The 2024 RCPCH-NIHR PIER Prize went to a research team at Alder Hey for their outstanding work on PADDINGToN (PArent co-Designed Drug INformation for parents and Guardians Taking Neonates home).
Photo shows the PADDINGToN team, from top left to bottom right: Julie Lalor, Rachel Corry, Andrea Gill, Louise Bracken, Fiona O’Brien, Elaine Neary, Cara Sutton, Janet Clark, Catrin Barker, Rachael Dore, Mark Turner, Kathryn Johnson, Brian Cleary, Naomi McCallion,Bernie Carter, Fiona Gaffney and Neil Caldwell.
About our prize winner
The PADDINGToN resources for parents and families were developed in collaboration with parents, pharmacists, neonatologists, nurses and the wider multi-disciplinary team (MDT). The PADDINGToN resources provide comprehensive guidance to support parents of neonates to give medicines safely and includes an extensive frequently asked question section and a medication administration record which parents can use to record medicines given at home.
Throughout the development of these resources, the research team demonstrated an outstanding commitment to co-production. The perspective and input of parents was sought throughout every stage of the research process, the team engaged with a wide range of parents through various methods, including interviews, focus groups, social media, e-surveys etc. The team’s dedication to co-production and engaging families in research secured their win of the PIER PRIZE 2024.
We spoke with Dr Louise Bracken (Co-Director of Paediatric Medicines Research Unit & Senior Research Pharmacist) and Andrea Gill (Senior Research Pharmacist & Principal Pharmacist Medication Safety and Governance) from the Paediatric Medicines Research Unit in Alder Hey Children’s Hospital in Liverpool, who led the PADDINGToN research team.
Louise and Andrea describe their programme, the value of involving children and young people in research and how the question, "what do you need help with?" led to great insight.
What was the motivation behind your study?
Dr Louise Bracken
We were aware of a long-standing problem with both the lack and inconsistency of medicines information provided to parents taking neonates home with numerous medicines. This is specifically the case for parents whose babies are cared for by multiple hospitals. I had discussed this with a colleague (Dr Fiona O’Brien, Senior Lecturer, School of Pharmacy and Biomolecular Sciences in Royal College of Surgeons of Ireland in Dublin) over a cup of coffee at a conference.
I then attended the Neonatal Paediatric Pharmacist Group Conference in 2019 where a neonatal parent, Rachel, shared her experience with her baby boy Hugo who had received care from different neonatal units and community settings. Rachel explained the need to better support parents giving medicine to their babies at home and her story resonated with me and with the rest of the audience. Rachel’s story so clearly outlined the need to improve medicines information resources and so after the conference, I literally chased after her into the car park and explained that we wanted to develop a funding application and really wanted it to be supported and co-led with parents.
Thankfully Rachel was happy to be involved and things took off from there, we had a Twitter campaign and were able to bring Julie (an Irish parent) on the team and together we took this forward and built our PADDINGToN team.
Different hospitals produce different resources. They take a lot of time and we thought this was an opportunity to standardise the process so that there is consistency in the information provided and we are not re-inventing the wheel in different places. Our goal was to ‘do it once and do it well’.
What does it mean to you to involve paediatric patients and families in the development and delivery of research?
It is essential, co-design in research is immensely beneficial. As a professional you may think you know the information people want or their priorities, but we found that by working with parents we were able to much better understand what they wanted and what their priorities were.
We found that the relatively simple question, ‘what do you need help with?’ can give such insight into what would be useful for parents.
What were your key takeaways from the study?
Communication is key! We found the type and amount of information parents wanted and when they wanted this differed. It is important to ask families what sort of information they want and when they would like this is really important. Healthcare professionals need to be flexible with both the information provided and timing of that information.
Also, it is so important to link in with clinicians and other practitioners, as a multi-disciplinary team so we work together to better support parents and families.
What does it mean to you and your colleagues to have won the PIER award?
We were thrilled and excited to win the award, it was definitely a huge team effort. As pharmacists it is also great to be recognised by RCPCH for this piece of work. Recognition of the study also provides external validation to the team for their hard work on improving resources for parents taking babies home on medicine.
Originally, we had in mind that this might help a few families, but it has gone way beyond that and our resources are being used by many units - this is a testament to the hard work of everyone involved and to the parents who have given us invaluable insights.
What motivated you to get into paediatric research?
Dr Louise Bracken
I started in Alder Hey in 2010 and had the opportunity to undertake a PhD which allowed me to pursue research further, and I was very fortunate to be supported along the way by some amazing mentors. There are now many more NIHR schemes offering pathways into research for different professions which is great to see.
Andrea Gill
I have only recently got into research formally, after working as a paediatric clinical pharmacist for over 30 years. Many questions we ask in our day to day clinical roles, such as why do we do this this way? can we change the way we do this? can turn into research questions and be used to promote positive changes and outcomes or understand things better. For me, realising this motivated me to want to do more research.
What are your plans for your research career?
We are currently working on PADDINGToN 2, a feasibility study looking at whether using the PADDINGToN resources on neonatal units reduces anxiety and helps parents be more confident about giving medicines at home.
Depending on the outcomes from PADDINGToN 2 and approval for further funding, we plan to set up PADDINGToN 3 which will be a randomised controlled trial building on from the feasibility study.
Our Paediatric Medicines Research Unit is also looking to build resources around helping children swallowing tablets and improving formulations of medicines for children.
There are lots of areas to pursue further research and we are taking opportunities where they present themselves such as NIHR Research Scholars Programme run by the NW Coast Clinical Research Network. We have an experienced team, we are always looking for the next thing, and this keeps the work enjoyable!
What advice would you give to aspiring researchers?
To take opportunities…say yes to opportunities to get involved in research. If you believe you can make a difference, you can probably make a difference! This was the thinking behind PADDINGToN the concept was quite simple but we didn’t expect it to have such a positive response. You can conduct a small project but it can be impactful. You can bring the day-to-day problems you face within your work and investigate them as a research project, often tackling the problem in bitesize chunks.
There are a lot more opportunities available now than there was previously, certainly for pharmacists. Research is not just about having a PhD but about having an inquiring and open mind and this coupled with the right opportunities, like appropriate funding, can set you up to become a researcher. Even a small pot of funding can help protect some time - look for hospital programmes to get involved with as these can be great stepping stones.
Work collaboratively with others. This can be so helpful in moving things forward. Senior clinicians are available and can offer support. Working within an MDT is everything and brings together many different perspectives to projects. Research is everyone’s business and having ‘buy in’ from colleagues helps.
When it comes to getting involved in research, it can be useful to think ‘What is the worst that can happen?’ You can try it and if you don’t like it, you can go back to your day job!