The HRB has put together an implementation plan to support public and patient involvement (PPI) both within the HRB and through HRB-supported projects and programmes. We are the first funding agency in Ireland to do so.
By ‘public’ we mean everyone in Ireland who has an interest in health and social care as a public service including potential users of services. By ‘patient’ we mean people who use services such as patients, service users, clients or their carers. By ‘involvement’ we mean the active involvement between people who use services, carers, the general public and researchers. It does not include the use of people as participants in research (or as research ‘subjects’) and does not provide data for individual research projects.
We are using the definition of PPI in Research proposed by INVOLVE: Research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them
We have undertaken the following initiatives:
- Public review
- PPI Ignite awards
Contact: Sara Lord
Each research proposal received by the HRB undergoes what is called an international peer review before a funding decision is made. Peer reviews are carried out by experienced researchers with expertise in the area of the proposed research. They ensure that the research we fund is of the best possible standard. Typically about 20-25% of applications are funded.
These reviewers only provide a scientific perspective of whether the proposed research is sufficiently relevant, timely and useful. What is currently missing is the perspective of people who use or are potential users of the health and social care system in which the research takes place.
By asking members of the public for their opinion, we can help to ensure that researchers ask the right questions and in a way that the public understand, in addition to making sure that the people participating in the research are approached in the right way. Therefore the HRB invites input from public reviewers to help improve the quality of the research that we invest in.
We do not expect you to be able to provide commentary on the scientific methodologies or theory. Rather we hope that through your lived experience and your perspective as a member of the public you will be able to comment on whether the research is in the best interests of the patient or general health of the population. We will be doing a public review for two award schemes in 2018, the Definitive Interventions and Feasibility Awards, and the Applying Research into Policy and Practice Postdoctoral Fellowship Awards.Close
Researchers applying for HRB funding have to complete an application form saying what research they want to do and how they want to do it. As a public reviewer, you will be asked to review 1-2 of these research proposals and complete a short assessment report within a pre-agreed period of time (4 weeks). The review can be done from home, in your own time, and you will be paid a standard fee for each application reviewed.
Your review is written from your perspective as a member of the public or informed by your knowledge and experience as a patient, carer and or user of health services.
We would particularly like to hear your views on the following aspects:
- Is the proposed research important to patients, service users, carers or the health of the general population?
- Are people likely to be willing to take part in the research?
- Is the plain English summary of the funding application easy to understand? Could it be improved?
- Are there any plans for patient and public involvement (PPI) in the research application?
- Could you identify or suggest any areas for improvement of PPI in the research?
- How might the researchers make sure the findings of the research reach the general population?
Your comments (without your name) will be used to provide feedback to researchers on how they can improve public and patient involvement in their research ideas. Over time we hope to introduce public reviews into the overall scoring process. Therefore, when you have completed your review, we would also like to ask you for feedback on how you found the process overall, or for any suggestions that you may have on how we can build on this review process into the future.Close
In our strategy we made a commitment to promote the engagement of the public and patients in the research we support. We therefore launched a new pilot initiative in February 2017 that involved members of the public in reviewing certain aspects of research proposals.
Researchers have had formal and informal feedback on their scientific methodology for many years, and have honed their skills through this. We hope to achieve a similar improvement in Public and Patient Involvement (PPI) methodology through providing dedicated feedback on the quality of PPI from public reviewers. At this stage the feedback plays no role in the scoring and funding decisions of the HRB international selection panels, and scientific quality is assessed, as always, by international peer reviewers.
The selection process for awards in the Investigator-Led Projects scheme was completed by summer 2017, as was the public review pilot. We have spent some time looking carefully at how the pilot went and what we can learn from it. You can read the evaluation of the pilot on our website. We would like to thank the many people who expressed an interest in working with us on this, and in particular our inaugural public reviewers. We consider the pilot a success, and have decided to extend this process to two award schemes in 2018, the Definitive Interventions and Feasibility Awards, and the Applying Research into Policy and Practice Postdoctoral Fellowship Awards.Close
The HRB maintains a dedicated database of potential public reviewers. Because so many people expressed an interest in our pilot, we won’t actively recruit people for the new public reviews in 2018. However, if you have a particular interest in being involved and joining this initiative please do get in touch. You will need to have an email account and be able to fill in forms on a computer. Please fill in thePublic Reviewer Application Formand send it to Sara Lord
Guidance notes for our public reviewers can be found hereClose
To help researchers tackle the Public and Patient Involvement (PPI) challenge, the Health Research Board teamed up with the Irish Research Council to launch PPI Ignite. This funding scheme is designed to help Institutions create the right environment, training, support and processes to help researchers engage public and patients in their research from the start.
Five universities were awarded funding to actively develop capacity in Public and Patient Involvement.
To speak to individual institutions about their projects contact: -
- NUI Galway – Prof Sean Dinneen sean.dinneen(at)nuigalway.ie
- University College Dublin – Prof Eilish McAuliffe Eilish.mcauliffe(at)ucd.ie
- University of Limerick – Prof Anne MacFarlane anne.macfarlane(at)ul.ie
- Trinity College, University of Dublin – Prof Mary McCarron mccarrm(at)tcd.ie
- Dublin City University – Dr Veronica Lambert veronica.lambert (at)dcu.ie