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Shaping health research in Ireland, both members of the public and patients should be given an opportunity to play a key role as central contributors to provide insight to health research and receive associated benefits. Their valuable input in this process can help positively shape research questions right from the beginning and as a result make health research more applicable and impactful.

The Health Research Board (HRB) has been at the forefront of public and patient involvement (PPI) in health research in Ireland. We are delighted to announce the launch of the PPI Collection on HRB Open Research Platform. In this blog, we hear from the collection advisors, Éidín Ní Shé, School of Population Health, University of New South Wales, and Avril Keenan, Health Research Charities Ireland, who tell us why this collection is so important and how they anticipate that these papers will be a source of guidance and inspiration to many others.

PPI aims to support and enable the active involvement of people in the planning and undertaking of health and social care research. It occurs when public and patients, work with researchers throughout the research process; from prioritisation, planning and overseeing research studies, to providing analysis, sharing the findings and supporting implementation in practice.

Over the last few years, there has been a significant shift in Ireland to advance PPI, which has led to the launch of this PPI collection on HRB Open Research Platform. This platform will highlight all PPI related resources and information and we hope the content featured will demonstrate how effective public and patient involvement in research can be, while simultaneously encouraging open dialogue and placing the patient experience at the heart of health research.

Involving those who are directly impacted by health and social care

The HRB has adopted the NIHR INVOLVE definition of public and patient involvement in research, which is research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

This might be a relatively new concept for some researchers, but it is an increasingly prevalent initiative, as researchers from the PPI ignite group, National University of Ireland, Galway, so compellingly argue in their open letter, which was recently published on the platform. PPI advocates hope to get to the point where every study needs to include a PPI section, similar to a research ethics section that is mandatory.

PPI is being rapidly adopted and advanced in Ireland. HRB has taken the lead and has put together an implementation plan to support public and patient involvement both within the HRB and through HRB-supported projects and programmes. The HRB PPI ignite Awards (total €1.7 million) aim to promote PPI in health research in Ireland and have been awarded to five institutions with a second phase launching in 2021. HRB have also recently integrated public reviews into their own funding decisions.

A home for public and patient focused health research on HRB Open Research

Our newly launched PPI collection provides a home for PPI research on the platform. To demonstrate advances in PPI over time and celebrate creative and inclusive approaches, this collection aims to provide further evidence of the value of PPI with submissions that support learning and understanding of the language and undertaking of involvement. The papers contained within the collection should also help guide and inspire others.

Our PPI collection advisors, Éidín Ní Shé, School of Population Health, University of New South Wales, and Avril Keenan, Health Research Charities Ireland, tell us more:

Why is important to have a dedicated PPI space on the platform?
While we are in the midst of a culture change to include the opinions and expertise of public and patients in shaping health research, we are by no means there yet. Any culture change requires drive and focus, and this dedicated PPI collection will be a valuable tool in progressing the embedding of PPI in research. It is especially important that it is hosted on an accessible and open-access platform, where the public can access the papers as easily as researchers.

What do you hope the collection can achieve?
We want to showcase the best practises of PPI that continue to grow in Ireland, so we hope that the collection will provide a very practical resource for anyone looking to incorporate PPI into health research activities. While there are many international PPI resources, people new to an evolving change in research process often like to observe and understand how other organisations or associates are approaching it. It is therefore crucial and a major advantage to have a collection of some of the best examples from the Irish health research community.

What research highlights can be found in the collection?
The collection showcases a range of PPI work in Ireland from being involved in setting the research questions, undertaking co-design work, to leading open letters relating to the importance of PPI during Covid-19 pandemic.

There are many highlights among the collection, including user-centred approaches to studies investigating how to shape healthcare services, patient perspectives on how to communicate research results, a focus on the inclusion of seldom heard voices and PPI in the shaping of patient information for clinical trials.

What do you see as the future of PPI?
The future of PPI is for it to be an equally integral part of the health research process as obtaining ethical approval or publishing results. Universities and research institutions will be central to realising the future of growing and embedding PPI within health research. This includes the metrics they live by, as well as valuing and supporting true involvement in health research. It is also important that platforms, such as HRB Open Research, are used and promoted to increase and support the evidence for best practise in PPI.

We would like to strongly encourage more submissions to this collection. In particular, we would like to see research articles providing further evidence of the value of PPI and submissions that support learning and understanding of the language and undertaking of involvement. We would like the collection to demonstrate advances in PPI over time and to celebrate creative and inclusive approaches. We also hope for examples where members of the public and patients are leading this work and offering their valuable perspectives and experiences on involvement.

If you have any queries please get in contact at info@hrbopenresearch.org.