PPI: Patient And Public Involvement

Question 0

What are the 3 levels of user involvement?

Answer 0

1) consultation: a research team might consult service users to comment on the research. Ask users for their views and use this to inform and influence decision making
2) collaboration: service users are part of a team who undertake research. Service users might collaborate with researchers to design, undertake and/ or disseminate results of a research project
3) user control: research where the focus of power, initiative and decision making with service users. This does not mean that service users undertake every stage of research or that professional researchers are excluded from research

Question 1

What is patient and public involvement (PPI)?

Answer 1

User involvement in research: service users getting actively involved in the research process (as opposed to being participants)

Question 2

Why is user involvement important?

Answer 2

Users can offer different perspectives to professionals

Users are able to give insight into important issues related to care

Users help ensure money and resources aren’t wasted on irrelevant research

Users want to be involved

Users are likely to be more satisfied and happier with services if they have played a part in their design

Users can influence outcome measures of a study by suggesting measures which are important to people who use services

Users can help access people who might be marginalised e.g. people from ethnic minority communities

Users can advise on how results of research should be disseminated so they are accessible to others

Question 3

What are some barriers to user involvement in research?

Answer 3

A key barrier is felt to be mainstream research assumptions that user controlled research is subject to bias but service users stress its transparency and capacity to be rigorous, as well as the value of it taking sides with disempowered groups.

User controlled research can generate particular difficulties, pain and stress for service user researchers who share similar experience to those of research participants. This needs to be addressed with sensitivity and support;