PPI 2015 Unit III

Robust evidence of the impact of patient and public involvement in research, it is often said, is scant. Challenges to evaluating impact include: inadequate theoretical underpinnings for involving patients and the public in research; variability of methods and levels of involvement (process variability); the variety of contexts in which involvement is conducted; lack of clarity about purpose, process and outcomes of involving people; lack of standard methods of evaluation. Patient and public involvement is just one aspect of research design and it is difficult to pin down what action directly influenced any particular outcome. Even if methods were standardised, it is unlikely that public involvement carried out in the same way would achieve the same impacts across different research projects. It is difficult to generalise from methods used in one impact assessment to another or to generalise about the findings of different studies of impacts. The diversity of the patients/members of the public who are involved and the aims of and context for involvement make it hard to predict where involvement will have the greatest impact. Patient and public involvement is also a relatively new and fast-growing area of practice, so evaluation methodology is still developing.

We will look at the nature of ‘evidence’ in Lesson 2; for now, we will consider the reported evidence of the impact of patient and public involvement on research. Each of these case studies of individual clinical trials and research programmes claim to show the impact of involving patients.