Because a living guideline programme may continue for some years, guideline developers need to consider retention, renewal and succession planning for patient and public members from the start. The approach needs to be tailored or designed for the type of PPI model being used, for example, a standalone patient and public panel who are regularly consulted, or a pool of patients ready to be called to action for specific tasks or guideline development groups.
Development groups with the same core membership
Feedback from NICE staff and patient and public members involved in developing living guidelines suggested advantages and disadvantages of maintaining a guideline development group with the same core membership over 24 or more months. Maintaining a core membership provided the advantage of consistency that allowed patient and public members to build better relationships and to feel a sense of safety and connection in meetings. This helped them to share sincere and authentic insights that more deeply influenced the development of recommendations. Having a consistent guideline development group also meant that members developed knowledge of the guideline development processes through co-learning, and so needed less training resources for new topics.
In contrast, a disadvantage was that the experience needed could change over the lifecycle of a living guideline. Also, some patient and public members’ experience might not be relevant over time. For example, some individuals stated that if they became well a year or two after a diagnosis of long COVID they did not think their experience would still be relevant. One suggested solution was to review membership and experience every 1 to 3 years, depending on the length of the guideline development lifecycle. But it is important to carefully manage turnover so that there is continuity of guideline development experience and knowledge in the group. Training and mentorship of new patient and public members is important to build knowledge and skills for guideline development.
Another disadvantage of retaining a core membership is that patient and public members can become generalists rather than specialists in specific areas over time. For example, in topics with a broad scope, it is unlikely that all participants will have specific experience of all topic areas. This means that some patient and public members might contribute to discussions more broadly, rather than specifically. To address this, guideline developers can ensure that consultations involve patients and the public with the right experience. Additionally, members with less experience can develop their knowledge of healthcare and guideline development processes throughout the lifecycle of a living guideline, resulting in richer contributions. For example, in the Australian COVID-19 guidelines, the panel provided valuable input about specific paediatric treatment options without having specific lived experience. This included a reminder to clinicians to consider the whole child and family situation when recommending treatments, to include parent and child input when decisions are more complex in children with high medical needs, and to ensure the evidence for treatment is clearly communicated.
It is also important to gain a variety of perspectives, including appropriate representation from a range of community groups. A solution is to ensure that gaps in committee experience are regularly reviewed, and new members are intentionally recruited to provide different perspectives. But diversity and inclusion must not be tokenistic and should be justifiable, for example, recruiting to enrich the guideline development.
Larger, more diverse development groups
Developing living guidelines can involve a workload that is more burdensome and with tighter deadlines compared with conventional guidelines. The process can also move at a much faster pace. The Synnot et al. (2023) authors found that involving a large group of patient and public members (more than 10 people) in a consumer panel allowed:
- a wider range of patient and public members’ perspectives
- the formation of writing groups with equal numbers of patient and public members and clinicians
- greater peer support for patient and public members
- upskilling of less experienced development group members
- sufficient flexibility to cover scheduling difficulties.
A large group of patient and public members also allows guideline developers to recruit people with a broader range of experiences and backgrounds. This can include people who might not have been a patient and public member representative before, as well as experienced patient and public members who can mentor others.
Patient and public member renewal
Because a guideline may be living for several years, it is reasonable to expect that patient and public members may prefer to make a limited time commitment or reduce or stop their involvement when their circumstances change. This has resource implications for:
- recurring recruitment activities
- devising new processes
- providing additional induction
- accessibility adjustments
- training and support
- ensuring clear (and ideally mutually agreed) expectations for new and continuing patient and public members.
It also provides an opportunity for succession planning. This is particularly so if there are different tasks or roles (for example, co-chairing meetings) for patient and public members with particular skills or experience.
It is essential to consult with, and involve, patient and public members about how the succession planning is carried out. Expectations and commitments should be made clear to PPI members. It is also important to ensure remuneration increases over time, in line with inflation or the current industry standard for an honorarium.
Maintaining engagement and motivation among a pool of patient and public members
NICE experienced some specific considerations for maintaining patient and public members’ motivation for continual engagement when working with a large pool of patient and public members for the breast cancer living guidelines. Staffing and resource limitations meant that not all recommendations could be updated at the same time. This resulted in some individuals being selected to work on guideline development groups, leaving other members with nothing to do. To address this, active pool members who were not assigned to a group were invited to take part in other involvement activities throughout the organisation (for example, to apply for another committee or take part in any organisational research or evaluation opportunities). When new topics were scheduled to be updated, the guideline developer team ensured that pool members with the relevant experience, who had not yet been selected, were invited to a guideline development group. This ensured fair distribution of opportunities to all members.
Based on feedback, NICE also found that clearly communicating the schedule of planned work, and giving regular updates on the outcomes of work between the guideline developer team and the patient and public member pool were essential for maintaining engagement. It is important for the guideline developer to not ‘become invisible’ to the pool of patient and public members while working in private or between meetings. To prevent this, the project manager emailed updates and schedules at the start of the development phase and before recruitment to the guideline groups. NICE is considering having quarterly newsletters to describe work that is ongoing and out of the public eye. NICE also has a People and Communities Network and shares regular newsletters on involvement opportunities, updates and webinars with all patient and public contributors in the organisation.
Maintaining engagement in a living guideline when there is minimal guideline activity
ALEC has maintained the guideline on type 1 diabetes in living mode since 2020. For much of that time, difficulties in getting ongoing funding and staffing challenges during the pandemic have meant that progress with recommendation development was significantly slower than anticipated. Because of the slower pace of updates, the frequency of communication from the guideline developers also reduced, and some members of the guideline development group (including patient and public members) felt uncertain about the status of the guideline and plans for future updates.
Although the type 1 diabetes guideline group faced unique circumstances, this example highlights issues that could occur in other living guidelines with resource challenges or limited activity because of minimal new evidence. In such circumstances, guideline developers should maintain regular and transparent communication with all guideline contributors, including the patient and public members. This is to ensure that they are kept up to date on the status of the guideline and plans for ongoing development (for example, through monthly emails).
Case study – Building trusting relationships
LEAPP living guidelines
For the LEAPP Pregnancy and postnatal living guidelines, the 16-member patient and public panel meets the LEAPP programme manager, PPI lead and a clinical panellist every 3 months to discuss the most recent set of draft guideline recommendations. Patient and public members have reported several benefits of these regular meetings, in which similar material (that is, draft recommendations) is covered. Working together allowed confidence and skills to grow, and helped build trusting relationships among all contributors.
Patient and public panel members are the first to review the draft recommendations. Their feedback is incorporated in the recommendations before they are seen by the first clinical panel. This review sequence is intended to make the recommendations more patient centred and relevant. The sequence has continued through subsequent rounds of recommendations, in which the evidence team has learnt from the previous feedback and adopted some of the same language or tone. These iterative changes and improvements have enhanced the patient-centred culture of the guidelines programme. |