Research ethics and patient and public involvement (PPI)

Question 1

Active involvement- patient and public involvement

Answer 1

research that is done with or by the public, and not to, about, or for them.
• identifying and prioritising research topics;
• being part of research advisory groups and steering groups;
• undertaking research projects and;
• reporting and communicating research findings.

Question 2

When is ethical approval required for active involvement?

Answer 2

They are acting as specialist advisers, providing valuable knowledge and expertise based on their experience of a health condition or public health concern.
Therefore ethical approval is not needed for the active involvement element of the research, (even when people are recruited via the NHS), where people are involved in planning or advising on research e.g. helping to develop a protocol, questionnaire or information sheet, member of advisory group, or co-applicant.
However, where people’s involvement results in direct contact with study participants the ethics committee will need to give specific consideration to the involvement as an element of the ethical consideration and approval.
1) The well-being and safety of the people who are actively involved as researchers
2) The well-being and safety of the people who are taking part in the research as study participants.

Question 3

PPI is good because the research will be…

Answer 3

• Relevant to the people it is trying to help;
• Beneficial in terms of delivering meaningful outcomes for patients and/or;
• Conducted in a way that is sensitive to the needs of the participants – through better patient information, recruitment processes and general management of the project.