Patient and Public Involvement in Paediatric Clinical Research
The role of Patient Organisations and family engagement is vital to all aspects of paediatric clinical research. To understand the needs of patients and their families during a clinical trial it is essential that their wishes and contribution throughout all the stages are considered. This includes their consultation on the study design, proposal development, grant application, as well as the actual recruitment and delivery of the study.
GRiP facilitates the involvement of groups representing patients, parent and families in specific tasks. Parent representatives from different networks across Europe are invited to participate at the GRiP GRiP's Network Governing Council Meeting, where there is an opportunity for GRiP participants to hear their views on a range of topics that concern them as parents and which will inform the GRiP in defining priorities when compiling their proposals for patient engagement.
This page collects stories about paediatric patients (and their parents) who have been involved in clinical trials or other types of paediatric research, as told directly by them.
GRiP interviewed Wendy Cook, a parent representative from the Medicines for Children Research Network (MCRN) at the University of Liverpool. Wendy also presented at the GRiP Network Governing Council Meeting in Bilbao (October 2012) and provided feedback to the GRiP network.
Wendy Cook is a member of the Medicines for Children Research Network (MCRN) Nephrology Clinical Studies Group. She first became involved with MCRN activities as a parents representative after being approached by a nephrology consultant and researcher to join the Nephrology Clinical Studies Group.
Wendy’s son has had a very debilitating kidney condition, Nephrotic Syndrome and Focal Segmental Glomerulosclerosis (FSGS) since the age of five and is now aged seventeen, and his consultant felt that her experience of caring for her son would be very valuable to the group. She had also been involved in activities as a volunteer helping to raise awareness and as funding coordinator for pioneering research at Bristol Laboratories with the kidney charity ‘Nephrotic Syndrome Trust’ (NeST) www.nstrust.co.uk.
Wendy was very keen to learn and understand the whole process of research from the lab stage through to undertaking trials of medicine, whether it be medicine that has been used for some years, or new and innovative medicine to improve the health and quality of life for children. She feels it is vital to seek and find more effective medicine using the help, guidance and experience from parent carers and also children themselves. This contributes to the making of more successful trials and so consequently children will be more compliant taking medicine, whether it be short term while in hospital, or long term if they are chronically ill.
Wendy has been involved in the MCRN Nephrology Clinical Studies Group for the last four years and during the past two years she has been a member of the MCRN Study Assessment Committee which has helped her engage on the complexities of delivering good effective medicine and healthcare provision for children. This has also has enabled her to pass on practical knowledge to clinicians and pharmacists of ‘real life’ situations faced by children and their parents when administrating medicine. This includes issues around compliance, side effects and also actual involvement in clinical trials.
One of the many events that Wendy has taken part in, and one that has really stood out for her was the PrioMedChild (Priority Medicines for Children) www.priomedchild.eu/ conference held a few years ago in London. Many people attended this event including medics, pharmacists and parents of chronically ill children. She came away feeling everyone was genuinely wanting to improve paediatric medicine and dedicated to formulating new therapies to help our children.
Wendy considers it crucial that parents views are heard and taken on board as they are the ones trying their absolute upmost to help fight their child’s health condition or disease. If they, as parents don’t believe in the medicine prescribed by doctors, how are children expected to believe it will work for them? That also applies on how it is delivered too, therefore it is important to consult both parent and child for their views. It is vital to undertake good clinical trials to build up the evidence of the effectiveness of medicine, as many parents like Wendy, want to know the statistics and have full knowledge of the medicine they will administer to their child.
Wendy finishes by saying, “We are a more questioning society globally; we owe it ethically to generations of children yet to be born with health conditions to have the answers. That’s how I see it!!!”
Picture: Heather Bagley (left) and Wendy Cook (right), parent network representatives linked to GRiP, near the Guggenheim Museum during their visit to Bilbao