to the individual. Some individuals might have a strong background in patient advocacy, committee work and decision making, whereas other people might find guideline development group work a completely new experience.

Methods of informal support

Examples of informal support include:

Providing individuals with a key contact person who can help if they need further information or encounter any difficulties, either with practicalities or with the personal effect of working in a group.
Offering to contact a ‘peer group’ of other patients who have been involved in previous guideline panels. Additionally, developers can offer contact with a one-to-one ‘buddy’, who is an experienced patient or public member at your institution. It is usually advisable to have someone who is not another member of the same guideline development group. Another contact could be a guideline project manager.
Contacting each individual before the group’s first meeting. This will provide an opportunity to address any questions about the first meeting and assess any additional practical or informal support needs for the meeting. It is useful for a key contact person to introduce individuals to both the guideline group and the supporting staff.
Following up each individual after the group’s first meeting and any other key meetings. This will provide an opportunity to receive feedback of their experience and identify if anything can be improved for the next meeting.
Making additional check-in calls or sending emails can be useful for specific tasks (for example, reviewing materials) to find out if any supports are needed.

Managing emotional impact

Taking part in a guideline development group can have an emotional impact for some individuals. They might become frustrated if they feel their ideas are not fairly considered, or they can become upset when the group discusses sensitive issues, for example. It is important that individuals discuss any difficulty they have early on. Guideline developers should make it clear that that these are normal reactions, not unprofessional, and they should identify any support networks and coping strategies if the need arises. If left unresolved, it could lead to patient members stepping down from the guideline group.

Informal support in practice

To provide informal support, NICE in England and the ÄZQ in Germany provide a key contact person for patient and public members, so that they know who to contact for support or to discuss any issues that arise. At NICE, the key person will contact the patient member before the first group meeting and this is an opportunity to confirm any additional support needs. They will also greet the member at the first meeting. After that, the key person makes contact by email after the first and second meeting and then every 3 months (for shorter guidelines) or 6 months by phone or email. NICE also provides the opportunity for new members to meet existing experienced patient and public members, either face-to-face or virtually, to discuss the guideline development process and their role. Individuals are also able to contact their key person at any point. Similarly, SIGN offers a buddy who can provide support on a one-off basis or throughout the guideline development process (SIGN 2019).

Sometimes patient organisations or support groups can provide informal support, particularly for specialist groups. For example, when working with migrant groups, the ÄZQ works with migrant interest groups who could help or give support for certain conditions when possible, such as diabetes.

It is also particularly important to develop trust and rapport with certain groups and this can involve considering specific cultural norms and traditions. In Canada, when working with indigenous populations, RNAO integrate traditional cultural ceremonies or practices, such as sharing a gift of traditional tobacco or smudging, into guideline development processes. Providing culturally relevant support demonstrates respectful engagement and can establish trust and rapport between the individuals with lived experiences and the developers.

Training and co-learning

A barrier to patient engagement is the concern over whether the patient or public member has the skills and knowledge associated with research and group working to participate effectively in the guideline development process (Armstrong et al. 2017). As previously discussed, it is not necessary or advisable to only recruit individuals who have existing research and technical skills. Furthermore, patient members fear that professional members will dominate the meeting with their knowledge and ideas (Shippee et al. 2015). Training and co-learning are useful strategies to overcome such barriers and can increase patient confidence by encouraging capacity building, which is a fundamental principle of patient and public involvement. However, there are also concerns that too much training may result in ‘professional’ patients who no longer bring their individual experience. Even basic training in evidence-based medicine can automatically exclude people with low numeracy skills. Therefore, training should be tailored to the needs of everyone. An explanation of the difference between training and co-learning follows.

Training

Training should improve members’ confidence about their roles and how to make an impact in the guideline development process. Training is more formal than co-learning and can consist of 1 or more days of structured learning with specific learning outcomes related to patient and public involvement in guideline development.

Training can include different topics, including:

guideline development processes
research methods and terminology
technical skills
critical appraisal skills
specific guideline development knowledge (for example, GRADE)
strategies for participating effectively in the group (for example, assertiveness)
building positive working relationships
managing group dynamics.

There are different formats for delivering training. It can be provided in-house, by an external organisation, patient organisation or international society (for example, the European Lung Foundation), or be self-directed (for example, online training). Large organisations might be better equipped to provide their own training either face-to-face or electronically, which might not be possible in smaller organisations. Organisations may choose to use external training events or courses covering research and critical appraisal skills. If neither internal nor external organisations can offer training, free online resources to support self-directed learning exist. Several organisations offer free online courses to patients and members of the public, including Cochrane and CUE – Consumer’s United for Evidence-based healthcare.

A list of courses and websites offering free training can be found in the resources section.

Co-learning

One fundamental principle of effective patient and public involvement is co-learning (Nguyen et al. 2020). Co-learning differs from training because it is mainly informal and is an ongoing process that should occur throughout the entire guideline development process. It is the process by which patient and public members, professional members and the guideline developer team teach, learn and share research knowledge and skills together. The process also benefits professional members. There are several ways to encourage co-learning:

Providing training on guideline methods and processes, research strategies and overviews of the evidence retrieved from a review at the start of a meeting. This could be in the form of a presentation or verbal description by the technical team to the whole group, with an opportunity for the group to discuss their understanding. Presentations or learning resources can also be sent before the meeting when appropriate.
Providing an online repository for all documents and sections for different working groups, which might include a specific section for patient group members.
Avoiding jargon, explaining technical terms in the meeting, and having a glossary of medical, or guideline-related definitions and acronyms. Professional members should be aware that it is also their responsibility to explain medical acronyms and terms. Different professional groups may have different terms for the same concept or use the same term, but with a different meaning.
Providing resources, in the form of toolkits or a ‘hints and tips’ document that informs the individuals about their role, the processes and resources to support their work.
Holding lay-friendly seminars on specific topics, such as health economics.
Offering networking opportunities with other patient and public members, which can be face-to-face or through an online forum.
Providing free access to online journals.
Providing regular contact with a key contact person to discuss ideas and any issues.
Providing feedback on performance to encourage learning and development.

Co-learning is a valuable process to consider, especially if your organisation cannot offer formal training. Networking opportunities can be provided either before the start of a group or during development in the form of a lunch, an event, a workshop or by providing people with contact details for other patient and public members. New members can meet more experienced patient members and discuss the guideline development process or how to contribute effectively. During development, the patient and public members may be willing to support each other by sharing contact details but local data protection rules need to be followed and details should not be shared without permission.

Training and co-learning in practice

NICE provides a formal full-day training event (either face-to-face or virtually through Zoom) for new patient and public members, including presentations and group exercises covering the following: research terminology, the guideline development process, critically appraising scientific research using the GRADE system, group working and skills, producing recommendations, and a chance to learn from experienced patient and public members. Similarly, the ÄZQ initially assesses patient and public member’s training needs and provides them with reading materials, such as ‘testing treatments’ (Evans et al. 2011). If required, ÄZQ offers a full-training day, or shorter units, tailored to their training needs. Digital modules are also provided using software such as Microsoft PowerPoint with audio narrations.

In terms of co-learning, NICE’s Public Involvement team delivers a presentation on patient and public involvement at the first group meeting. The developer team provides brief training on the guideline development process, the roles and responsibilities of staff, and health economics. Any learning materials are sent to members before meetings. Technical or research leads are available to answer any questions from all group members. Patient or public members are provided with a paper or digital toolkit of resources and information for working effectively. They are also given the chance to meet an experienced lay member before the start of some guidelines. Their key contact person will also provide knowledge, by telephone or email, on the various stages including consultation, publication, and action to support guideline implementation.

Re-assessment and feedback

Another strategy for enhancing co-development is through re-assessment of the roles and expectations and providing feedback on the patient and public members’ performance throughout guideline development (Shippee et al. 2015). This process can identify areas for development, which can be addressed through further training and co-learning. It can also help to address barriers associated with performance, such as not contributing or attending, or advocating their own agenda, which undermines the guideline. The process can also highlight the need for additional practical support strategies and areas where the member is having the most impact.

Providing feedback can ensure continual upskilling of the participants and is important to ensure meaningful and valuable involvement throughout the development process. For those with limited committee experience, it can increase confidence by confirming they are fulfilling the role to an acceptable standard and contributing effectively. Furthermore, it can ensure that the members feel supported and valued, which enhances engagement by empowering the individual. For some guidance programmes at NICE that are longer than 1 year, assessment of the role and feedback is provided every 6 months during telephone check-ins, or yearly for more formal feedback by the group’s chair.

Managing group dynamics

There is a large body of psychological and sociological literature on how groups form and behave, including the factors that create productive groups and the effects of power dynamics and status on the productivity of groups (for example, Forsyth, 2019). Power dynamics can occur as a result of age, gender, race, culture and socio-economic status, which largely operate at the unconscious level through stereotypes (for example, as discussed in Guinote and Vescio 2010). There are many useful texts focusing on this topic, which go beyond the scope of this chapter, some of which are listed in the section on further reading.

Understanding group dynamics is important and can help guideline development groups operate effectively and ensure that patient and public members’ insight is included. This responsibility largely lies with the chair or moderator of the group and some useful general strategies are:

Highlight the importance of patient and public involvement: Consider delivering an early presentation to the guideline development group on the importance of patient and public involvement. Stress that these members have equal status with valuable contributions and provide examples of where patient and public members have had an impact on previous guidelines.
Chair training: see the chapter on the role of the chair.
Management of the meeting: Patient and public members should not be seated in an isolated area of the meeting and should be able to get the chair’s attention. The chair should be briefed to bring the patient and public member into conversations, and some groups find it helpful to have a specific agenda item on patient and public matters associated with the guideline.
Relationship building: Encourage individuals to identify potential allies in the group who can be a source of support for patient and public members during meetings. Alternative methods should be considered if meetings are conducted virtually when individuals need to connect by email, telephone and other digital means of communication.

The chapter on the role of the chair has further information on this topic. It is important to reassure patient and public members that their experience may differ from other patients and public members.

Recruitment and support