UCLPartners is both an Academic Health Science Centre (AHSC) and Academic Health Science Network (AHSN). Both our AHSC child health programme and AHSN children, young people and maternal health programme aim to improve the health outcomes of of the 1.34 children living in the UCLPartners geography. The AHSC programme supports activities to integrate research, education and clinical care whilst the AHSN programme focuses on improving the delivery of care and prevention of ill health.
Child health programme (AHSC)
Promoting the health of children lays the foundation for good health throughout life. Treatments have transformed illnesses, once fatal in childhood, to chronic conditions. However, the cause of many illnesses is still unclear and the treatments available are sub optimal.
This programme is built around the close partnership between Great Ormond Street Hospital (GOSH) and UCL Institute of Child Health (ICH), who together form the largest grouping of biomedical research dedicated to children, outside North America. The programme also involves participation from across UCLPartners.
Work within the programme is focussed on six areas:
- Genetics and genomic medicine
- Developmental biology and cancer
- Developmental neurosciences
- Infection, immunity and inflammation (III)
- Population, policy and practice
The child health programme has three workstreams:
- Adding value to the National Institute of Health Research (NIHR) and Department of Health-funded networks and centres for child health
- Delivering a future-focused academic and clinical vision to improve the health of children with rare diseases
- Partnering across the UK to enhance child health research
Adding value to the NIHR and Department of Health-funded networks and centres in child health
The Academic Medical Centre provides leadership and oversight on the integration of activities across:
- NIHR GOSH Biomedical Research Centre (BRC)
- NIHR Clinical Research Network (CRN) North Thames
- NIHR Collaboration for Leadership in Applied Health Research and Care (CLAHRC) North Thames
- UCLPartners Academic Health Science Network (AHSN)
In doing so, we aim to enhance the understanding and sharing of resources to improve the overall quality and impact of child health research and clinical care. Through these networks and centres, our objective is to stimulate value-added activities for child health research and collaborative clinical care by identifying new opportunities for innovation and better patient outcomes, eg: in epilepsy as an exemplar condition.
Improving the health of children with rare diseases
The Zayed Centre for Research into Rare Diseases in Children is a partnership between GOSH, UCL and the Great Ormond Street Hospital Children’s Charity. The centre will bring hundreds of clinicians and researchers together in a state-of-the-art facility to drive forward new treatments and cures for children with rare diseases. Once completed, it will welcome approximately 400 academics and clinical staff and feature over 150 laboratory bench positions. The outpatient facility will accommodate more than 200 patients and accompanying family members at any one time.
Progress to date
The new Zayed Centre for Research into Rare Disease in Children is scheduled to open in 2018. Work is underway to finalise the academic vision for the centre, ensuring it is closely aligned with the rare diseases strategies of all three partner institutions.
Moving forward, the programme will continue to encourage support from world renowned medical charities to help fund the crucial work of this centre.
UK partnership to enhance child health research
The programme facilitates collaboration with other academic health science centres to ensure that Child Health Research and Education is prioritised across the UK. One example of where this has been achieved is through the Genomics England Ltd 100K Genomic Medicine Centre and Clinical Interpretation Partnerships.
Since 2010, the GOSH Centre for Translational Genomics (a National Institute for Health Research Biomedical Research Centre) has facilitated the discovery of new genes in rare genetic diseases, uncovering the underlying genetic cause of various disorders.
This workstream aims to build on the activities of this centre by gathering and utilising personal sequence data, developing tools to integrate electronic health records with genome data (in collaboration with the Farr Institute), enabling clinical interpretation of genomic data and developing strategies that inform therapeutic decisions.
Progress to date
Led by GOSH, seven NHS trusts form the North Thames Genomic Medicine Centre (NTGMC). The centre delivers the 100,000 Genome Project, which aims to contribute to developing more effective treatments for cancer and rare conditions.
The NTGMC opened in March 2015 and aims to deliver 14,000 genomes (40% cancer) over a three year period. This pioneering study supports the delivery of more personalised diagnosis and targeted therapy for patients. 2,000 people with rare diseases have now been recruited to the study and recruitment is about to commence to the cancer arm of the programme.
Professor Rosalind Smyth, Programme Chair, Child Health AHSC
Children, young people and maternal health programme (AHSN)
The all-cause mortality rate for children aged 0-14 years in the UK has moved from the average to amongst the worst in comparable European economies, with 26% of children’s deaths showing an ‘identifiable failure in the child’s direct care’. Some of the worst inequalities in mortality and morbidity outcomes are right on our doorstep. It is this negative trend that our children, young people and maternal health (CYM) work seeks to improve.
Our partners are focused on improving the delivery of healthcare for children and preventing ill health in the first place. Our projects and programmes use the channels of education and training, evaluation, quality interventions and IT to help all the different providers of child healthcare – from local authorities to tertiary hospitals – work together to improve health outcomes for children.
- Decrease mortality and morbidity for the 1.34 million children in our geography and beyond
- Improve the life chances of children under 19 years
- Promote better health and wellbeing
- Children, young people and maternal health intelligence platform
- The London Neonatal Network
- Long-term illnesses
Children, young people and maternal health intelligence platform (CHIP)
Overview and aims
UCLPartners has created an intelligence platform that presents data to local boroughs and clinical commissioning groups (CCGs) illustrating the health needs of the population aged 0-25 years and providing recommendations to improve health outcomes for the population.
The platform aims to:
- Promote a whole system approach by highlighting any fragmentation in pathways between primary and secondary care
- Support the fast-paced environment of commissioning and provide a baseline for improvement throughout the commissioning cycle
- Ensure there is no duplication or overlap of data activities by experts working with children and young people across London.
Progress to date
As part of a North West London Consortium contract, UCLPartners has been contracted by the Anna Freud Centre to complete a needs assessment of mental health in eight boroughs in north west London using Mental Health Intelligence Platform technology, which CHIP is based on.
The London Neonatal Network
Overview and aims
The London Neonatal Operational Delivery Network (ODN) brings together clinical expertise and the input of patients to provide specialist resources. UCLPartners hosts the London Neonatal ODN on behalf of NHS England. The network focuses on operational delivery and aims to:
- Ensure the delivery of safe, high quality and equitable neonatal services across the patient pathway
- Focus on the principles that support ‘Right Care’ to manage the right patient in the right place as close to home as possible
- Improve cross-organisational, multi-professional clinical engagement and patient/carer engagement to improve patient experience and outcome.
Progress to date
A regional neonatal nursing workforce strategy has been developed to support trusts to attract, train and retain high quality specialist neonatal nurses.
The London Neonatal Quality Dashboard has also been developed. The dashboard monitors the number of women who deliver at less than 30 weeks gestation and receive magnesium sulphate, which has shown to have neuroprotective factors and prevent cerebral palsy following preterm birth.
The use of a regional cot bureau is currently being piloted. This aims to reduce the time taken to transfer critically ill neonates and keep mothers and infants together.
Work is underway on creating a regional standardised prescription for total parenteral nutrition (TPN) (intravenous nutrition). The aim of this is to improve levels of nutrition received by neonates and increase the efficiency of pharmacy teams.
Overview and aims
We aim to support networks of practice and Darzi Fellows to improve commissioning and access to appropriate care for children and young people with long-term conditions including epilepsy, asthma, and diabetes.
Progress to date
The UCLPartners North London Asthma network, coordinated by Dr John Moreiras at Whittington Health NHS Trust, brings together clinicians and allied professionals to improve the pathway of asthma care. The aim is to make asthma care more accessible and prevent avoidable deaths.
A Darzi fellow has been appointed for 2015/16 to lead innovations in service specification and delivery starting with roll out of the asthma kite-marking scheme in schools – a scheme to train teachers to prevent and treat asthma more effectively.
This is a collaborative initiative between NHS England, UCLPartners and Whittington Health NHS Trust.
UCLPartners has worked closely with Young Epilepsy and the UCL Institute of Child Health to continue support for a Darzi Fellow in epilepsy to bring together leading clinicians working to integrate services and improve outcomes for young people with epilepsy.
Following a grant from NHS England, Young Epilepsy created this short video to celebrate the involvement of young people with epilepsy in their care and to consolidate findings from the Darzi Fellowship for more integrated care.
Overview and aims
UCLPartners has supported the implementation of i-THRIVE, a major service transformation for child and adolescent mental health services (CAMHS).
i-THRIVE is a new model of care for the 710,000 children and young people affected by mental health difficulties nationally. It is an integrated, person-centred and needs-led approach to delivering mental health services, allowing children, young people and their families to be directly involved in their care.
Perinatal mental health value scorecard
UCLPartners successfully developed and tested a perinatal mental health scorecard – which aims to improve outcomes for 0-5 children and their families – with four partner organisations.
Our recommendations include refining, upscaling and evaluating the scorecard; evaluating its effectiveness as a QI tool; carrying out further work on the value of the scorecard; and providing capacity to spread the methodology to other areas of healthcare.
Start at the beginning
UCLPartners determined the feasibility and efficacy of a nutrition and lifestyle digital intervention in improving preconception health in women planning a pregnancy. We provided key data to design a definitive trial of a preconception intervention to improve pregnancy and birth outcomes.
We identified opportunities for the dissemination of project activity; additional organisations have learned of and prepared implementation of DIY Health type models; project documents are now available on national platforms.
DIY Health: Co-producing solutions for minor ailments
UCLPartners refined, upscaled and evaluated the DIY Health (0-5) model. Our overarching aim was to empower parents with the skills, knowledge and confidence to seek help at the right place and time.
We developed a DIY toolkit training package to be widely disseminated. The DIY Health pilot study involved two iterations of 12 weekly 2-hour sessions at two delivery sites. Cohort 1 sessions were conducted September to December 2014 while cohort 2 sessions were conducted January to April 2015. Parents reported improved skills, knowledge and confidence in managing their children’s health.
Monica Lakhanpaul, Programme Director, UCLPartners
Jenny Mooney, Head of Programmes, UCLPartners