There is a government requirement that all clinical research must have some public or patient involvement in order to help direct research. Hence it is important to involve PPI groups in your research project. The following “best practice” recommendations in any piece of research can help you conduct a study with embedded public and patient participation:
- Search data bases (regional or national RDS) for patient groups suitable for your research
- Plan to talk to at least one patient/PPI group and ask for their advice on your research idea and how it may impact on patients. The group may give insights which you might not have considered
- Patient/PPI groups can help develop lay person summaries, consent forms, surveys and patient information sheets, with clinical language explained in plain English for the intended demographic. This will help to get the information right first time.
- Such groups can comment on the methods, the possible impact on patients and relevant concerns to them
- A lay person, patient or public (PP), on a steering and/or management group can help research to be on schedule and keep to guidelines
- Your local Research Design Service (RDS) may offer an award to help you gain initial PPI input. Emphasise the role of PPI when writing your proposal
- Have at least one service user (PP) fully involved throughout the research process, preferably backed up by a PPI group e.g. SECF. Have service user involvement on your steering group and, if appropriate, as co-applicant for your management team
- Include the costs for PPI input, using INVOLVE rates, for their travel expenses, payment for each meeting attendance and input, in your research funding application
- A PPI colleague could assist by writing a lay summary for wider dissemination to the public. Social media might be a good way to disseminate your findings, but costs need to be taken into account in your proposal.