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Table 2 Recommendations for PPIE in commissioned research evaluations of nationally implemented programmes

From: Reflections of patient and public involvement from a commissioned research project evaluating a nationally implemented NHS programme focused on diabetes prevention

Pre-funding of the research project

Researchers could work with public contributors to agree on a project name that the whole group feel comfortable using, avoiding the use of complicated acronyms where possible

Consider alternative remuneration methods for PPIE members (e.g., voucher payments), based on their preferences or potential adverse impact on their income/benefit entitlements

Start of the research project

Provide detailed information about the project timelines, roles of the PPIE group, and scope of the PPIE input, to ensure all members are informed at the start of the process on what is expected

Be explicit about the type of research that public contributors are getting involved in, for example, distinguishing between research that designs a service and research that evaluates a service

Gather ideas from the PPIE group at the start of the project on how they feel they could contribute to the research to ensure that the purpose of public involvement has been jointly agreed

Throughout the research project

Group facilitators could plan a schedule for upcoming meetings in advance, to ensure meetings accommodate for everyone’s preferences (including those of the researchers and PPIE members) and to avoid having long breaks in between meetings

If there are long breaks between meetings, PPIE members should be kept up to date with developments from the project

The involvement of someone who is independent of the research team could collate formal feedback from the PPIE group on a regular basis to provide contributors with more opportunity and scope to feedback on any issues that need addressing throughout the duration of the research

Longer project timelines may inevitably result in a turnover of PPIE research facilitators and/or public contributors. Measures should therefore be put in place to ensure handover between group facilitators, inductions for new members, and minimal disruption for the group if this occurs

The research team should ensure adequate support is provided to PPIE members, in training and resources, as well as in time, recognising their role as voluntary contributors who have their own commitments outside of the research project

Resources to consider

If using remote involvement, facilitators should provide training in how to use video conferencing to ensure all members feel at ease with the technology before meetings. Nonetheless, face-to-face meetings also remain important to allow the development of relationships and trust within the group, especially at the start of their involvement when the group are new to their PPIE role. Thus, if using remote involvement, a hybrid approach with the opportunity for both in-person and online meetings would be beneficial

Researchers should consider the extra resources and training that may be required for (a) remote meetings, including the necessary equipment such as a camera for video conferencing, and (b) the use of complex methods used in the research. Such resources and training should be budgeted for in the original funding application