The methods and strategies to support patient and public members throughout living guidelines are generally the same as for standard or conventional guidelines. The GIN Toolkit chapter on recruitment and support provides a detailed overview of best practice from research and guideline developers. Types of support can be broadly categorised as informal support (for example, peer-support, a named contact, check-ins, emotional support), and practical support (such as, making reasonable adjustments, financial reimbursement).
Anticipating ongoing training and support needs
The specific challenges of living guidelines (for example, shorter time frames to complete the work, fewer or more meetings for each update) can make it difficult to implement best practice for involving people. Examples from our experience include a lack of time to do a thorough person-centred needs assessment, create plain language evidence summaries of large evidence reviews, or produce detailed glossaries of technical terms. Alternative solutions are needed in these situations, such as:
- avoiding using jargon during meetings
- organising pre-meets and debriefs to adequately address patient and public members’ training and support needs
- providing clear timelines of the guideline development lifecycle and involvement points
- managing expectations better, such as by signposting patient and public members to where they can be most effective when commenting on documents between meetings.
Since the COVID-19 pandemic, many living guideline development meetings are now held online. Guideline developers may have to assess patient and public members’ digital literacy and technology needs for them to be able to fully participate in meetings (for example, access to a working computer with a microphone and camera). Training on using the meeting platform (such as Zoom) might also be needed. Patient and public members also sometimes report that they miss opportunities to connect informally and would welcome the chance to connect outside of meetings (for example, by using WhatsApp, sharing email addresses, organising meetings). The section on virtual working in guideline development groups in the chapter on recruitment and support gives further information.
Remuneration is particularly important for living guidelines, because of the tight timeframes, changeable meeting times and possible increased workloads between meetings. This can affect work or other commitments (for example, childcare arrangements), or result in financial loss. Remuneration should be current with relevant standards in your region, and be updated each year in line with any changes or inflation.
Case study: Implementing and testing a tailored toolkit of support in NICE’s living guidelines
NICE’s toolkit
NICE developed a basic ‘toolkit’ of PPI support strategies designed to overcome some of the barriers preventing the application of best practice in living guidelines (described at the beginning of this section). Figure 1 shows the toolkit of support that was pilot tested for a rapid COVID-19 guideline for systemic anti-cancer treatments and the breast cancer living guidelines. The strategies in the model are described in this section.
An informal person-centred needs assessment was implemented to ensure that individual support, accessibility or training requirements were considered. This was done during the induction or in a one-to-one meeting shortly after recruiting the patient or public member. It ensured that individual needs were identified when timelines were short and could be reviewed after the first meeting.
Newly recruited individuals were also paired with a more experienced patient and public member, who offered peer support. At first, this strategy was implemented to foster relationship building, a sense of community during virtual meetings, and to quickly build confidence to contribute during meetings. This also supported the co-learning process, because the experienced member shared knowledge and tips on how to contribute and make an impact.
Inductions were done at the start of the guideline development phase, either in a group setting or in a one-to-one meeting. The purpose of the induction was to build rapport with a named contact in the public involvement team, provide essential information on the processes and available support (to foster co-learning), and to do an informal needs assessment.
Pre-meets (before a meeting) and debriefs (after a meeting) were set up with technical staff, the chair, and the patient and public members. The primary aim was to focus on co-learning and to ensure that the patient and public members understood the structure of the meeting, and the work to be discussed. Patient and public members could ask questions about the work and the meaning of any technical jargon. Technical staff could propose important areas that the patient and public members could prepare for before the main meeting. For the debrief meetings, patient and public members could ask for feedback on their contributions, which helped them to understand what impact they might have had. Debriefs ensured they could ask any questions about the guideline methodology and clarify anything they were uncertain about.
Feedback about their experience was collected from patient and public members either by email or during the debrief meeting. Technical staff, or the chair, gave feedback on the areas in which they had been effective. Examples of such areas of impact included influencing discussions, informing recommendations, and shaping the guideline scope. Armstrong et al. (2017) provide a framework for areas where patients can have an impact in guideline development, and this can be used to help guideline developers shape feedback responses to patient and public members.
Additional support and techniques were implemented. These included creating and circulating biographies of all committee members to help build a sense of community, ensuring adequate breaks, and adding patient and public items to the agenda. Agenda items were only implemented if patient and public members felt comfortable with this approach and agreed that it would be useful.
An informal evaluation of the model of support indicated that most techniques were easy to implement, were not too resource intensive, and allowed patient and public members to become more involved in the meetings. Template agendas were found to be useful for guiding the pre-meets and debrief meeting discussions. The strategies helped patient and carer members understand what was needed from them, helped them to prepare for the meeting, and to provide rich discussion during the meeting. Patient and public members reported that they appreciated the feedback from technical staff because it enhanced their confidence, and they felt valued or appreciated. Some patient and carer members found that they required less pre-meets and debriefs as they became familiar with their role after sitting on multiple committees and updates. Over the course of the lifecycle of a living guideline, the toolkit of support should be tailored and adapted based on the needs of the patient and public member, rather than using a fixed or rigid approach. |
Figure 1: Toolkit of PPI support strategies to overcome barriers to best practice