Under our new strategy, Health Research – making an impact, the HRB sets out to be a thought leader in PPI. When the public gets involved in research, they work alongside researchers or research funders to help shape:

  • What research gets done
  • How it’s performed
  • How the results are shared and applied in practice
  • What information is collected and how it is used to improve health service provision
The importance of PPI

Being involved in research is not the same as participating in it. It’s about being a member of the research team that works together to design and run the study. As a result, the research is more transparent and relevant, and is likely to better address the practicalities of conducting the research, particularly where people are asked to participate.

We at the HRB believe it is critical to support PPI. So, for over five years we have been championing it in Ireland, and our work is clearly illustrating that people’s insights and life experience can inform research in ways researchers operating in isolation can’t. Involving people in the work we do and the work we fund is leading to improved research with more meaningful outcomes, which translates into better health and wellbeing.

Shared thinking on PPI

Not everybody will be familiar with the different functions of the HRB: We are a research funder; we manage national health information systems; provide evidence synthesis to the Department of Health; and more recently we have begun providing the Secretariat for the Health Research Consent Declaration Committee (HRCDC) and hosting the National Office for Research Ethics Committees.

Given this breadth of our work, our commitment to putting people at the heart of everything we do, and our strategy objective to be a thought leader in PPI, it’s important that we share thinking on it across our organisation. This allows us to:

  • Increase awareness of PPI activities in different parts of the organisation
  • Explore our collective experience with PPI and potential collaborations across units
  • See what we can learn from each other
  • Maximise our PPI impact into the future.

To that end, a recent cross-organisational meeting addressed different initiatives in progress throughout the HRB. The conviction that it enhances the quality of our work was a common thread to the ensuing discussions, which also covered activity in the following areas:

National Health Information Systems

By their very nature, our National Health Information Systems (NHIS) have always been mindful of the people they are there to help – people with physical, sensory and intellectual disabilities, people receiving treatment for misusing drugs, families affected by drug deaths, and people who have been admitted into psychiatric inpatient settings and their carers.

As such, each health information system has been tailored from the start to be accessible, to provide value to the relevant group, and to inform the provision of services. For example, families who have lost loved ones to drugs were central to the establishment of the National Drug-Related Deaths Index and are also very involved in how the system is run. This approach to the NHIS began long before we started using the term PPI, simply because it was the right thing to do. Going forward, the NHIS will continue to drive engagement with the service users we aim to help and formalise its approaches to PPI.

Research Strategy and Funding (RSF)

The RSF team has used its significant experience and network across the Irish research system to design and implement a variety of PPI initiatives since 2016. This began with a survey asking what actions should be prioritised, and the results were clear: awareness-raising about PPI and practical help for researchers to engage in meaningful PPI came out on top.

As a funder, we had a role to raise awareness and we did this in part by asking applicants about their PPI engagement during the development of the application and plans for the project, and supporting an associated budget in our awards.  We also started a public review of applications (assessing the proposed PPI, but not the science) in 2017. This was used for researcher feedback only at first, and finally integrated into funding decisions last year. Whilst it was important to reach that point, it was equally important to allow time for a better understanding and more meaningful engagement with PPI for it to happen.

As a funder we were also able to build capacity among the research community to involve people, patients and carers in research by creating a funding scheme in collaboration with the Irish Research Council. The PPI Ignite Awards in 2017 were introduced as a springboard in five universities to support PPI within the research community and initiate culture change where it is seen as the norm. In March 2021, this developed into the PPI Ignite Network, which brings together seven universities, 10 national partners and over 50 local partners. The PPI Ignite Network is an ally in embedding PPI into Irish research from undergraduate teaching to promotions and research strategies, in building capacity, and in tackling common barriers. 

Now and into the future, we will continue to encourage PPI influence on HRB-funded research. As we turn towards developing the next phase of supports, we have again sought input via a survey, asking how Irish funders should support PPI. This information will be crucial in making plans for the next five years.

The National Office for Research Ethics Committees and the HRCDC

As newer additions to the national health research environment in Ireland, both the National Office and the HRCDC started as they meant to continue, with PPI representatives participating as equals at the committee table from the outset. These members bring to bear lived experiences and perspectives as members of the public, as carers and as users of the healthcare system in Ireland, and their opinions are given equal weight to those of representatives regarded as health research experts.

The National Office ran a public campaign calling for potential National Research Ethics Committees (NRECs) members, which resulted in approximately 150 expressions of interest and six PPI appointments across three recently launched NRECs. Those not selected at this point are kept informed of other opportunities as they arise. Meaningful PPI will be an important measure of the success of the National Office’s remit in education and outreach as the NRECs system becomes established.

Given that the HRCDC can make a ‘consent declaration’, for the processing of personal data for health research that is in the public interest, and where consent cannot feasibly be obtained from research participants, it considers PPI as an essential data protection safeguard. Many of the research studies it considers are requested to strengthen PPI activity and engage with relevant public and patient advocacy groups and networks as a condition of the consent declaration made. All conditions of a consent declaration are monitored by the HRCDC to ensure compliance.

Both teams reflected on the huge value brought to their committees’ discussions and decisions by PPI representative members.

Going forward

As we seek to put people at the centre of everything we do, areas we want to work on include improving how PPI is represented on our website and increasing the inclusiveness of PPI across several dimensions of diversity. To maximise opportunities for interested PPI contributors, we agreed to begin sharing opportunities we become aware of across both the public reviewer database in the funding function and the National Office database of interested NREC volunteers.

In the meantime, as we bring our collective experience of PPI to the fore in the coming months and years, we look forward to sharing our learnings with you.

This blog was authored by Anne Cody, Head of Investigator-Led Grants, Research Careers and Enablers at the HRB.

Further reading:

Read more about PPI