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Research is essential to advance the science of paediatrics and improve the health and well-being of children. Importantly, many of the determinants of poor adult health have their origins in early life. In 2012, the report ‘Turning the Tide’ from the Royal College of Paediatrics and Child Health (RCPCH)1 highlighted that the evidence base for child specific treatments was sparse. It was highlighted that only 5% of the annual UK public and charitable research expenditure was allocated to children, approximately £2.2 billion, which is equivalent to less than £10 per child per year.1 The report called for all those parties involved in research to come together to develop a national vision to ensure that child health research was given the same importance as adult research.1 The report made a number of recommendations including expansion of research posts, support for parents’ and young people’s advocacy, improved research training for paediatric trainees and collaboration between children’s research charities.1 Those recommendations were further emphasised in the report ‘A healthy nation: strengthening child health research in the UK’.2 This article highlights how collaboration between children’s research charities has been taken forward.
The United Kingdom Child Health Research Collaboration (UKCHRC) was formally launched in January 2015 at the Wellcome Trust following a series of workshops held earlier at the Medical Research Council (MRC). The UKCHRC is a partnership of funders of child health research (box 1). Administrative support is provided by the RCPCH. Meetings are held biannually at one of the charities’ headquarters. In 2016, the UKCHRC met at the British Heart Foundation and the Cystic Fibrosis Trust and in 2017 the meeting was at the British Lung Foundation. Each charity retains their own identity, not least because this is essential to their fundraising.
Box 1 Charities and funding bodies involved in UKCHRC meetings
Act for A-T
Action Medical Research
Association of Medical Research Charities (AMRC)
Arthritis Research UK
Brain Research Trust
British Heart Foundation
British Lung Foundation
British Scoliosis Research Foundation
Cancer Research UK
Child Brain Research
Child Liver Disease
Children with Cancer UK
Chronic Granulomatous Disorder Society
Crohn’s in Childhood Research Association
Cystic Fibrosis Trust
Diabetes Research & Wellness Foundation
Epilepsy Research UK
Fight for Sight
Great Ormond Street Hospital Children’s Charity
Juvenile Diabetes Research Foundation
Kids Kidney Research
Medicines for Children Research Network
Meningitis Research Foundation
Medical Research Council (MRC)
Multiple Sclerosis Society
Muscular Dystrophy Campaign
National Reyes Syndrome Foundation UK
Newlife Foundation for the Disabled Child
Niemann-Pick Research Foundation
National Institute for Health Research
Novo Nordisk UK Research Foundation
Nuffield Council on Bioethics
Royal College of Paediatrics and Child Health (RCPCH)
Scoliosis Association (UK) & British Scoliosis Research Foundation
The Brain Tumour Charity
The Institute of Clinical Research
The Lullaby Trust
Tuberous Sclerosis Association
World Cancer Research Fund
It was agreed at the outset that an advantage of such a collaboration was networking and a greater shared understanding of the generic problems of research involving infants, children and young people. A RCPCH survey in 2015 demonstrated the problems included the limited time in paediatrician’s job plans dedicated for research, the low proportion of paediatricians with previous extensive research experience, that is they had a PhD and supervised PhD students and the low number of consultants having authored a publication in the last 2 years or having a current grant.3 Respondents stated they were unaware of funding opportunities. It was felt that UKCHRC had the potential to act as a focal point for accessing research opportunities for young researchers; from this grew the research funding database established by the RCPCH. It is an online database of information on more than 150 research funding opportunities and gives details of the types of funding available from large and small charities. The UKCHRC was consulted during its development and facilitate its updating as new funding opportunities arise. Currently, the database is available to all RCPCH members via the RCPCH website, but there are plans to expand this to all those involved in child health research.
Furthermore, at the workshops held at the MRC, it was suggested that UKCHRC could lead to increased coordination across the research cycle. For example, it was agreed smaller charities could play an important role in funding small projects which generate preliminary data to support applications to the larger funders such as MRC, National Institute of Health Research (NIHR) or the Wellcome Trust. The RCPCH has established a Children’s Research Fund to support research training fellowships and clinical scientist and career development awards. UKCHRC has also helped to increase research capacity. The MRC recently signed a joint funding agreement with the RCPCH and fellowships will be advertised annually. The MRC was already working with a number of UKCHRC members including Sparks, Fight for Sight, Cystic Fibrosis Trust, Epilepsy Research UK, Juvenile Diabetes Research Foundation and the Brain Tumour Charity to jointly fund clinical research awards. At UKCHRC meetings, the MRC has expressed their willingness to create more joint funding initiatives with other charities. Children with Cancer UK fund studentships and project grants. In 2016, through UKCHRC they approached the RCPCH for help to reach the wider paediatric community. The ensuing three cobadged Children with Cancer UK and RCPCH clinical studentships attracted very high-quality trainees. Children with Cancer UK reported this success, which will be an ongoing collaboration to the UKCHRC members. The RCPCH indicated their willingness to support other charities to recruit research students.
During the UKCHRC workshops, several challenges in involving infants, children and young people in research were surfaced. Ongoing evidence of poor practice and communication that could be improved was reported, for example, the lay summaries of grant applications and age appropriate research information sheets. It was noted that some researchers find it difficult to access or connect to groups of young people. Hence, focus group sessions with families during the ‘Turning the Tide’ work and subsequently with young people has led to development of the Infant, Children’s and Young People’s Research Charter.4 The Charter provides a framework for those involved in child health research and gives guiding principles for the active engagement of children, young people and families in research. The Charter is accompanied by guides, one on ‘what you need to know’ and the other lists external resources and useful links. The involvement of UKCHRC members gave the important perspective of the child health research funding community and helped sign posting of key resources to aspiring and existing child health researchers.
It was also recognised that clinical research training programmes will have limited long-term impact if there is no paediatric consultant capacity to support research. The subsequently published RCPCH survey5 highlighted the declining numbers of paediatric consultants with an academic contract. UKCHRC concluded it would be important that every paediatrician should have some experience and training in research. A pilot of training in research skills was, therefore, developed and led by the British Association of Perinatal Medicine, in collaboration with the RCPCH, the NIHR Neonatal Clinical Study Group, the Neonatal Society and the Bliss charity.6
At the meetings of UKCHRC, issues relevant to all of the funders are discussed. For example, agenda items at the last two meetings included research capacity in child health, collaborative opportunities, patient and public involvement in research, support of medical student research activity and patient registries. At each meeting, the partners provide updates on their work including a standing item on the NIHR Clinical Research Network. A number of the NIHR Clinical Studies Groups are supported by charities involved in UKCHRC.
There remains limited public awareness of the research process and what it means to participate in research. UKCHRC could have an important role in this area. UKCHRC could also facilitate international collaboration. Indeed, there has already been international interest in UKCHRC from CureKids, New Zealand’s leading charitable funder of child health research.
We thank all members of UKCHRC for the ongoing support of child health research and Mrs Deirdre Gibbons for secretarial assistance.
Contributors NM identified the need for a collaboration of research funders. AG and MJ have supported its development. NM led the establishment of joint RCPCH-MRC training awards. AM led the creation of the funding database and LH the development of the Infant’s, Children and Young People’s Research Charter. All authors were involved in the production of the manuscript.
Competing interests None declared.
Provenance and peer review Commissioned; externally peer reviewed.
Data sharing statement The data can be open for sharing if required.
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