Patient & Public Involvement (PPI) in research is gaining momentum in Ireland and is of increasing relevance to many health research stakeholders.  In the area of Clinical Research, the importance of early, meaningful, and systematic patient & public involvement has never been higher.

The Clinical Research Working Group in PPI has come together to define what PPI means in the context of Clinical Research in Ireland.

Here's what this working group have defined as PPI in clinical research

In general, PPI in research means research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.  (INVOLVE definition – http://www.invo.org.uk)

From a clinical research perspective, this is distinct from, though clearly related to, work that is done to raise public awareness of clinical research and to increase participation in clinical trials.

Thus, ‘actively involved in clinical research’ means (for example) activities such as where patients and members of the public:

– help to decide what will be researched

– are involved in developing a grant application

– provide early input into the design of clinical studies

– are members of a clinical study steering committee

– work with researchers to develop patient information material

Here's what PPI is not!

What it is not?

PPI does not include the recruitment of study participants. This is participation of the public rather than involvement.

PPI does not typically include work aimed at raising awareness among the public around research, such as media publications of research findings, and outreach activities such as open days in research facilities.  This can be described as engagement, not as involvement.

However, in order to encourage patients and the public to take part in research and /or

PPI actions, some engagement activities are required.

Importance of training

Importance of Training

For PPI to be meaningful for researchers and patients/members of the public alike, training is critical for both researchers and lay people to ensure that the patient/public voice is heard and listened to, and that their contribution is effective.