PPI Unit I 2015

5.4. Lesson 2b Levels of involvement

There are different levels of patient and public involvement ranging from informing people about what researchers do, to collaboration and empowerment, as illustrated here:

Source: Adapted from the International Association for Public Participation (IAP2 Federation) Public Participation spectrum, 2015

Researchers often claim they are ‘involving’ people by informing the public about the results of a study through a lay summary or a media output. It’s a one-way communication based on professional expertise, whereas true involvement requires researchers to listen and act on the patient/public view in the design and conduct of their research. The ‘empowerment’ end of the continuum means the research is ‘user-led’. Patients and the public are in charge of the research, including managing a budget, which represents a radical culture shift. An effective patient and public engagement strategy for a research study or programme might require activity at all levels of the continuum.