After receiving many excellent applications, this year's winners of the PIER award are the Martin House Research Centre (MHRC) team. They work in partnership with young people, parents, other family members and relevant organisations to enhance the quality, relevance and impact of the research that they undertake.
The MHRC team now have more than 40 parents and young people involved in their research studies and governance processes, and are leading nearly 30 studies, with several on the NIHR CRN portfolio.
- About the PIER award
With support from NIHR, we have run the Paediatric Involvement and Engagement in Research (PIER) award for the second year now to recognise excellent patient engagement and significant contributions to the NIHR Clinical Research Network.
This award is open to research active paediatricians and multidisciplinary research teams who make outstanding contributions to involve paediatric patients and families in the development and delivery of research.
Professor Paul Dimitri, Vice President for Science and Research provided the following comments regarding the MHCR team and their work:
Professor Lorna Fraser, Director of the Martin House Research Centre (MHRC), and her team at the Centre undertake research concerning the care and support of children and young people with life-limiting conditions or medical complexity, their families and staff who care for and support this population.
The MHRC works in partnership with young people, over 40 parents, other family members and relevant organisations to enhance the quality, relevance and impact of their research. The MHRC have developed a family advisory board (FAB) with members coming from different backgrounds and their children have had a range of underlying life-limiting and complex health conditions. The FAB have led the way in supporting innovative methods of recruitment and delivering studies. The MHRC patient study advisory panel have helped choose appropriate measures and design data collection materials.
Through their work and collaboration with families, the MHRC have been successfully awarded numerous NIHR grants. The MHRC demonstrate true commitment to PPI (patient and public involvement) partnership in research.
We spoke with Professor Lorna Fraser, Director of the MHRC about their submission and the value of involving children and young people in research.
Briefly tell me about what the project was and how it was conducted
The Martin House Research Centre is a a multi-disciplinary centre for research on the care and support of children and young people with life limiting conditions or medical complexity, their families and the workforce that care for them.
The Centre is holistic in its scope, recognising that the care and support needs of children and families span clinical/medical, social, psychological, parenting/caring, spiritual, financial and practical domains. We have a portfolio of about 30 studies, many of which are on the NIHR portfolio.
Why did you apply, and what does it mean to you and your team to win this award?
First, children with complex and life-limiting conditions are often forgotten about – this was even more evident during COVID.
Secondly, the PPI work of our Family Advisory Board and the young persons group is so valuable and impactful we wanted to be able to share our experiences widely. There are some really powerful videos on our website for anyone who is interested.
Often professionals think we shouldn't bother families when their children have very complex health problems. But our FAB group think very differently: it's families who want to make that choice, not the professionals.
Why is involving children and young people in your research so important?
Children, young people and their families are central to all of our research studies. The impact of our PPI work is really clear: we are answering research questions that are important to the children and families and our recruitment and dissemination methods are greatly improved.
The RCPCH-NIHR PIER Award will be running again for 2023. Keep an eye out for more information.