Few models for PPI involvement have been used, and far fewer evaluated, because living guidelines are a recent concept. Many factors determine how patient and public members are involved in conventional or living guidelines. Such factors include the topic, the stages when input is needed, the backgrounds and preferences of the patient and public members and guideline developers involved, the kind of patient and public input needed, and resource considerations.

We have practical experience with 3 different models:

• a standalone patient and public panel
• patient and public guideline development group members
• a pool of patient and public members matched to tasks and development groups.
• But there are likely to be other suitable approaches and methods for PPI in living guidelines.

Standalone patient and public panel model

ALEC used a standalone patient and public panel, that is, a consumer panel, in its living guidelines on stroke, COVID-19, and pregnancy and postnatal care. In all 3 guidelines, ALEC used an expression of interest process to recruit patient and public members from an existing pool of patient and public members (stroke guidelines), a patient organisation (COVID-19), or an open process carried out mainly through social media (pregnancy and postnatal care).

The consumer panels are composed of at least 8 people with lived experience of the health condition or health state. In all 3 living guidelines, ALEC aimed to recruit a group with geographic and cultural diversity. The consumer panels have an advisory role, but between 1 and 4 patient and public members of the panels are also members of other decision-making or oversight groups, such as the guideline development group or the steering group. These members act as a bridge between the PPI panels and decision-making groups.

The Consumer Panel Model allows patient and public members with a broad range of perspectives, skills and backgrounds to be involved. Other advantages include ensuring consumer input is recognised and prioritised, especially if the consumer panel’s input carries the same weight as that of the clinical panel(s).

While developing and maintaining the Australian COVID-19 guidelines, the 8-member panel met every 2 months (every 2 weeks in the first months of the pandemic) by videoconference in 90-minute meetings. The members had an orientation and GRADE training, together with clinical panel members. Two patient and public member co-chairs, drawn from the group, led the panel. They were also members of the guideline’s leadership group (who functioned as a guideline development group). The consumer panel generated new questions, topics, and outcomes, and provided feedback on draft recommendations, with their views considered at guideline development group meetings, and included in the additional information on individual recommendations.

This model was adapted and further developed for the Australian Pregnancy and postnatal care guidelines (Living Evidence for Pregnancy and Postnatal Care [LEAPP]), with the formation of the 16-member LEAPP Consumer Panel who meet every 3 months through a 2-hour videoconference. Four patient and public members of the Consumer Panel are also co-chairs of the 2 clinical panels (2 for each panel), and all 4 are also members of the guideline leadership group. The Consumer Panel reviews recommendations before the clinical panels, and their feedback is incorporated in the draft recommendations before the clinical panel meeting.

For the stroke guidelines, the 28-member consumer panel gets emails with draft summaries of relevant guideline sections (for example, patient values and preferences, practical considerations) that align with their nominated interest areas, together with guidance on how to respond. Panel members email feedback to staff members of the organisation, who review all their feedback. Consumer panel members co-produce lay versions of finalised recommendations through writing groups with clinicians, and meeting by video or phone. Synnot et al. (2023) give more detail on the Consumer Panel Model for living guidelines.

Patient and public guideline development group members’ model

NICE’s COVID-19 guidelines in the UK and the Australian guidelines on inflammatory arthritis and type1 diabetes are 3 examples of living guidelines in which patient and public members are included in the guideline development group. Patient and public members were recruited either through guideline developer networks (inflammatory arthritis and diabetes) or an open recruitment process, using expressions of interest forms and informal interviews to check suitability of experience relevant to the topic (COVID-19 guidelines). In these guidelines, patient and public members contributed to all aspects of guideline development, participating in meetings and out-of-session email discussions. Both the type 1 diabetes and inflammatory arthritis guidelines included a patient and public member in the guideline oversight or steering committee.

In the COVID-19 guidelines, the guideline development group scheduled a 2-weekly online meeting, but only met as needed. The PPI guideline development group for the inflammatory arthritis guidelines meets as needed, depending on the recommendation (to date, this has been about once a month). For the type 1 diabetes guidelines, the PPI guideline development group met about once every 2 months but had more meetings at the beginning of the process. Synnot et al. (2023) give more detail on the model of patient and public member involvement in the living guideline development groups.

Patient and public members matched to tasks and development groups model

NICE tested a model of living guidelines to update the breast cancer guidelines, for example the early and locally advanced breast cancer guideline. At the start, they recruited a pool (also known as a ‘faculty’) of 10 patient and public members, and another pool of clinicians. When topics were scheduled to be updated, a guideline development group was formed from clinicians and patient and public members in the pools. Further detail on the recruitment experience and matching process is given in the section on recruiting patient and public members to a living guideline group. Each guideline development group included at least 2 patient and public members, who had the same membership and voting rights as all the other members of the development group. This model also ensured diversity among the pool regarding different societal characteristics (for example, gender [including one man], age [including younger and older individuals], and LGBTQ+ members)

The guideline development groups were involved in different stages of guideline development, such as:

• prioritisation (a survey and 1 meeting), including helping the guideline developer decide which topics were a priority from a patient perspective
• scoping and protocol development (1 meeting), including identifying the topics, outcomes and preferences that are important for patients and the public
• developing recommendations (1 meeting), including influencing discussions
• post-consultation (1 meeting), including shaping recommendations by incorporating the comments from patient and professional organisations.

Using this model ensured that the pool included people with a broad range of experiences covering different aspects of the recommendations to be updated. For example, individuals were recruited with experience of genetic testing, different treatments (for example, neoadjuvant chemotherapy), different types of breast cancer (such as HER2-positive breast cancer), and other aspects associated with breast cancer (for example, lymphoedema, psychological support).