Recruiting patient and public members to a living guideline development group is mostly like recruitment for a conventional guideline. The chapter on recruitment and support covers many of the recruitment considerations (for example, who to recruit and how to gain a wide range of experiences) and recruitment methods, including open recruitment (that is, the selection process through an advert, application form, and informal interview) and nomination (that is, inviting expressions of interest through patient organisations). But for living guidelines, there are some additional considerations for recruiting at the beginning and also for managing, retaining and renewing membership. Considerations when recruiting a living guideline group at the start include:
- Some living guidelines, particularly those developed for a public health emergency, need patient and public members to be quickly recruited and with short notice. This can make it more difficult to ensure that people with the right experience and capacity are involved at the right time and that they have sufficient experience of the topic area.
- The recommendations that will be updated can reflect the emergence of available evidence and that could mean it is unclear what experience and representation is needed at the start of developing a living guideline.
Case studies of recruiting patient and public members to a living guideline development group
Recruiting a broad pool of patient and public members to be matched to tasks and development groups
NICE’s early and locally advanced breast cancer living guideline used the model in which a pool or faculty of patient and public members were matched to tasks and development groups. As described, this allowed patient and public members to be quickly recruited from the pool to a guideline development group. It also ensured recruitment of individuals with diverse characteristics and different breast cancer treatments that aligned with the topics to be updated. This helped to address the issue of pace and representation of experiences relevant to the emerging evidence. There were 2 stages to recruitment:
* recruiting and developing the patient and public member pool before development work on the guideline started
*selecting and matching process of individuals from the pool to the development groups as work on the guideline began.
Ten patient and public members were recruited to develop the pool at the start. One person was a member of a voluntary and community sector organisation. NICE recruited people using an open recruitment method. Adverts were promoted through social media and voluntary and community sector organisations for breast cancer. In an application form, individuals were asked about their:
*experiences of different treatments and experiences relevant to the topics to be updated
*knowledge of issues facing patients with breast cancer
*experiences of group working
*knowledge of equality, diversity and inclusion related to the topic.
Shortlisted applicants attended an interview in which they were asked about their experiences, knowledge and skills in more detail. They were also given information about the guideline development process.
After the patient and public member pool had been established, NICE guideline developers and the People and Communities team worked with the patient and public member pool to co-create a selection process to help match individuals’ experience to topics associated with the early and locally advanced breast cancer and advanced breast cancer living guidelines. Patient and public members completed a survey about their experiences with breast cancer. The information helped the developer team select and invite at least 2 patient and public members to the different update panels, when the development groups started work. This ensured that the developer teams could quickly convene a guideline development group with relevant experience. |
Co-designing and carrying out recruitment for a living guideline
As noted, the LEAPP guideline used a standalone patient and public panel model for PPI. The team partnered with 2 highly experienced patient and public members to co-design the PPI approach for their living guideline. Together, 1 LEAPP team member and the 2 patient and public members designed and carried out the recruitment approach. This included wide promotion through trusted patient organisations and networks, and invitations for written applications in an expression of interest process. They received 101 applications, which included considerable diversity in people’s lived experiences of pregnancy and postnatal care, experience as a patient and public representative, and demographic characteristics.
Because it was a living guideline, we selected a large panel (16 members), which ensured more diversity in people’s pregnancy and postnatal journeys and healthcare experiences. It also helped to recruit a group that was more reflective of the Australian population (including people living in regional and remote areas, Aboriginal and Torres Strait Islander women, recent migrants and refugees). Being a living guideline that was funded for 5 years, the team recruited a large panel because we anticipated member attrition over time. The LEAPP guideline team also used this opportunity to select some people with limited or no experience as a patient or public member (but who brought diversity characteristics, such as experience of being a teenage mother, or living on a low income). The team expected that they would, with support, gain skills and confidence over time and learn from more experienced members. |