Public and patient involvement in research

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. The development of the next HRB strategy is progressing and putting the public at the heart of the research that the HRB funds is emerging as a theme.

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
  • National PPI Network (currently open)

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.

 

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 1-3 of these research proposals and complete a short assessment report within a pre-agreed period of time (usually 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 plain English summary of the funding application easy to understand? Could it be improved?
  • In your opinion, will knowing the answer to the research question make a difference to real people? (now or in the future)
  • Has there been any public and patient involvement in the development of the application?
  • Are there any plans for public and patient involvement in the research throughout its lifetime?
  • Have the applicants included any money for public involvement activities in their overall budget?
  • Would you be willing to take part as a participant in the research if it related to you as a patient/carer/member of the public?
  • 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. 

Close

Until recently, public reviews have been used solely to provide direct feedback to applicant teams so they could take that feedback on board, and thereby gain experience of incorporating Public and Patient Involvement (PPI) into their research proposals.

From now on, integrating the public reviews into panel decision making will be the norm for calls which undergo public review, and this step is in line with our published plans to strengthen PPI input into HRB decision-making processes.

In addition to feedback on the scientific aspects from the international peer-reviewers, the HRB receives written feedback on the quality of Patient and Public Involvement (PPI) from two public reviewers for each application ahead of the panel meeting. 

All of the reviewers’ comments (both public and scientific) are passed on to the applicants, who have the opportunity to respond. The reviews and the related applicant responses are made available to the panel before they meet.

The new public review process has been used by the review panels that were assessing two HRB post-doctoral fellowship award schemes. These schemes were, the Applying Research into Policy and Practice (ARPP) awards and the Clinician Scientist Fellowship (CSF) awards.

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 pilot initiative in February 2017 that involved members of the public in reviewing certain aspects of research proposals to our Investigator-Led Projects scheme (ILP) 2017.

You can read the evaluation of the pilot  on our website. We considered the pilot a success, and went on to extend this process to a following schemes since 2018:

  • Definitive Interventions and Feasibility Awards (DIFA) 2018
  • Applying Research into Policy and Practice Postdoctoral Fellowship Awards (ARPP) 2018
  • Investigator-Led Projects scheme (ILP) 2019
  • Applying Research into Policy and Practice Postdoctoral Fellowship Awards (ARPP) 2020
  • Clinician Scientist Postdoctoral Fellowships (CSF) 2020
  • Definitive Interventions and Feasibility Awards (DIFA) 2020
Close

The HRB maintains a dedicated database of potential public reviewers. Because so many people expressed an interest in our pilot, we have a large panel of public reviewers  and haven’t  actively recruited people since. 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. Training workshops are available to those selected to review.

Please fill in thePublic Reviewer Application Formand send it to Sara Lord

 

Guidance notes for our public reviewers can be found here

Close

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 the project managers: -

Close