Selection Criteria
Prior to selecting individuals to your initiative, it is good to consider how you will assess their suitability for inclusion. While there is no need for strict eligibility criteria, it is useful to consider characteristics that could indicate people’s ability to effectively participate in your initiative. Often, the most important attributes are motivation, confidence and ability to voice opinions. Another desirable quality might be prior experience of working with communities in some capacity. However, prior research engagement experience, English language skills or education might not be essential PPIE membership criteria.
It is also important to consider factors that would indicate that an individual is not a good fit for the initiative. Primary focus on compensation, lack of curiosity about the project, and an inability to articulate a clear motivation for joining all point to someone who may not be committed to engagement. During interactions, for example, potential members may listen to the research team's pitch out of respect towards scientists, doctors or the person who referred them. These ‘Yes Men’ might not be able to critically contribute. Finally, any individual with disproportionate impact on group dynamics may need to be excluded.
Selection & Onboarding Process
A three-step process to vet and onboard members following expressions of interest might be useful. Having multiple interactions with potential members helps confirm they are appropriate for the initiative and establishes the foundations of a good collaborative relationship between the coordinator(s) and new members.
● Vetting: An informal phone discussion with one of the coordinators is used to understand motivations for joining the PPIE group, confirm that individuals can commit the time required for the initiative and establish whether they are prepared to provide honest feedback during meetings. If the potential member and coordinator jointly feel that inclusion is appropriate, a time is arranged to meet in-person.
● Confirmation: An hour-long in-person meeting is used to complete the ‘My Involvement Profile’ (Appendix L) on a laptop together with two coordinators in order to facilitate a two-way exchange about expectations and needs. The profile asks about experiences, skills, interests and motivations, allowing coordinators and members to get to know each other more intimately. The exploration also helps identify the unique perspectives a member brings to the initiative and ways they may be able to contribute.
● Onboarding: Prior to attending the first meeting, the new member will be asked to review and sign the Terms of Reference for the group. The Terms of Reference outlines the aims and activities of the group, as well as the responsibilities and code of conduct of members.
Further Training & Orientation
Additional training may be needed depending on the nature of your PPIE initiative. One approach is to teach members whatever is necessary for them to effectively engage with the task at hand. For example, explaining the core concepts of informed consent prior to reviewing consent materials for a study. PPIE members are experts in lived-experience, but do not necessarily need to be experts in research, ethics or medicine in order to contribute meaningfully. A further consideration is relationship-building within a group. If someone new joins, it is worthwhile thinking about how they will integrate and what you can do to promote cohesion (e.g. organise social activities).