xxUnit I OLDxx

Origins of patient and public involvement in research

Still trying to find a good history….1970’s consumerism in health care/society; participatory research; citizen science

Underpinning values

Ives et al. identify two categories of motivation for patient and public involvement in research:

1. Pragmatic/outcome oriented – PPI is a means to an end i.e. it improves the relevance and quality of research
2. Ideological/process oriented – PPI is an end in itself i.e. it reflects democratic and ethical principles

There’s a third motivation which is not value-driven:  researchers involve patients and the public because they are required to, usually by the grant-funding body they are applying to.

Let’s examine these in more detail.

1. The pragmatic argument: patients’ experiential knowledge of illness and health care will be beneficial to research, therefore it is useful
2. The moral imperative: patients/the public have a right to be involved in publicly funded research that may impact on their health and services; it improves the transparency and accountability of research
3. Ticking the PPI box to get a grant, without necessarily believing in it

Levels of involvement

The involvement – collaboration continuum; Arnstein’s ladder; partnership and reciprocity