What do we mean by public involvement (PPI) in research?
For us it means that we involve women, families and their representatives in our research as members of the team throughout the research process, from the development of research ideas and questions, through funding applications, membership of project steering groups, the development of study resources, and the interpretation, writing up and dissemination of findings.
The National Perinatal Epidemiology Unit (NPEU) has a strong track-record of Patient and Public Involvement (PPI) in research. Since 1990, the NPEU has established a network with over 60 national and regional support groups and charities, involving hundreds of individual volunteers and representatives.
Jenny Kurinczuk, Director of the NPEU, describes the importance of involving parents, patients and the public in NPEU research: "The views of parents and patients have been invaluable to every aspect of our research from identifying the important questions research needs to address through to helping us share our findings in ways that mean they reach the broadest audience. Their perspectives ensure that we answer questions of real concern to families around the time of birth and early childhood, rather than simply focusing on the issues we and clinicians think are important. Our PPI stakeholders also ensure that our results reach those who might be affected by our findings, and that we get those messages across clearly. For example, we now make greater use of infographics and social media to summarise our findings in ways that are simple but still have impact and will, we hope, reach the people who matter."
Examples of parent, patient and public involvement
"I love NPEU’s focus on pregnancy and childbirth, and have so much respect for how they involve user representatives in their work. I was so nervous before my first project meeting, back in 2008, but everyone there made me feel very welcome and that my views and experiences were an integral part of what was a really major piece of research. My involvement with that project has led to me joining other research groups and also becoming a member of staff at NCT (National Childbirth Trust) where I look after the charity’s research collaborations and recruit and support more user reps."
Jenny McLeish is a qualitative researcher and PPI champion working on our Policy Research Unit interview-based studies looking at perinatal peer support, volunteer doulas and the maternity experiences of women facing multiple disadvantages. As part of these projects, we have worked with 14 voluntary sector organisations that support families in the transition to parenthood.
"The co-ordinators of these community organisations have all been key partners in making the research happen. They have been generous with their time, ideas and enthusiasm, helping us to understand the issues and shaping the subsequent interview topics. They have also had the vital role of trusted intermediaries, introducing us to their volunteers and the families they support. These families have had a baby while dealing with challenges such as poverty, homelessness, HIV, disability, mental illness, detention and imprisonment, domestic abuse, involvement with safeguarding, recent migration, and the asylum system. Working in partnership with community organisations has thus enabled us to reach and highlight the experiences of vulnerable families who have every reason to be distrustful of outsiders. For me, this partnership approach to research is not an add-on – it’s simply how you do good quality research, especially with harder-to-reach communities."
"My name is Jo Shepherd and I am the mother of a 9-year old daughter who had serious medical and surgical complications in the first few months of life and lives with ongoing consequences of losing much of her intestines as a baby. Having worked in commercial drug research for many years, I am familiar with the concept of clinical trials and was keen to get involved. I knew that my daughter's medical case was unusual, so I was encouraged to know that there were researchers working in this area. I was initially approached by the surgical nurse at my daughter's hospital who asked if I would present at a paediatric surgical conference about the practical implications of living with my daughter's condition and managing her care. Long term prognosis in this area is relatively unknown and lifestyle consequences for children are numerous, including managing stomas and/or central lines and overnight intravenous drips. One of the members of the BAPS-CASS research team was in the audience at my presentation and invited me to join the parent advisory group.
As a member of this group, I have been able to meet further members of the team, including Marian Knight. I have attended several meetings in Birmingham, where I have felt able to participate in shaping the research questions, adding input to the questionnaires sent to surgical teams; ensuring important research variables are captured, supporting applications for study funding and generally adding a parent/patient viewpoint. I was also asked to become a lay member of the steering group which I attend via teleconference 2 or 3 times per year. These meetings provide an update on progress of data collection and study publication and allow us to resolve any issues which arise during the study period. On a personal level, I have gained a lot from my participation. As a parent, I am heartened to know about the research and to be involved is a privilege. There is certainly a cathartic element for me to be able to participate and I find the work which is being performed very interesting."
"I became involved with the NPEU Clinical Trials Unit when as a lay member of my local Research Ethics Committee I was asked to be a Patient and Public representative on the Baby Oscar Trial. I support facilitating good medical research and wanted to make use of my expertise and knowledge gained from my recently completed Master’s Degree in Research Ethics.
I try to help the researchers put themselves in the shoes of the parents whose babies are involved in the research and see things through parental eyes. I also contribute to the information given to parents such that it is in good plain English, not medical terminology, so that it is clear and easily understood. In these ways I hope to make my involvement as a PPI representative in the research effective and useful."
"My name is Clare Lambert and I am a working mum of 2 children, both boys. Our eldest son was born in 2011 and after 8 very difficult months he was diagnosed with Hirschsprungs disease when he was admitted for what was initially a medical emergency. He had a pull-through a month later and although life with Hirschsprungs still has its ups and downs, he has gone from strength to strength. His age meant he met the criteria for the BAPS-CASS study into the disease and we were invited to participate. Since then, my husband and I have taken part in parent interviews for the Healthtalk.org website as well as being active parent members of the BAPS-CASS steering committee. We try to bring a more holistic outlook to the study; a reminder that the conditions and treatment pathways being studied have an impact on real people, their families and their daily lives. We have found that it has expanded our own support network, but more importantly it is a really good way of turning our experience into something positive which we hope will help other patients and their families in future."
My name is Justine Pepperell and my involvement with the NPEU started whilst Family Support Manager at BLISS, the charity for premature and sick babies. My daughter was very small for dates and spent 10 weeks in neonatal care so I understood and empathised with parents, like me, whose vision of and plans for their baby’s birth was so very different to the reality of days, or sometimes weeks, spent in hospital. BLISS was asked by the NPEU o become involved in a clinical trial identifying optimal oxygen saturation levels for premature babies and nominated me.
I have now been involved with three clinical trials as a representative on the Trial Steering Committee and more recently on the Co-Investigators Group. I have found each of the clinical trials fascinating, although very different, and my involvement has varied according to the complexity of the trial and the challenges encountered. Each group has welcomed and actively encouraged participation of the user representatives and I found the meetings interesting and enjoyable although sometimes challenging as it was outside my usual set of skills and expertise. I don’t have any clinical training but have always felt comfortable raising questions or asking for clarification and other members of the group have been patient in explaining clinical terminology and indeed statistical information. I have attended meetings on average between 2-3 times a year.
I have learnt a tremendous amount over the years which benefitted me at a professional level at BLISS, and continues to benefit me even though I have now moved jobs and am working in a hospital Trust. I believe that parents have a vital role to play in clinical trials to ensure that the views of the parents are represented and that the Trial is properly accessible to all those parents participating. I think it was beneficial to provide comments on parent information to ensure information can be easily understood. Our presence reminds clinical staff of the human dimension of the clinical trial, so the perspective of the parent and baby remains central to decisions about how the trial is designed and develops over time. As the parent of a premature baby it has been very satisfying to be able to give something back which will benefit those babies needing neonatal care in the future.
We would like to thank our PPI representatives for all their support and commitment. We are very proud of our PPI network’s achievements which have been invaluable in our research to improve the quality of care and health of mothers, babies and families.
If you would be interested in joining our network as a PPI representative, or finding out more about it, please contact the NPEU PPI team at: NPEUPPI@npeu.ox.ac.uk
For further information about Patient and Public Involvement (PPI) please visit the INVOLVE website: http://www.invo.org.uk/