Clinical Research PPI Working Group (CR-PPI-WG)
Since 2016, HRB CRCI has partnered with IPPOSI on the topic of patient and public involvement (PPI) in clinical research leading to the formation of a Clinical Research PPI Working Group (CR-PPI-WG)
What do we mean by ‘patient and public involvement’ (PPI) in clinical research?
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
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.
- The leaders of clinical research in both academia and in industry become PPI champions in their organisations
- The voice of the public and patient is included in a meaningful way across the full research cycle of all clinical research conducted in Ireland
- Duplication is avoided and available resources are maximised
- Public and patient members of the WG have a strong influence over how the WG operates
Work Group Structure and Membership
Members of the group can be from:
- Clinical research networks / other academic research entities
- The HRB, HRB CRCI and IPPOSI
- Patient organisations with an interest in connecting with researchers
- Commercial companies involved in clinical research
- Members of the public interested in contributing to research
How to get involved?
Damian O’Driscoll, Academic Research Coordinator, HRB Clinical Research Facility at UCC
Ciara Peters, Administrator at HRB Clinical Research Coordination Ireland