Steps to maximise the benefit of PPI | Facilitated by: |
---|---|
Agree PPI needs of trial with research team (early trial design stage)*  • Define clear role/s and/or goals for PPI  • Define trial stages that PPI needed – including trial design stage  • Define demographic characteristics, skills and experience desired from public contributors  • Identify optimal format for PPI (e.g. attendance at trial oversight committee(s), and/or separate PPI meetings, email/telephone) – negotiate this with public contributors recruited  • Ensure PPI is costed properly to re-imburse for public contributors’ time and expenses, including carer support if appropriate  • Ensure PPI plan is fully justified in both funding applications and trial protocols |  • Training for research team on the role PPI can play in trials and how to maximise meaningful input. Include opportunities for discussion.  • Accessing useful PPI planning resources (e.g. PPI Toolkit for clinical trials [16]), and the NIHR INVOLVE public involvement cost calculator (https://www.invo.org.uk/resource-centre/payment-and-recognition-for-public-involvement/involvement-cost-calculator/)  • Consulting with existing patient or public panels may be useful at this early stage to help define PPI needs  • Consider inviting public contributors to be co-applicants on grant applications |
Recruit diverse public contributors  • Consider effective routes to invite public contributors (e.g. local groups, national organisations, existing PPI groups, advertising) to allow for diversity  • Recruit more than one public contributor, focusing on diversity of characteristics, skills and experience (e.g. some with research/committee experience and some without) |  • Drawing on insight of colleagues with previous experience of identifying and working with public contributors from target population, and existing relevant patient or public panels. |
Engage public contributors in trial oversight  • Provide an induction to the trial for public contributors including oversight processes  • Ensure meeting Chairs have skills to engage public contributors  • Provide on-going mentoring/support to public contributors in between oversight meetings, e.g. regular meetings/phone calls to foster relationship, answer queries, and provide training as deemed appropriate  • Accommodate needs of the patient group to facilitate PPI attendance at meetings (e.g. shorter meetings/attendance for part of the meeting, care needs or caring responsibilities)  • Adapt format of PPI to the emerging needs of the trial and public contributors |  • Accessing PPI training/support for trial team including meeting Chairs (e.g. UKCRC/NCRI PPI in research groups - Guidance for Chairs [41])  • Identifying appropriate research team member to provide on-going support to public contributors, and allowing protected time for this within their role  • Drawing on relevant resources provided in the PPI Toolkit for clinical trials [16] to familiarise public contributors with their role in the trial oversight committee, academic terminology and environment  • Considering both academic and public contributors’ commitments |