PPI 2015 Unit II

Your reading will have helped you to understand the variety of ways of involving patients and the public in the design and conduct of a clinical trial or research programme.

These might include:

• Consulting patients about research topics/questions
• Contributing to proposal writing and being co-applicants on grants
• Involving people in project steering group or Trial Steering Committee
• Having a Patient Advisory Group of three or more people for a study
• Specific tasks such as reviewing the lay summary of a grant application or report
• Commenting on patient information sheets
• Participating in systematic reviews
• Interviewing participants, focus group facilitation
• Contributing to data analysis/interpretation
• Facilitating workshops on the impact of research
• Helping to write reports, lay summaries, presentations
• Conference presentations and publications
• Website content and design
• Appointing a patient panel to review PhD applications
• Sitting on interview panels for researchers
• Contributing to staff training

Probably the most common way of involving people is appointing one or more patients to a project steering group or Trial Steering Committee. It is most likely the commonest way because it seems to require little effort from the researchers, but if it is to be effective, considerable care and attention are needed. Any costs must be built into the grant application.

Stop & think

After the lecture and with the help of the Lesson 1 partner readings complete the Stop & think questions below.

Stop & think Q1. What are the advantages of appointing a patient or member of the public to a trial steering committee? Show / hide answer Answer It ensures the patient/public view is represented at strategic and management levels, making sure the patient has an overview of the whole research process. The patient/s appointed can build strong working relationships with the researchers and a good understanding of the research, which builds confidence. It ensures the patient view is included in problem-solving (for example if recruitment is slow). It allows the patient perspective to be included in interpretation of findings and dissemination of results to a public audience. Q2. What challenges are associated with appointing a patient or member of the public to a trial steering committee? Show / hide answer Answer It’s a long-term commitment which may not suit everyone. It may be difficult for the person to attend meetings in the week if they work or have caring responsibilities. The person/s appointed need to be able to express their views without being intimidated. All other members of the steering group need to listen, encourage and value the patient perspective. The patient/s appointed might need training to help them to operate effectively and will certainly need mentoring and support; this takes time and effort from the researchers. Managing expectations can be difficult, for example if people are involved in an application which does not get funded.