Find out more about patient and public involvement in our research
The HRB Primary Care Clinical Trials Network Ireland (CTNI) are a group of researchers and GPs (doctors) who are working to find answers to important and common questions about how to best treat patients being cared for by their family doctor and other healthcare professionals in the community (or in primary care). Researchers in our network work with GPs and other healthcare professionals all over Ireland to conduct research.
Our PPI group have a major role to play in realising our network’s aims. Click on the sections below to find out more about our PPI group and how it works, and fill in the form below if you would like to speak to us about being involved in the group.
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Public and patient involvement (PPI) occurs when the public/patients work in partnership with researchers in setting priorities for research, in planning and managing research studies, as well as in summarizing, distributing, sharing, and putting results into practice. Public involvement in research is perhaps best defined as:
Research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them
This definition is from the INVOLVE organisation, which leads PPI in research in the UK. PPI is an important step in ensuring that the real life experiences of patients are considered when decisions are being made about what research to do, what are the most important questions to be answered, how to design studies that patients are more likely to both take part in studies and also to stay involved in until the end.
No – taking part in research studies is different to taking part in PPI.
Participating in research studies usually means only being involved at one stage of the project, and contributing by completing a task like trying out a new treatment, doing an interview with a researcher about a specific topic or experience, or filling out a questionnaire. The involvement in this case is more one-way (think about a research questionnaire link online – the participant sends their information in but doesn’t get to start a conversation) and mostly only lasts for as long as the specific tasks lasts.
PPI is the active involvement of members of the public, patients, and/or carers and guardians in the research process alongside the clinicians and researchers. PPI contributors make decisions or help to make decisions about how the research should be carried out and shared. The relationship between a research project or group and PPI contributors is usually longer term, and is active on both sides with lots of communication.
Doing PPI doesn’t mean you can’t be a research participant, and being a research participant doesn’t mean you can’t also do PPI. Both are hugely rewarding roles, and are really important in making sure research continues to be more and more relevant and useful.
The Primary Care PPI Group is made up of members of the public, patients, and carers, who have experience of attending primary care services (such as GPs). The group meets regularly, usually about once a month, and discusses health research going on in NUI Galway and across the country.
The Primary Care PPI Group works best when it includes people with a mixture of life experiences: male and female, young and old, city and country. Members draw on their life experiences to contribute to discussions and debate. They also have input in the running of the network and have been involved in the current 5 year plan for network activities.
The Primary Care PPI Group meets regularly, currently for 1.5hrs almost every month on Zoom (fully virtual). Sometimes the group is also invited to take part in activities outside these meetings, for example there may be invites to contribute to specific research projects or activities, or to attend or present at an event. Invites are always optional, and the group members are supported in all these activities by the staff of the Primary Care CTNI.
We ask members of the group to commit to being reflective about the topics we discuss, to be respectful of others in the group, and to treat discussions as confidential.
Members of the PPI group directly contribute to the Network aims of improving individual patient health and health care through conducting and supporting high quality clinical research in primary care. The input of the PPI group has helped to ensure that health research reflects the needs and interests of patients and the public.
Members benefit directly from the opportunity to demonstrate their skills and bring their own experiences and opinions to the table. The group is a respectful, open forum for discussion and links the members with the wider research and health communities in Ireland. As well as giving people the chance to improve their skills by taking part in meetings and events, members are also supported by CTNI staff to learn more about the practice of research.
To ensure contributions are recognised and expenses are met, members of the group receive vouchers when taking part in group activities, details of which are outlined in advance by CTNI staff.
To find out more, fill out the form below (you may need to click to make it visible) so our staff can get in touch with you.
Please note that currently (April 2023) we have briefly paused some PPI activities, including adding new members to the group. If you wish to express interest in joining the group, you can still use the form below and we’ll contact you with updates.