Patient and Public Involvement
What is Patient and Public Involvement (PPI)?
Patient and Public Involvement (PPI) in research is defined as research done ‘with’ or ‘by’ members of the public, rather than ‘to’, ‘about’ or ‘for’ them. Traditionally, members of the public take part in research where researchers collect data from participants, analyze that data, and publish research results, usually in academic journals. In this type of traditional research, researchers make all the decisions about what and how research is carried out. Patient and Public Involvement (PPI) is a different approach to research where researchers and members of the public work in partnership to plan and conduct research, to interpret research data and to share and publicise the research results.
Interested in joining our PPI panel?
We are looking for people to join our PPI panel for the CUSTOMISE project. The aim of this 5-year project is to find out how to implement effective changes in everyday healthcare in a way that is acceptable and practical for health professionals and service users.
If you are interested you can sign up here.
What will being on the PPI panel involve?
If you agree to be on our panel, we will keep your contact details on file. We will contact you if we need your advice on our projects. Our aim is that the members of the PPI panel will bring a public perspective to our research. Here are some of the things we might need your advice on:
- What topics should we be doing research on?
- What information do people want to know before taking part in a research study?
- How can we make our information material easy to read and understand?
- How we can we let people know about our study results?
It is important to understand that we might not contact you to be involved. If we do not contact you, this is nothing personal, it just means that we have more people on the panel than we need at a given time, but we may need your help in the future.
Do I have to be involved?
No, choosing to be on the panel is completely voluntary. Even if you decide to be on the panel now, you can withdraw at any time and your contact details will be removed from our file. It is completely up to you.
What are the possible risks and benefits of being on the PPI panel?
Being on the panel and getting involved in research will give you a chance to share your views on how we do our research. Your involvement will help us to improve our research. It will also give you the chance to find out more about how research is carried out. We don’t think there will be any negative consequences for you. However, as part of the panel we may be asked to spend some of your time reviewing research materials or participating in discussions. We would like to assure you that we are available to answer any questions throughout the study.
Will my involvement be confidential?
This is entirely up to you. Some PPI partners want people to know that they are involved in research (for example having their name on a research report, on our website or academic publication) and other PPI partners prefer to keep their involvement private and confidential. Whatever you decide, we will respect your wishes.
How will my information be recorded, stored, and protected?
We will keep your contact details strictly confidential. They will be kept on a password protected UCC service and the only people able to access your data will be this research team. We will keep your contact details for a maximum of five years, after which time we will check with you if you would like us to keep them or delete them. For more information on how your data will be protected and your rights, please see the UCC Data Protection note dataprotection.