Integrated Research Strategy - Alder Hey Children`s Hospital

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ALDER HEY CHILDREN’S NHS
FOUNDATION TRUST
INTEGRATED RESEARCH STRATEGY:
2012 – 2022
January 2012
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
Foreword
This new research strategy aims to place Alder Hey in the best possible position to achieve
its corporate vision of being ‘one of the recognised world leaders in children’s research and
healthcare’. The strategy is ultimately designed to lead to improvements in the care for and
health of children. The strategy has been constructed with the input of our key partners,
including the University of Liverpool.
The Trust has seen its research performance, quality and reputation improve significantly
over the past five years and has demonstrated it can successfully respond to an ever
changing research environment. Areas of research excellence have emerged, and it is clear
that with support and investment these can flourish and become internationally important.
The intention now is to build on these areas of expertise and success while nurturing
themes that have the potential for research excellence.
Achieving the aims set out within this strategy needs commitment, support and
accountability throughout our organization including the Board and Governors, our senior
clinical and clinical academic leaders and managers, our researchers, healthcare
professionals and all staff. The focus is on how we can accelerate our research growth
working in partnership with our academic collaborators and charitable funders. It will only be
possible if we support, encourage and engage with the children and families without whose
participation advances and discoveries could not be achieved.
Professor Ian Lewis, Medical Director
Dr Matthew Peak, Director of Research
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
Integrated Research Strategy
1.
Purpose
This strategy is one of the Trust’s four linked strategic pillars aimed at guiding us
through the next 5-10 years. Its purpose is to define the necessary requirements for
Alder Hey Children’s NHS Foundation Trust to place research at the centre of its
vision of being ‘one of the recognised world leaders in children’s research and
healthcare’. This strategy needs to be viewed alongside the R&D and corporate
strategies of existing and potential partners and within the context of national and
international initiatives.
The objective is for our research to result in significantly improving health or
healthcare outcomes for children and young people.
What must we achieve?
 Alder Hey becomes a recognised international centre of excellence for
children’s healthcare research through accepted objective measures
 Regional, national, and international institutional partnerships which enhance
the very best translational and applied clinical research.
 A recruitment strategy that will attract the best researchers internationally
 A shared vision with the Alder Hey Charity for investment in research which
benefits children’s health and well-being in Liverpool and beyond
 Develop state of the art research accommodation and facilities as part of the
Children’s Health Park to enhance research reputation and performance
 Ensure a robust internal governance and funding infrastructure for research
which facilitates growth and expansion
 Each patient and family offered the opportunity to take part in research
 An optimal experience for children and their families who participate in a
research study
 Engage the children and families who use services at Alder Hey and the wider
population to continually refine our research plans

Develop the full potential of the expert multidisciplinary workforce within Alder
Hey to lead and contribute to research based knowledge in child health care
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
2.
Context
a) The Need to Improve Children’s Health
Children and young people aged 0-18 years comprise 20 - 25% of the UK total
population and are more frequent users of health services than adults. All children
access health services for health checks, immunisations and assessment when
acutely ill. Typically, pre-school children see their general practitioner six times each
year, up to half of infants attend A&E and about 16% of children attend hospital in
any one year. Two per cent of children have a chronic, life threatening condition.
One in ten children has a recognised behavioural or mental health disorder.
Outcomes for children and young people remain poor in the UK in comparison to
elsewhere in the developed world and outcomes in the North West tend to be worse
than elsewhere in England. Mortality from cancer in children and young people and
measures of diabetes control are poorer in the UK than in most of Western and
Northern Europe. Suicide rates in young people are higher than other countries.
Acute asthma admissions are highest in the North West. The need for greater
understanding of childhood diseases and the requirement for new treatments are
paramount. Alder Hey provides a wide range of healthcare services for children and
young people and offers an unparalleled opportunity to deliver the highest quality
research.
Elsewhere across the globe the need to improve children’s health, quality of life and
living conditions is unquestionable. Each year around three million children under the
age of five die due to environment-related diseases. Acute respiratory infections
annually kill an estimated 1.6 million children under the age of five. As much as 60%
of acute respiratory infections worldwide are related to environmental conditions.
Diarrhoeal diseases claim the lives of nearly 1.5 million children every year. Eighty to
90% of these diarrhoea cases are related to environmental conditions, in particular,
contaminated water and inadequate sanitation. Nearly one million children under the
age of five die of malaria each year. Up to 90% of malaria cases are attributed to
environmental factors.
High quality research is essential and fundamental for the health and well-being of
children both in the UK and internationally. Few centres can provide the access to
large numbers of children and their families at home and abroad with the necessary
clinical, academic and methodological expertise to make a global impact on
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
children’s health. It is the ambition of Alder Hey and its partners to be recognised
within this elite group.
b) NHS Context
There is an increasing requirement for NHS organisations to maximise research
leadership, participation and outputs as a core part of sustainable business models,
organisational reputation and identity. High-level research objectives are embedded
within the NHS Operating Framework which contributes to the overall performance of
NHS organisations. Specialist NHS Trusts are ideally placed to operate in a defined
market and contribute to the economy of UK plc.
In order for research to flourish and benefit the health of the nation it must be
organised along commercial principles. Within the NHS, the National Institute for
Health Research (NIHR) provides the highest quality research funding that defines
research intensive NHS Trusts: NIHR funding comprises infrastructure (Research
Units and Clinical Research Networks [CRN]), programme and project awards. Only
the most credible partnerships of NHS organisations and academic partners can
attract NIHR awards. In addition, research funding is available through Medical
Research Charities requiring the input of high quality academic partners.
The Government and the Department of Health have placed great emphasis on the
need for the NHS to link with the commercial sector in research and innovation, both
to transform patient outcomes and to support economic growth through the life
sciences industries. The promotion and development of the NHS and its individual
Trusts as partners for the commercial sector is an essential component of the
Strategy for UK Life Sciences.
The organisation of research within the NHS is broadly:
i) Original investigator led research – clinical and applied research for which a NHS
clinician (or honorary clinician) is the lead investigator. Examples include NIHR
awards in medicines-related research and clinical trials where the Chief
Investigator is based at Alder Hey and supported by an appropriate Clinical Trials
Unit.
ii) Participatory research - recruitment to multi-centre research studies led from
elsewhere, including national and international commercial or non-commercial
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
studies and clinical trials. Increased participation and recruitment to NIHR CRN
studies is a national high level performance objective.
iii) Facilitative Research – effective research delivery mechanisms are an
increasingly important measure of research excellence. The NIHR CRNs are
fundamental to this and provide both essential infrastructure and prestige for
research intensive NHS Trusts.
c) Research Partnerships
Alder Hey has strong collaborations with a number of Higher Education Institutions
across a number of sub-specialty areas through clinical / translational research,
conducted locally, nationally or internationally, principally led by clinical academics
with honorary status at Alder Hey or through research teams involving collaboration
between the Trust and an academic institution(s). This includes both basic science
and applied clinical research. Some research programmes involve multiorganisational collaboration, and this can be further improved with refinement of the
research strategy. These include:
i) University of Liverpool (UoL): Institute of Translational Medicine, Women’s and
Children’s Health - Rheumatology (Beresford), Respiratory (Smyth, Southern,
McNamara, Semple), Infectious Diseases (Carrol), Oncology (Pizer, Losty,
Jesudason),
Surgery
(Losty,
Jesudason),
Secondary
Research
(Smyth,
Williamson); Molecular & Clinical Pharmacology – Pharmacovigilance (Smyth,
Pirmohamed, Peak, Williamson), Pharmacogenetics (Smyth, Pirmohamed);
Cellular and Molecular Physiology – Stem cell consortium (Kenny); Biostatistics
(Williamson, Gamble). Within the Institute of Psychology, Health and Society,
Division of Psychiatry there is a strong focus on perinatal depression and
international child health (Rahman). In addition, the other four University
Research Institutes (Ageing and Chronic Disease, Infection and Global Health,
Integrative Biology and Population, Community & Behavioural Sciences) afford
unparalleled
opportunities
for
development
of
interdisciplinary
research
collaborations
ii) Liverpool John Moore’s University (LJMU): Key collaborations are within Sports
and Exercise Sciences (Stratton, Barton), Pharmacy & Biomolecular Sciences
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
(Ford, Nunn, Peak), Computing and Mathematical Sciences (Lisboa), Nursing
(Tume).
iii) University of Central Lancashire: School of Nursing & Caring Sciences - Nursing
Practice Research (Carter, Sanders);
iv) Lancaster University: Division of Health Research - Palliative Care (Brook),
Mathematics and Statistics (Lancaster).
v) Chester University: Faculty of Health and Social Care – Diabetes (Cooper),
Psychological Trauma (Lwin).
vi) Edge Hill University: Faculty of Health – pre-surgical information needs (Bray).
d) Liverpool Health Partners (LHP)
In 2011, the UoL and six NHS partners (including Alder Hey) formally signed up to
the implementation of an Academic Health Sciences System - Liverpool Health
Partners (LHP). This partnership is intended to fulfil the three intertwining functions
of clinical services, research and education with the aim of ensuring that medical
research breakthroughs lead to direct clinical benefits for patients. One of the key
elements in achieving this aim will be a small number of clinical academic
programmes. These are focused areas of clinical care and research where Liverpool
is known to be internationally excellent. The second criteria for clinical academic
programmes relates to the partnership having patient groups and clinical services,
which will support translational research in these areas. The proposed clinical
academic themes (Pharmacology, Oncology, Musculoskeletal and Infection) all
include areas of existing strength within Alder Hey and will therefore provide areas of
focus for internal strategic development within the context of the LHP framework.
LHP will also provide a vehicle to consolidate the existing and strong research
partnership with Liverpool Women’s NHS Foundation Trust (LWFT) in the field of
neonatal medicine.
Underpinning LHP will be the Joint Research Office (JRO), which will facilitate the
transfer of best practice in research governance between partner organisations,
adopting common processes and procedures that will reduce to a minimum the time
taken to initiate partnership research. The JRO will also enable Alder Hey and its
partners to react swiftly and strategically to calls from our principal funders.
e) The North West Context and Beyond
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
The North West has some of the most deprived areas in the UK which contributes to
poor health outcomes within the region. In Liverpool and Manchester, the North West
has two large tertiary paediatric healthcare providers providing the platform for
national and international strength in clinical and academic paediatrics. It is essential
that across the North West footprint there is collaborative working to ensure that
areas of complementarity are identified and agreed alongside areas in which each
centre can take the lead. The Liverpool/Manchester Child Health Concordat for
clinical services will be supported by a joint framework for collaborative working
promoted through the respective Academic Health Science Networks in each region.
Developing this partnership offers the potential for a robust research framework
based in the North West and aimed at securing early patient benefit for our relatively
deprived populations.
Increasingly, successful research is dependent on wider collaborations nationally or
internationally. Alder Hey has informal links with a number of organisations in the
developed and developing world that would benefit from more formal links. These
will be expanded further in our evolving international strategy.
f) Internal Context
In the past few years, there has been considerable growth in applied clinical
research at Alder Hey demonstrated by a number of measures:
 Increase in research activity – over 7,000 children and young people have been
recruited into NIHR portfolio studies since 2006: within the top decile of NHS
trusts in England and the highest of any children’s NHS Trust in the UK, as
published in the NIHR/Guardian Newspaper Clinical Research Zone.
 Increase in NIHR income – 15 NIHR Programme, Project and Infrastructure
awards totalling over £15m.
 Development of research networks – Alder Hey is the lead centre for the NIHR
Cheshire, Merseyside & North Wales MCRN Local Research Network and Nonmedicines Paediatrics Speciality Research Group, the highest recruiting networks
of children and young people to research studies in England.
 Research Business Unit (RBU) – the RBU has been in place at Alder Hey since
2008, providing the operational and business platform for the management of
research activity and integration with clinical business units.
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
 Opening of a Clinical Research Facility (CRF) in 2011, offering the opportunity for
studies in experimental medicine (EM) in children and young people.
g) Financial Context
An increase in research activity and growth has led to an increase in direct research
income to Alder Hey in the past four years. Current direct research income at Alder
Hey is approximately £3.5m per annum. This comprises income from NIHR
programmes and projects (26%), NIHR CRN infrastructure (38%), NIHR Flexibility &
Sustainability Funding [FSF] (18%), Association of Medical Charities (5%), Alder Hey
Charitable Trust (7%) and the commercial sector (6%).
However, in order to realise the objectives set out in this strategy document, direct
research income needs to increase by an order of magnitude. The requirement for a
shared vision with the Alder Hey Charity Trustees for deployment of publically raised
funds is essential. This, alongside competitively awarded and infrastructure funding,
will be a fundamental component of the implementation strategy.
In collaboration with key academic partners, it is essential that robust financial
framework and transparent governance processes are in place so that research
income is distributed and its use optimised to support both internal and collaborative
research initiatives.
h) Children’s Health Park (CHP)
In order to fulfil the potential of talented researchers and clinicians and reward the
generosity and dedication of the children and families we serve, Liverpool requires
world class facilities to stimulate productive interaction at home and abroad, attract
the best individuals and develop the child health research leaders of the future.
Within the CHP, a new Research & Education Facility will provide a legacy with
global reach for children’s health of both a landmark institution and human capital.
The facility will be a component part of the research strategy and requires future
proofing so that physical expansion in line with the strategic intent can be achieved.
i) Summary and Implications for Alder Hey
In recent years, Alder Hey and its partners in Liverpool have developed a strong
research portfolio in child health. With the development of LHP, it is imperative that
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
shared strategic intent, commitment and resources are mobilised to ensure that the
potential is realised for Liverpool and the CHP as an internationally recognised
centre of excellence for research into children’s health and well-being. This bold
ambition can only be realised through a coherent strategy shared between Alder
Hey, its academic partners, the Alder Hey Charity and the patients and public of
Liverpool and beyond.
3.
Vision & Strategic Objectives
3.1 The Trust’s vision is
“To build a healthier future for our children and young people as one of the
recognised world leaders in research and healthcare.”
This vision is supported by seven strategic aims:

Be the provider of first choice for children, young people and their families

Ensure all of our patients and their families have a positive experience whilst in
our care

Deliver clinical excellence in all of our services

Ensure our staff have the right skills, competence, motivation and leadership to
deliver our Vision

Be a world class centre for children’s Research and Development

Further improve our financial strength in order to continuously invest in services

Have a World Class facility to deliver world class care
The key research strategic objectives are:
 To have a major beneficial impact on the lives of children and young people
 Support, consolidate and build on existing research strengths and excellence at
Alder Hey
 Strengthen and develop robust strategic partnerships with key partners directed
at producing translational research that is world leading / internationally excellent
in terms of originality, significance and rigour conducted in an environment of
excellence in healthcare research.
 Target robust recruitment of high achieving, internationally competitive leaders of
paediatric research
 Develop talented clinicians and scientists with potential and invest in them to
support growth into world-class research leaders.
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
 Establish Alder Hey as a competitive, major recruitment centre for national and
international paediatric clinical trials
 Guarantee an organisational culture in which research is recognised by
healthcare professionals as a fundamental component of daily activity
 To maximise the enormous potential created by the new Children’s Health Park
programme
 Nurture proactively a symbiotic relationship with the Alder Hey Charity
 To develop and promote new areas of research in line with the Trust’s clinical,
business and quality strategies.
 To have governance and financial mechanism(s) to identify and support strategic
research themes and development.
3.2 Principles of Strategy Implementation
The strategy implementation will focus on a limited number of established and
developmental themes. Within each theme a delivery plan will be established to
include:
 Clinical improvement and benefit to patients and families
 The key strategic objectives and outputs
 The key enablers required to support delivery of objectives
 Measures of success
3.3 Established Research Themes
The five established research themes are:
 Clinical pharmacology and research into children’s medicines
 Paediatric Oncology
 Inflammatory Disease
 Infection
 International Child Health
There are close links between these themes and they complement research
strategies developed by the LHP initiative. A Lead will be assigned for each
Established Research Theme and will be responsible for development and
implementation of the delivery plan for that theme. A summary of the current
position, key strategic objectives/enablers and measures of success for each theme
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
are provided in the Appendix. There are a number of overarching strategic objectives
and enablers common to all five themes, and these are indicated below.
3.3.1 Key Strategic Objectives
 Provide excellence for patient benefit through development of novel
biomarkers, treatment therapies and interventions for children and young
people
 Prioritise development of focused key research themes of national and
international standing
 Establish sustainable collaborations with high quality academic institutions
 Every child offered the opportunity to participate in a research study / clinical
trial
3.3.2 Key Enablers
 Senior academic appointments in collaboration with UoL and other academic
partners
 Increase in NIHR Programme and Project Grants
 Major structural NIHR awards
 Increase in major Medical Research Charities Programme, Project and
Training Fellowship awards
 Increase in commercial funding
 Shared strategic vision for research with the Alder Hey Charity
 Efficient use of translational research expertise and facilities within the UoL
campus and on the CHP site
 Provide training in basic and clinical science for new and developing
investigators and develop further clinical research fellowships and PhD
studentships
 Continuous increase in the number of children participating in research
studies
3.3.3 Measures of Success
 Improved health outcomes for children and young people
 Improved quality of life for children, young people and their families
 Novel treatment strategies for children and young people with acute and
chronic conditions
 Excellence in delivery measured against NIHR High Level Objectives
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
3.4 Developmental Themes
There are a number of important research themes which currently do not link directly
into LHP clinical academic themes or do not have sufficient critical mass to be
sustainable without intervention and support. For example the stem cell programmes
in renal cells and Hirschprung Disease (Kenny) between Alder Hey and Cellular and
Molecular Physiology within the University of Liverpool.
Some developmental themes are associated with academic partners other than UoL.
The Trust currently has shared research initiatives with LJMU particularly with the
School of Pharmacy. There is significant potential for joint research with LJMU in the
areas of Paediatric Exercise and Movement Sciences, Nursing and Public Health.
There is also a requirement to consider the potential for research focus alongside the
development of specialist services within Alder Hey, in particular the ‘Safe and
Sustainable’ initiatives relating to paediatric cardiac surgery and neurosurgery and
where there are research active NHS teams with a track record of competitively
awarded grants such as in endocrinology and neurology.
The strategic aims here will be to identify areas that require enhanced infrastructure
and support to improve research performance and develop specific initiatives which
will assist individual research teams to meet planned objectives. Proposed
developmental themes will be required to prepare individual capability statements
and strategies which will provide a road map for achievement of sustainable, clinical
academic theme status: this will form the basis of the extent of investment, if any, in
a proposed developmental theme (see section 5.3). The mechanism to develop
these plans will include structured workshops involving key researchers and senior
staff from Alder Hey and relevant partner(s) which will identify priority areas for
research along with the resources and infrastructure needed to take these forward
with Clinical Business Units (CBUs) and the Research Strategy Group. Summaries
will be published which will provide Alder Hey CBUs and other stakeholders with
detail on the developmental trajectory and investment needs for these themes.
4.
Governance and Structure
The governance and reporting structures for implementation and monitoring of the
research strategy will be integrated within the LHP and North West framework while
ensuring accountability for delivery sits within Alder Hey Children’s NHS Foundation
Trust and its Research and Clinical Business Units.
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
4.1 Internal Governance
The Research Strategy Group and CBUs will provide the vehicles for clear lines of
reporting
and
accountability
between
research
themes
(established
and
developmental) and the Alder Hey Trust Board (Figure 1). A Lead will be established
for each Research Theme and will be responsible for the deliverables within their
appointed theme. Each theme leader will be a member of the Research Steering
Group and provide regular reports through support from the Trust Research Director.
An annual research strategy report will be presented to the Alder Hey Trust Board
through the Trust Director of Research.
In general each research theme will be associated with a CBU and each CBU will be
required to elect a Research Lead who will also be a member of the Research
Steering Group. Research will be integrated into strategic and business planning for
each CBU through inclusion in the Quality Steering Group terms of reference.
4.2 External Relationships
The external perspective for the research strategy is represented in Figure 2. Lines
of communication and accountability will ensure that the strategy is refined and
refreshed within the context of LHP and the wider North West Concordat and that
strategic research relationships with other partners are fostered and developed
through the Research Strategy Group. Where appropriate, Research Theme
Leaders will provide reports and updates to the relevant LHP Clinical Academic
Leads to contribute to the overall strategic development of the research component
of LHP.
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
4.3 Research Governance
The JRO will provide the primary mechanism for the development of an integrated
research governance framework to underpin the Alder Hey research strategy. This
will include: (1) facilitation of the transfer of best practice in research governance
between partner organisations, adopting common processes and procedures to
minimise the time taken to initiate partnership research; (2) continuous development
of systems to facilitate delivery of high quality research studies; (3) implement robust
processes for internal and external peer-review of strategic plans and individual
projects; (4) through LHP and JRO, take a systematic approach to respond swiftly to
calls for proposals from external funders, including new initiatives from NIHR,
Department of Health and Research Councils.
5.
Finance and Funding
5.1 Overarching Financial Strategy
In order to achieve the aims within this strategy there is a need for significant
investment in people, equipment and facilities. The scale of investment is of a
magnitude higher than that which is available through external funding sources and
will require significant entrepreneurial fundraising through the Alder Hey Charity. This
will require a sustainable financial model based on full economic costing and
equitable income distribution which accommodates the requirements of the Trust,
funding bodies and our academic collaborators.
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
For each priority theme to be sustainable and to achieve the stated objectives,
approximately £1m per annum per theme will be required. In addition, the
developmental themes will require some support to build critical mass in the early
stages. The attraction of major structural funding from external sources for a priority
theme(s) may enable diversion of entrepreneurial funds to developing themes. As
research themes develop critical mass, the success rate of NIHR and Medical
Research Charity funding will increase providing further stability and momentum to
each theme. There are at least three main categories for the potential targeting of
financial initiatives: strategic investment/capacity building, pump-priming and capital
opportunities.
5.2 Strategic Investment/Capacity Building
This will be focused around the priority themes and will involve strategic investment
in appointments, equipment, infrastructure and in recurrent and capital expenditure.
This will ensure that resources are optimized in areas of expertise within Alder Hey
and LHP and therefore maximize the potential for acquisition of external funds for
programme awards, projects, infrastructure and capital through NIHR and other
funders.
5.3 Pump-priming
This will be primarily related to developmental themes which represent areas where
there is some expertise but insufficient track record and critical mass to secure larger
programme grants and major NIHR awards. The reasons for pump-priming and the
activities which the funds will support will be varied, but will always be coherent with
the published strategy/road map for any given theme and explicitly linked to
development of sustainable research leading to improved patient/child health
benefits.
5.4 Capital Opportunities
These include funding streams advertised by NIHR. These calls generally require
rapid turnaround with little time for preparation and consideration of strategic
relevance. The integration of Alder Hey within LHP and the JRO, and where relevant
with partners across the North West footprint, will provide the environment to
compete for such opportunities either as a stand-alone bid or integrated within a
consortium bid with at least one other partner. The targeted deployment through
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
pump-priming and strategic investment/capacity building will optimize the chances of
success for these bids. The appropriate structures and resource availability within
Alder Hey will need to be in place to ensure that bids can be prepared in a timely
manner.
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
6.
Deliverables and Milestones
Objective
Purpose
Date
To identify LHP Clinical Academic Themes
Dec 2011
Partnership Meetings
LHP workshop
Institute of Translational
To establish key research priorities in child health for Jan 2012
Medicine Child Health workshop Alder Hey and UoL
Liverpool John Moores
University and Alder Hey
workshop
To begin to identify key areas for research
collaboration
March 2012
Representatives from
Manchester Academic Health
Sciences Centre
To identify and agree research areas which can be
jointly or individually led across NW Footprint
October
2012
Alder Hey Charity engagement
To present research strategy to Alder Hey Charity
Trustees and seek engagement
April 2012
Appoint Research Theme
Leaders
Provide strategic leadership for each Research
Theme
March 2012
Publication of delivery plans for
each Research Theme
To generate published plans for presentation to
Research Steering Group and LHP
July 2012
Appoint CBU Research Leads
To identify Research Leads for each CBU to join the March 2012
Research Strategy Group and provide research
focus in each CBU
Launch Research Strategy
Group
Establish terms of reference and membership of
Research Strategy Group
Strategic Planning and
Organisation
June 2012
Governance
Peer review panel for Alder Hey To provide and external peer-review mechanism for
Charity
research applications to Alder hey Charity
Review research strategy
April 2012
To ensure strategy is contemporaneous with internal Jan 2013
and external context for Alder Hey
Communication and
Marketing
Develop portfolio of research
stories
To be used as material for fund raising for research
March 2012
Alder Hey research website
Promotion, communication and marketing
July 2012
CRF formal opening
To promote CRF among local and national
stakeholders
May 2012
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
APPENDIX: Established Research Themes
I.
Clinical pharmacology and research into children’s medicines
Context, current position and patient benefit
The need for medicines designed for use in children and infants and in appropriate
formulations is well recognised. Research at Alder Hey has focused on the
understanding of adverse drug reactions in children, the development of ageappropriate formulations of medicines for children and genetic predisposition for the
development of side effects to drugs or poor response to medicines. Recent
legislation in Europe and the USA has mandated that all new pharmaceutical
products seeking market authorization must undergo clinical trials in children and
young people unless there is a scientific or regulatory reason not to do so.
Consequently, there is a huge increase in the volume of clinical trials of medicines in
children and infants and a pressing need to understand aspects of safety in their
use.
Researchers in Liverpool are ideally placed to provide leadership within this
important field. The NIHR Medicines for Children Research Network (MCRN)
Coordinating Centre and MCRN Local Research Network for Cheshire Merseyside &
North Wales (Peak, Blair) are based at Alder Hey. The MCRN network has
dramatically increased the numbers of children and young people participating in
clinical trials, nowhere more so than within Alder Hey.
The Centre for Drug Safety Sciences and the Wolfson Centre for Personalised
medicines within the UoL have strong paediatric research programmes focusing on
pharmacogenomics and adverse drug reactions which have already attracted
considerable external research funding. The NHS Chair in Pharmacogenetics
(Pirmohamed) based in Liverpool leads on these initiatives and has an increasingly
rich paediatric research portfolio.
The newly formed Paediatric Medicines Research Unit (PMRU) at Alder Hey (Nunn,
Turner and Peak) and collaboration with LWFT has a clearly defined strategy to
generate original research in the area of medicines usage and practice with a remit
to attract funding through NIHR, industry and the commercial sector. LJMU is a key
academic collaborator and will support research into the area of paediatric and
neonatal medicine formulations.
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Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
The newly established CRF at Alder Hey provides dedicated facilities to provide a
focus for medicines related research, including early phase trials and experimental
medicine which have previously not been feasible in the absence of a CRF. The
growth of the CRF will be supported by dedicated Paediatric Clinical Pharmacology
medical input, with Liverpool being one of the key centres in the UK developing a
cohort of new paediatric academic trainees through the MRC Clinical Pharmacology
Programme.
Key Strategic Objectives
 To
support
Liverpool's
international
expertise
in
paediatric
clinical
pharmacology and stratified medicines in the development of safe, effective
and targeted therapies in children and young people.
 Provide real patient benefit by introducing new medicines for children or
making existing medicines safer or more effective.
 Develop the theme by attracting funds for structural grants to the level
required to successfully bid for Biomedical Research Centre status
 To provide a world-class, child-centred CRF, which will ensure translation of
basic biomedical research into effective clinical care, which addresses unmet
health needs of children.
 To support the requirements of EU Regulation on Better Medicines for
Children to provide an experimental medicine facility, which will attract and
conduct early phase studies within approved Paediatric Investigation Plans.
 To ensure patient safety as paramount and absolute in every aspect of
management, governance and delivery of studies of children’s medicines.
 To provide a “one-stop-shop” in Liverpool to Industry seeking to conduct EM /
early phase studies of novel agents across the regulatory age groups (from
neonates to adults)
 Develop a national and international profile in the areas of paediatric medicine
formulations through the Paediatric Medicines Research Unit
Key enablers
 Senior academic appointments in Paediatric Clinical Pharmacology in
collaboration with UoL
 A financially sustainable CRF providing inpatient facilities and with over 80%
occupancy
20
Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
 Increasing NIHR Programme and project awards annually
 Provide training in basic and clinical science for new and developing
investigators and develop further clinical research fellowships and PhD
studentships
 Efficient use of translational research expertise and facilities within the UoL
campus and on the CHP site
 Work with the Alder Hey Charity to facilitate these developments in a timely
manner.
Measures of success
 New, safer and/or more effective medicines for children and young people
 Continued growth in clinical trial recruitment and commercial study
participation
 Publication outputs
II.
Paediatric oncology
Current position and patient benefit
The challenges for paediatric oncology are not only to improve the survival of
patients with aggressive tumour types but also to decrease the treatment-related
toxicity. Translational research in childhood cancer in Liverpool is undertaken by the
Paediatric Cancer Biology Group (Chair, Professor Barry Pizer), formed as a
collaboration between Alder Hey clinicians and UoL scientists and now affiliated with
the Liverpool CRUK Centre. Underpinned by major grants from the BBSRC and the
Neuroblastoma Society, the initial focus of research was to understand and tackle
the problem of drug resistance and relapse in paediatric tumours mainly
neuroblastoma (NB) and medulloblastoma (MB). This includes in vitro studies at
single cell level using state-of-the-art live cell imaging in the Centre for Cell Imaging.
The group has also developed of a new chick embryonic model for rapid and easy in
vivo investigation of paediatric tumour cell behaviour. Current work is investigating
the
effects
of
low oxygen
levels (hypoxia) its correlation
with
adverse
clinicopathological factors in NB, MB and glioblastoma. The group is also expanding
its horizon to include Wilms tumour.
Clinical members of the group have a prominent position in national and international
clinical trial work. For example, Professor Pizer is Chair of the International Society
for Paediatric Oncology-Europe Brain Tumour Group and Dr Howell has a prominent
21
Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
position in the Children’s Cancer and Leukaemia (CCL) Renal Tumour Group. Alder
Hey is one of the best-performing CCL centres in respect of trial participation and is
one of the nine members of the Paediatric Experimental Cancer Medicine Centre
network to conduct early phase clinical trials.
Local clinical research projects in neuro-oncology include the development of 3T
intra-operative and advanced MR imaging, the value of arterial spin labelling and
‘microbubbles’ in CNS tumour imaging and the roll out of a new Liverpool staging
system for craniopharyngioma. We are developing an active programme into the socalled ‘Posterior Fossa Syndrome’, a common but incompletely characterised
complication of surgery.
Supportive care studies include the investigation of novel biomarkers for the
diagnosis and management of patients with central venous catheter associated
infections and a collaboration with Professor Munir Pirmohamed, Dept of Molecular
and Clinical Pharmacology, UoL, to explore the pharmacogenetics of cisplatin
induced ototoxicity using a genome wide and functional genetic approach (world
first).
Key Strategic Objectives
 To continue to develop translational Paediatric Oncology research by attracting
major grants.
 To expand the importance of the Paediatric Cancer Biology Group within the
Liverpool CRUK Centre.
 To develop a programme of research into Wilms tumour in collaboration with Dr
Trish Murray’s Murray’s Group (UoL)
 To establish Liverpool as a nationally recognized centre for translational and
clinical research in neuro-oncology
 To expand on a programme of first class supportive care research.
 To develop the collaboration with Professor Munir Pirmohamed, to undertake
programme of pharmacogenetic research in Paediatric Oncology
Key enablers
 Senior academic appointments in Paediatric Oncology in collaboration with UoL
22
Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
 Sustainable funding for research support staff including additional research
nurses
 Support for existing researchers to undertake research within their job plan
 Increasing NIHR Programme and project awards annually
Measures of success
 Improved survival rate
 Reduction in treatment-related toxicity
 Continued growth in clinical trial recruitment and commercial study
participation
 Publication outputs
III.
Inflammatory disease
Context, current position and patient benefit
The Clinical Academic Department of Paediatric Rheumatology is one of UK’s
leading Paediatric Rheumatology Research Centres. With a very vibrant local
research team, it has an emerging international reputation in translational research in
Paediatric Rheumatology. The Department cares for patients with severe chronic
inflammatory conditions some of which have mortality rates close to malignant
disorders. The complex conditions managed have significant co-morbidity, are lifelong, potentially disabling, and have an enormous impact of the child and
adolescent, as well as the wider family. The advent of biologic therapies has opened
a major new era in the medical management of paediatric autoimmune and autoinflammatory disorders, their introduction resulting in a paradigm shift in the
pharmacotherapy. As one of the largest Paediatric Rheumatology services in the UK,
its significant recent expansion in clinical research illustrates the major potential for
further growth and development.
The Department is extremely active in collaborative research with all major paediatric
rheumatology research networks across the UK, taking national leadership roles in
those related to juvenile-onset lupus (Beresford), juvenile-onset dermatomyositis
(McCann), and childhood-onset scleroderma (Baildam). Alder Hey is the UK’s first
and only “Centre of Excellence for Childhood Lupus” and Coordinating Centre for the
UK’s JSLE Study Group, a multi-disciplinary translational research group
investigating this archetypal, paediatric systemic autoimmune disease. The
Department has established international collaborations with the Paediatric
23
Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
Rheumatology International Trials Organisation (PRINTO, present in >50 countries
across Europe, Asia and South America, UK PRINTO Coordinator) and the
Understanding Childhood Arthritis Network (UCAN; UK representative), an
international, translational collaborative initiative focussed on determining the
biological basis of juvenile idiopathic arthritis. All of the senior clinicians within the
Department have a strong individual research portfolio and peer reviewed publication
record, with key international roles within the respective Paediatric Rheumatology
European Society working parties. Alder Hey is therefore uniquely positioned to lead
an internationally relevant program of translational research in inflammatory,
autoimmune disorders.
The Department’s Research Programme is fully integrated into the activities of the
NIHR MCRN / Arthritis Research UK Paediatric Rheumatology Clinical Studies
Group, leading UK-wide multi-disciplinary experts in translational research,
prioritisation and development of a comprehensive portfolio of UK clinical trials in
paediatric rheumatology and musculoskeletal health. Alder Hey is a major UK
recruiting centre for commercial trials of new biological agents. Capacity to deliver of
experimental medicine and early phase studies has been immediately enhanced
through development of the Alder Hey CRF. Alder Hey is nationally leading initiatives
to foster partnership with the pharmaceutical industry in developing early phase
studies of biologics in children, skills and experience transferable to other paediatric
sub-specialities and disorders.
Building therefore on significant expertise and strengths within Alder Hey in clinical
and applied research in relation to inflammatory, autoimmune disease, with strong,
established clinical collaborations including rheumatology, respiratory, nephrology,
gastroenterology, neurology, haematology, there is a major strategic potential for
developing around the theme of inflammation, translational and applied research in
other disease specialties already strong at Alder Hey. This is illustrated by an
already
extremely
productive
collaboration
between
the
Departments
of
Rheumatology and Nephrology. Enhancing the already research active Department
of Nephrology, close clinical academic integration between the Departments has
been instrumental in fostering an exceptional future clinical academic career in
paediatric nephrology, significantly developing the clinical / translational research
activity of the Department of Nephrology, and the establishment of a robust platform
24
Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
to continue the investigation of renal biomarkers of disease and podocyte function in
health and disease.
Key Strategic Objectives
 That all children with chronic inflammatory disorders cared for at Alder Hey have
an opportunity to participate in clinical trials / studies to improve the care and
understanding of their condition
 To support Liverpool’s national and international leadership in conducting clinical
trials in paediatric rheumatology and other disease areas of biologic therapies in
children
 To enhance Liverpool’s potential to be the UK’s leading centre for Experimental
Medicine and early phase clinical studies of new biologics and novel agents in
paediatric rheumatology and other inflammatory disorders and position it as the
UK’s leading centre for recruitment to associated commercial trials
 To augment Liverpool’s national and international leadership and collaborative
initiatives of translational research in autoimmune, inflammatory disease
 To develop its leadership role in developing robust, relevant and valid outcome
measures for use in clinical trials and applied research in paediatric rheumatology
and other inflammatory disorders
 To prioritise development of collaborative partnerships with Liverpool’s Wolfson
Centre for Personalise Medicine and MRC Centre for Drug Safety Science
 To support the development of multi-disciplinary research underpinning the
excellence in holistic care already recognised at Alder Hey to enhance patient’s
quality of life
Key enablers
 Senior academic appointments in Paediatric Rheumatology
 Senior academic appointments in research active sub-specialties related to
inflammatory research theme Key Objectives
 Sustained, focused programme of stepwise increment in post-doctoral research
associates, linking closely with relevant Departments within the University of
Liverpool, underpinning translational research investigating mechanism of
disease to identify potential biomarkers and novel therapeutic targets of
inflammatory disease
25
Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
 Nationally competitive, sustained development of clinical and non-clinical PhD
Studentships aligned and integrated into research active Clinical Academic Units
in support of the inflammatory theme Key Objectives
 Prioritisation of integration of CLRN- and Industry-funded Research PAs into
research active Consultant job plans to deliver on studies and foster increment in
departmental research activity
 Formalised and closely supervised research skills and related outputs /
qualifications within PPD plans for multi-disciplinary members of research groups
to develop multi-disciplinary research leaders of the future
 Prioritisation and investment in ongoing development of the Alder Hey CRF
Measures of success
 Stepwise, sustained increment in leadership, participation in, and recruitment to
target to national and international priority studies / trials aimed at improving
health outcomes and understanding of disease for children and young people
with autoimmune, inflammatory disorders
 Stepwise, sustained increment in experimental medicine and early phase studies,
and
industry-sponsored
trials
of
novel
agents
targeting
autoimmune,
inflammatory disorders in children
 Stepwise, sustained increment in NIHR and major Medical Research Charities
grant income (programme, project and training related)
 Development of robust, validated outcome measures that subsequently
demonstrate significantly improved quality of life for children, young people and
their families
 Development of novel biomarkers and treatment strategies for children and
young people with chronic inflammatory, autoimmune conditions
IV.
Infection
Context, current position and patient benefit
Infection is the commonest cause of ill health in children. Research at Alder Hey has
focused on understanding why children respond differently to acute infection and
developing strategies to identify and manage acute infection. In addition, work at
Alder Hey has focused on children with conditions that predispose them to chronic
infection, for example cystic fibrosis, neuromuscular disease and immunodeficiency.
To date, this research has focused on three areas, 1) the investigation of disease
26
Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
mechanisms 2) the systematic review of interventions to treat or prevent infection
and 3) the evaluation of interventions that improve the lives of patients with these
conditions.
Key Strategic Objectives
 To identify valid clinical tools for the early recognition of infection
 To enable children with chronic conditions to participate in and contribute to
research that impacts on their quality of life
 To improve the lives of patients with conditions with chronic infection, by

Ensuring that we understand the mechanisms that underpin the infective
processes in these conditions

Establishing best evidence to support interventions that treat or prevent
chronic infection

Investigating novel strategies that maximise the effectiveness of current
treatment strategies

Recruitment to trials that investigate innovative treatments

Identification and development of key outcomes that are relevant to
children to enable evaluation of new therapies
Key enablers
 Support and strengthen the academic team
 Ensure that patient recruitment is facilitated in the Children’s Health Park
through
o An effective and integrated CRF
o Links with acute services (A&E, PICU etc)
o Capacity in the acute services to support this research programme
 Support the continuing success of the CF and Genetics Disorders Cochrane
Review Group at Alder Hey
 Continue to forge strong links with UoL to examine disease mechanisms
 Utilize the emerging co-ordinated research strategy in Liverpool to support
research that impacts positively on the lives of children with chronic illness
through,
o The development of pertinent outcome measures
o The development of novel treatment interventions or strategies (UoL
and LJMU)
o Evaluation of new interventions (working with the MCRN CTU)
27
Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
 Develop strategies that employ personalized responses to medicines
 Continued links with global research initiatives (see below)
Measures of success
 Improved quality of life for children with chronic infection in the UK and
internationally
 Novel interventions and strategies for management of infection
 Novel outcome measures which facilitate evaluation of new therapies in
children
V.
International child health
Context, current position and patient benefit
There are many organisational and individual benefits from involvement in
international development. These include enhanced leadership and professional
skills for NHS clinicians and managers, enhanced reputation of the organisation and
greater staff satisfaction with improved retention and productivity.
Engagement in International Child Health (ICH) also brings great opportunities with
respect to research. The existing strong research profile of Alder Hey, including
activities in collaboration with the UoL, is based in part on in research conducted
overseas. Examples of these include Professor Atif Rahman’s programme of
research into Child Mental Health in Pakistan, Dr Enitan Carrol’s work in infectious
diseases in Malawi, Professor Nigel Cunliffe’s research activities in Africa and Nepal,
Mr Chandna’s work in models of eye care of childhood blindness in developing
countries and Dr Rachel Kneen’s work on epilepsy services in Nepal. In addition,
existing health links such as those undertaken by Ms Sian Falder and others include
a research component. There is no doubt that our research activities and our
reputation as a leading centre for research will be enhanced by increasing
engagement with research activities overseas. Thus research is a vital component of
an ICH strategy, consolidating and further developing Alder Hey’s research networks
worldwide.
Key Strategic Objectives
 To continue to develop research in ICH by developing as part of a trust wide
strategy in this area,
 To attract grant funding for ICH research.
28
Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
Key enablers
 The development of a strategy for ICH at Alder Hey. The strategy should
include networking with a number of organisations including the UoL and
other HEIs, the Liverpool School of Tropical Health, Tropical Health and
Education Trust and the Royal College of Paediatrics and Child Health.
 A formal ICH Group and Department of International Child Health should be
established at Alder Hey, with identifiable leadership, membership and
administrative support.
 Consideration should be given to recognising ICH activities in the job plans of
Alder Hey staff.
 Engagement with the Alder Hey Charity to support ICH research.
Measures of success
 Improved quality of life for children internationally
 Increasing number of countries worldwide in which Alder Hey leads research
programmes
29
Alder Hey Children’s NHS Foundation Trust Research Strategy: 2012
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