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INFORMATICS STRATEGY 2014 - 2017
Harnessing data to transform the experience and delivery of health
care and research across the Partnership
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Contents
Executive Summary ................................................................................................................................. 3
Introduction ............................................................................................................................................ 5
Our Vision ................................................................................................................................................ 6
Our Goals ................................................................................................................................................ 8
The challenge .......................................................................................................................................... 9
Where are we now? .............................................................................................................................. 10
Objectives 2014-2017 ........................................................................................................................... 13
Objective 1: UCLPartners as a single, connected system ................................................................. 13
Objective 2: Use information to drive population health improvements ........................................ 18
Objective 3: Use the connected system to enable research participation ....................................... 21
Objective 4: Develop workforce capability ....................................................................................... 23
Objective 5: Innovation .................................................................................................................... 25
Objective 6: Governance and Leadership to Deliver the Strategy .................................................... 27
Appendix A: Guiding Principles ............................................................................................................. 29
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Executive Summary
Healthcare is the last major industry not to be transformed by the information age. Our ambition is
to address this across UCLPartners. Good information is a cornerstone of high quality healthcare,
supporting people to stay healthy, multi professional teams to deliver the best care, and citizens to
know about care and treatment choices and the quality of services that we offer.
Since December 2013, colleagues across the Partnership have come together to co–create a
vision for the future that is underpinned by good use of information.
The three central themes of our vision are to:
Make the best use of the data we have across the partnership safely;
Develop a single system approach to information sharing that starts locally and builds
collaboratively around patient care, rather than being driven top down;
Promote connectedness to ensure the information we give to any health or care
professional is recorded properly and shared safely so that patients do not have to keep
telling people the same thing time and again.
This Strategy has been developed in partnership; we have consulted widely with patients, the
charitable sector, health and care professionals and the academic community across our
Partnership. It unashamedly focuses on the patient and care pathways so that wherever patients
go, from GP, to social care, A&E or a hospital, professionals will be able to get the information they
need to make sure the best care is provided.
Anticipated benefits of this informatics strategy include:
Improving patient experience and clinical outcomes
Freeing up clinical time for more face to face care delivery.
The ability to verify the quality of care being delivered is excellent and making sure that we
get the best value for money.
Enhanced access to useful records online whilst keeping information safe, secure and in
one place.
A new approach to supporting the development of innovation of informatics and digital
eHealth solutions across the partnership.
Creating a learning community supported by world class research and quality improvement
programmes.
The strategy is intentionally bold, ambitious and enterprising.
It will require us to:
Act with agility – encouraging innovation will necessitate moving quickly and taking
investment opportunities where they can best accelerate progress;
Work boldly - we propose to build on local best practice but with an eye on building
capacity and capability to mount programmes at scale;
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Share willingly - we propose to share know-how, tools, methods and expertise widely,
making them available to the entire Partnership to rapidly accelerate quality
enhancements and quality care delivery;
Deliver globally - our ambition is to demonstrate that we can solve problems locally and
across our Partnership in a way that is relevant to healthcare internationally.
The spirit of collaboration and enthusiasm to harness the power of informatics to drive change for
clinical benefit across UCLPartners has been heartening. This document sets out the vision, clear
direction, a proposed way of working and early priorities. We look forward to working with you to
turn this Strategy into reality.
Professor Andrew Morris Professor David Fish
Chair, UCLPartners Informatics Board Managing Director, UCLPartners
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Introduction
Patients expect us to provide care for them safely, efficiently and equitably and to constantly look
for ways to improve the services we provide. It is not possible provide safe care if health and social
care professionals don’t have access to the information they need to make informed decisions
because clinical information remains in departmental or organisational silos or there are barriers
imposed to sharing information which do not take into account patients’ best interests. We can’t
operate efficiently if we are unable to track patients across their whole pathways within our health
and social care system and ensure our staff spend as much time as possible caring for people
rather than searching for information or recording information that already exists elsewhere. We
can’t provide equitable care when we don’t have data to inform us whether interventions benefit
different patient groups or to identify where there are variations in services. Transformation of
health outcomes for our population can only be achieved if the Partnership has the requisite
foundation of enhanced collaborative relationships, as well as better data and analytics to
understand, measure, and evaluate changes in the systems that we work in.
Patients and the public also expect us to tell them how we are using their information, why we
need to share it with others, who has access to it and what safeguards we have put in place to
keep it secure. They also increasingly expect us to share information with them, in a format they
understand, and to enable them to contribute their own data and let us know about their care
preferences.
We can only deliver research that drives forward modern care if we move to a model where we
know that patients have consented to the use of their data for research and don’t have to be asked
repeatedly, where data collected at the point of the care can be seamlessly translated into research
ready datasets, where we have enabled our workforce to offer patients the right to participate in
research and we provide a mechanism for translating innovations back into our health and care
system as part of a continual improvement cycle.
These ambitions are not impossible to achieve but we can only make progress at pace if we work
together as a partnership, learning from each other’s experiences, harnessing skills and expertise
from across our organisations to build capacity, reduce duplication of effort and break down
traditional barriers. We also need to recognise that we are all starting from different places and
that it will take time, effort and resource to get everyone to the same level.
This Strategy focuses on how we can build on existing expertise across the Partnership to enable
the wider vision of integrated care for our patients. It defines the role that UCLPartners should play
in the ecosystem; enabling mechanisms to help Partners to advance data sharing; and how to
effectively structure this newly formed alliance to ensure transparency, collaboration, inclusivity,
innovation and agility.
If we work together with shared visions and goals we have a real and unique opportunity to make
a difference to the patients and populations we serve, place the Partners at the leading edge of
informatics within the UK, and attract significant inward investment from industry and grant funding
bodies.
This Strategy sets out our ambitions for 2014-2017.
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Our Vision
Our vision is to harness the strengths of the Partnership to develop a model of
informatics innovation and adoption that will transform benefit for patients and citizens
across the geography we serve, add value to health care organisations locally, nationally
and internationally through improved health care delivery and enable more rapid
translation of innovation into practice.
Consider the following scenario which is all too familiar in its nature:
Doris is an elderly lady who has mild dementia, Parkinson’s disease and chronic kidney disease,
but is fiercely independent and continues to live alone, with support from carers. She falls one
Saturday evening and is unable to get up but manages to reach the phone and call her daughter,
who lives nearby. Doris has some pain in her leg so her daughter calls an ambulance. The
paramedic assesses Doris and thinks she may have fractured her hip so arranges for her to go to
the nearest Emergency Department. The paramedic documents his assessment on a patient report
form and asks Doris about her past medical history and whether she is taking any medications.
Doris can’t remember the names of her tablets so her daughter finds the repeat prescription list
and gives it to the paramedic.
Doris is taken to the local hospital where the paramedic leaves a copy of the patient report form
with the nurse. Doris is seen by an Emergency Department registrar and sent for X-rays, which
confirm that she has a fractured neck of femur. He asks Doris and her daughter about the fall and
whether Doris has any past medical history or allergies or is taking any medications. Doris’s
daughter mentions that she gave the list of medications to the paramedic but the registrar can’t
find the list anywhere. Doris’s daughter doesn’t know the names of the tablets.
Doris is admitted to the Orthopaedic ward two hours later, by which time her daughter has gone
home. She is woken up to be asked the same questions again by the Orthopaedic team. There is
no record of her current medication so the FY2 looks on the hospital electronic patient record and
finds a discharge letter from six months ago which has a long list of medication. He is not aware
that the combination of tablets Doris was discharged home with made her kidney function worse
and caused her to become more confused so her GP has stopped some of her tablets. He decides
not to prescribe anything other than analgesia until someone can contact her GP on Monday
morning. She is put on the list for theatre the next day.
Over the next 24 hours Doris becomes increasingly confused. The anaesthetist who assesses
Doris pre-operatively thinks she needs further investigation and postpones her surgery. She
continues to receive analgesia for her hip pain. On Monday morning Doris is found barely
responsive and unable to move at all. Her kidney function has deteriorated significantly and she
has developed respiratory failure from the opiate analgesics. She is transferred to the high
dependency unit. Doris’s GP is contacted and tells staff that Doris’s Parkinson’s disease has been
difficult to manage and she becomes very stiff and immobile if she misses her regular medication.
She also informs them that Doris became very agitated and confused with opiate analgesia on a
previous admission.
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In the meantime Doris’s carer arrives at her house on Monday morning but Doris is not in the
house. She phones Doris’s daughter to find out what has happened.
Doris eventually gets her hip fixed and is transferred back to the ward after three days but is very
slow to mobilise. The hospital multidisciplinary team spend a long time contacting the community
based team who know Doris well to get information about her home circumstances and her current
level of support in the community so they can record this in the hospital record. Doris takes three
months to get back on her feet but her multidisciplinary team think she will struggle at home and
start to make plans for her to be admitted to a nursing home.
If the health care professionals caring for Doris in this scenario had access to up to date information
about her medical history and medication when they needed it then the outcome could have been
very different. This scenario is not atypical yet the information needed to avert these problems is
available, however, not necessarily available at the right time or in the right place to those who
need it. There is nothing the clinical team can offer in terms of care and compassion to Doris to
compensate for this.
We cannot continue to tolerate such clinically unacceptable quality of care with the adverse human
consequences, or the repeated waste of precious resources. Our vision is to transform our
services, using informatics as an enabler, so that Doris’s scenario would be very different in the
near future –indeed elements of this already happen in dispersed geographic pockets within
UCLPartners - so the very real prospect of joining these advances together to a new paradigm is
tangible. In our future scenario Doris had already given consent for her clinical information to be
shared with health and social care professionals who need to provide care for her. She knows what
information will be shared, who it will be shared with and why this is important to provide her with
high quality care. She gave consent for her daughter to be able to access her information.
Information about Doris’s medical history, social circumstances and contact details for her carers
can be accessed by the paramedic, the Emergency Department and the Orthopaedic staff so there
is no need for her to be asked the same questions repeatedly. Hospital staff can see a list of Doris’s
current medications and a note from her GP to say that she deteriorates quickly if she misses her
anti-Parkinsonian treatment and that she becomes confused with opiates. She is prescribed her
usual medication on admission and offered alternative analgesia. Staff are alerted when her renal
function begins to deteriorate and advised to reduce the dose of some of her medications. She is
taken the theatre the day after admission and begins to mobilise within 48 hours.
Details of her community care requirements, recent assessments, and her personalised care plan,
are available to the hospital multidisciplinary team and the hospital assessments and updates on
Doris’s progress are shared electronically with her GP, community and social care team. Web
conferencing enables Doris’s entire virtual team to discuss her progress and formulate a single
care plan for her at home well in advance of her discharge from hospital.
We can only achieve our vision by working together as a coordinated network, aligned to a common
set of goals and principles, sharing advances collaboratively, with a willingness to embrace change
for the benefit of our patients and populations.
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Our Goals
Our goals are to use data, technology and information to:
Promote a single system approach
UCLPartners has a unique opportunity to demonstrate the true value to our patients of delivering
informatics at scale. The barriers to achieving this are cultural rather than technical and rely on
organisations working together with a common goal and purpose, sharing experience and
expertise and creating a culture of trust and a duty to share information responsibly across the
Partnership and harnessing patient and public involvement and engagement in support of this.
Traditional boundaries will only be broken down if we act together through an open and inclusive
approach, with the full involvement of all stakeholders in the delivery of healthcare to our resident
populations. We cannot underestimate the socio-cultural factors which influence success of
implementation and use of informatics solutions within healthcare1.2
Our Academic Health Science Network (AHSN) aims to translate cutting edge research and
innovation into measurable health gains for our local population and support improvements in
health both nationally and internationally. Seamless integration of our Academic Health Science
Centre (AHSC) with the AHSN enables us to exploit rapid translation of research outputs,
educational advances and service innovations into practice across our Partnership. This can only
be achieved where there is genuine collaboration between patients, acute, community, mental
health and primary care providers, clinical commissioning groups, industry, local authorities,
independent and third sector providers, academic partners, clinical networks, clinical research
networks, Local Education Training Boards and our Collaboration for Leadership in Applied Health
Research and Care (CLAHRC).
Drive connectedness
We must create a common framework of harmonised approaches to enable effective and
responsible data sharing that will improve connectedness across the Partnership, facilitate
communication between providers and with patients and drive improvement and transformation.
Our approach is to exploit what already exists locally and to adopt an incremental approach to fill
gaps. Success will be predicated on interoperability, sharing of open standards and an open
approach to data management, but will not compromise local development and innovation.
There are opportunities to harmonise and standardise data collected across Partner organisations
which will facilitate information sharing for clinical care and data analysis.
1 Hendy J, Reeves B, Fulop N, Hutchings A, Masseria C. The National Programme for Information Technology: Challenges to
Implementation. Brit Med J 2005;331-336
2 Hendy J, Fulop N, Reeves B, Hutchings A, Collin S. Implementing the NHS information technology programme: qualitative study of
progress in acute trusts. Brit Med J 2007;334:1360 doi:10.1136/bmj.39185.598461.551
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Use big data safely
One of the key principles is to collect data once and use multiple times in multiple settings. We
must enable our Partner organisations to deliver care of the highest quality and value, using
insights from data analysis to reduce variation, waste and harm, address major health challenges
and demonstrate the most effective models of care based on evidence of clinical outcomes.
The increasing merger of medicine and life sciences will challenge us to link phenotype and
genomic data and present this in a meaningful way to clinicians and patients so that we can deliver
personalised approaches to disease management and prevention.
The challenge
Our programme should focus on empowering patients and populations to be more directly involved
in managing their own health and wellbeing, to enhance their experience of being cared for within
our Partnership and to give them more control over managing and sharing their own information,
as described in the Department of Health’s informatics strategy, The Power of Information: putting
us all in control of the health and care information we need3.
UCLPartners supports many Partner organisations across a wide geography to help deliver more
effective care. As such, a patient’s journey of care may result in healthcare encounters with a
number of care providers, each of whom create and maintain a record of that encounter either
electronically or on paper. Information sharing between patients and care providers is essential to
deliver safe, effective and efficient clinical care and information needs to follow patients along their
pathways of care rather than remaining in organisational silos. Without this we put our patients at
risk, disengage and frustrate our workforce and waste money.
Patients with long term conditions spend the majority of time receiving care in their own home or
local environment from their GP, community nurse, relatives or carers yet when a patient is
admitted to hospital acutely decisions about care requirements are often made using outdated
hospital records, or in some cases in the absence of information entirely. This is no longer
acceptable.
Although some excellent progress is being made
within provider organisations, and in geographic
pockets between local primary and secondary
care providers, information about a patient’s
journey of care often remains fragmented as it
spans more than one provider. The current
informatics landscape has, to a large extent, been
developed to meet the regulatory requirements of
institutions and accountable officers rather than
with a specific focus on the patient. In primary
care data collection is significantly more
developed than other parts of our health system
but the quality of data and the mix of structured
and free text still varies between practices.
3 The Power of Information: putting all of us in control of the health and care information we need (2012)
www.gov.uk/government/publications/giving-people-control-of-the-health-and-care-information-they-need.
“As a patient, I have often found myself thinking
if I knew what needed to happen now, I could
help manage this process. Empowering patients
to do this, to partner with clinicians and staff to
manage care, could have a profound effect on
the efficiency of our health service but relies on
information and systems that enable it to
happen.” Fiona McKenzie, Patient
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Research to inform optimal clinical practice is also impaired by the complexity and inconsistency
of the information governance landscape.
Our work force needs to be connected 24/7, able to access patients’ data and assistive decision
making in real time and collect and view data in whichever location they are working. While the
use of mobile devices to capture data is routine in some sectors there is still a huge amount of
work to do to support the workforce across our Partnership to be properly informed and enabled.
The challenge is to work with clinicians and suppliers to enhance the capture of high quality data
across the Partnership, which can be used to drive health improvements and which provide real
world data to complement randomised controlled trials and evidence of treatment effectiveness.
Where are we now?
There has already been significant recent local and national investment in technologies and
applications that have made a difference to how we work. In UCLPartners there are examples
where information is shared between care providers, connecting local health economies, and
creating data repositories where data can be analysed to demonstrate outcomes and support
service improvement.
This non-exhaustive list of case studies illustrates some of our achievements to date:
Barts Health has implemented Cerner Millennium to support incremental development of
an electronic health record across their hospitals. Cerner’s Health Information Exchange
provides a mechanism for real time information to be shared between primary care,
community care, mental health and acute hospital clinical professionals, enabling joined
up care.
Camden CCG has invested in Orion’s integration platform, web portal and enterprise
master patient index to develop an integrated digital care record, centred around a patient,
with information from primary, community and social care, mental health and acute
providers. The Sustainable Insights team share insights from data analysis with providers
with a focus on demonstrating outcomes and value based commissioning.
Tower Hamlets CCG have formed practice networks to deliver defined packages of care
across key areas, including diabetes, cardiovascular disease, COPD and childhood
immunisation. Delivery is underpinned by real time reporting of data using performance
dashboards developed through the work of the Clinical Effectiveness Group. This has
enabled the CCG to significantly improve the number of children receiving MMR
immunisations and to be ranked first out of all CCGs in England for management of blood
pressure and cholesterol in people with diabetes and coronary heart disease.
North East London Foundation Trust is the first type of national demonstrator of Community
RiO 2, has received technology funding from NHS England’s Safer Hospitals Safer Wards
initiative to develop a state of the art portal and ePrescribing system linked to the new and
additional procurement of an electronic patient record.
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The Quality and Value team within UCLPartners have facilitated development of data
collection tools and statistical process charts as an enabler for quality improvement
programmes across the Partnership, such as the deteriorating patient. This is a Partnership
wide collaborative to reduce avoidable cardiac arrests on every ward. This has already
resulted in 40-60% reduction in cardiac arrests in nine of our Partner organisations.
Partners also lead the way in informatics innovations:
Southend University Hospital NHS Foundation Trust, with Clinical Commissioning Groups,
conceptualised, developed and implemented a unique web based electronic intelligent
referral dialogue system (HOT-TIA) which risk stratifies patients who have suffered a
transient ischaemic attack so that patients are assessed, investigated and treated in the
right place at the right time before they have stroke. The system empowers patients and
GPs and won the eHealth Insider award for best use of IT in patient care and a Health
Service Journal award in 2013.
The UCLPartners Deteriorating Patient Collaborative
The Deteriorating Patient Collaborative was established in 2010 as the first formal Quality
Improvement learning collaborative across 16 UCLP Trusts, led by medical and nursing
professionals, to address urgent quality and safety opportunities common across Partner
organisations.
The aim is to reduce avoidable cardiac arrests by 50% vs. baseline in each Partner Trust,
focusing on five key drivers of outcome for patients at risk of acute deterioration.
Three of the original 5 North Central London collaborating Trusts have now met their goal
of 50% reduction in avoidable cardiac arrests. The others show significant improvement,
and now 9 trusts across UCLP show at least 40% improvement over baseline.
The informatics/analytical infrastructure to feed-back performance as time series run charts
is central to progress, and can be applied to any context across the partnership, including
“whole system” interventions. Deteriorating patient is extending from mortality reduction to
focus additionally on treatment escalation planning at the end of life and mortality at whole
system level.
The development of UCLP’s Statistical Process Control Data Input Tool (SPCDI), sourced
from a Partner trust and adapted to Partnership needs, supports our vision to improve
outcomes for local populations through measuring real-time data, whilst empowering front
line staff to deliver improvement.
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Moorfields Eye Hospital has led the development of a web based electronic ophthalmology
record, developed using open source technology, which consolidates information relating
to eye examination results, images, pathology and clinical correspondence and provides
data for quality improvement and research.
Care City is collaboration between North East London Foundation Trust and the London
Boroughs of Barking and Dagenham associated with the Redbridge and Havering, Barking
and Dagenham CCG, local authority and health economy partners. Care City has the bold
ambition to become one of the leading community frailty institutes in the world. It will help
co-locate the ICT education, workforce and training communities. Care City aims to act as
an ICT incubator, leveraging inward investment, attracting national and international
research and development and creating job opportunities within the local geography.
Our challenge is to spread best practice and create an enabling infrastructure and framework
that facilitates all corners of our Partnership to excel and to learn from those at the forefront of
developments.
“Delivering improvement to patient outcomes and experience can only be achieved with the support
of evidence driven by excellent data. There are inconsistencies in the reporting of data to national
audits, to national registries and in the compilation and analysis of these rich datasets. Having the
ability to mine big data, to understand interrelationships and provide critical analysis in a timely
manner will help improve patient outcomes without doing anything else. Placing value on the
outcome and performance information as a means to drive peers to do better will make a difference
to how we plan and organise patient services, training and education and population health.”
Dr Astrid Mayer, Clinical Information Lead, Royal Free
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Objectives 2014-2017
We have identified the top six objectives for 2014-17. They are the product of careful consideration
of the NHS environment and the challenges and opportunities facing UCLPartners, and enabled
by extensive consultation with patients and stakeholders across our Partnership. The objectives
have been selected as building blocks essential to improve the services we offer to patients.
Objective 1: UCLPartners as a single, connected system
The complexity of healthcare delivery in today’s NHS means that there is a need to facilitate
appropriate access to patients’ information to ensure patients receive seamless health care as
they move between NHS Trusts, primary and social care territories. The provision of high quality,
evidence based patient care requires the right information to be available to the right person at the
right time. It is therefore essential that healthcare professionals are able to communicate and share
information in order to provide the best possible care for patients. This will require agreed
governance procedures and technology that support clinicians, departments and Institutions to do
their work effectively.
We need to map the landscape to establish the maturity of the digital landscape locally, which is
an essential pre-requisite to enabling connectedness across the Partnership, and understand
informatics capability and leadership currently in place to support and drive change.
The environment scan will enable us to assess where local investment in technologies which
support data sharing has already occurred and to identify what additional infrastructure and
technologies are required to enable effective sharing of data and images across the Partnership.
We will agree a minimum dataset of information that is relevant to all patient pathways and use
this to determine each organisation’s state of readiness to share this information in a digital format
with other Partners, using a set of open standards.
In addition to understanding the digital landscape there is also a need for parallel work to
understand the current decision and organisational change processes that information feeds into
and how these processes would need to change to make best use of this Informatics Programme.
Action 1: We will undertake an environment scan to assess the maturity of our current
digital landscape and to identify where investment is needed to help us achieve our
aspirations.
Action 2: We will develop a collective bid for funding for infrastructure and
technologies to enable connectedness across our Partnership.
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The key to connectedness across our Partnership is through interoperability between systems and
the consistent adoption and implementation of standards that enable information to be shared. We
will link into other groups developing standards at a regional and national level to avoid duplication
of effort.
There are already examples where health information exchanges are being used to share clinical
information between hospitals and primary care and where integration platforms and portal
technology facilitate integrated models of care delivery and a more connected workforce. We aim
to build on these existing models and establish a federated model of four or five local health
economy hubs across the Partnership where acute providers, community, mental health, primary
care and social care work together to generate a patient-centred, integrated digital care record,
which can be shared with patients and professionals involved with their care. We anticipate that
organisations will come together locally to determine how they wish to work together on this
agenda and to agree the technologies they wish to adopt but expect one organisation, or a
consortium of organisations, within each local health economy to be able to take a lead role.
Our aim is to enable the use, analysis and application of information by supporting the creation of
these local health economy hubs, which must drive change. Connectivity between local health
economy hubs is necessary for complex pathways of care which cross geographic boundaries and
where specialist services are provided on a single site. UCLPartners will facilitate connectedness
between local health economy hubs.
The longitudinal digital care record centres on a patient and includes information that may come
from a number of different organisations or agencies, incrementally building a holistic record of a
patient’s interactions with health and social care providers. This does not mean developing a
“super electronic patient health record” where all information is stored in a single record, but having
a mechanism to push or pull specific data items from source systems so that they can be made
available as needed. We envisage creation of a core dataset, including demographics, past history,
medications, allergies, details of health and social care encounters, future appointments,
diagnostic test results and patient wishes, which can be shared when a patient’s care is handed
over between organisations or agencies and aligns with one of the Urgent Care principles “Ensure
information critical for my care is available to all those treating me4”. Information will only be shared
with users if they have a legitimate need to see it. This core dataset can be expanded and
configured to include additional specialty specific information, so that different groups can see the
summary of information that is relevant to them.
4 High quality care for all, now and for future generations: transforming urgent and emergency care services in England. NHS England,
June 2013
Action 3: We will define the architecture of a Partnership wide informatics platform,
underpinned by a small number of local health economy hubs, which will support
coordinated patient care with a longitudinal digital care record, patient engagement,
advanced analytics and research.
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This will provide information to enable care professionals to make an informed decision about the
most appropriate location of care, avoid the need for unnecessary admissions to hospital and
ensure information is available to help patients develop personalised care plans.
UCLPartners will take a lead role in helping to define and support adoption of consistent standards
for data and common interoperability standards that will facilitate connectivity between local health
economies and support local data collection using a range of mobile apps and electronic forms,
which can be linked into a patient’s electronic care record. We will help share the learning from
existing exemplars, facilitate wider engagement with these initiatives and help establish links with
pan London or other national initiatives which focus on similar objectives. Focus and working
groups will be set up to help organisations address the quality and completeness of their data as
this is recognised to be a current challenge.
We will support the development of minimum datasets for different clinical scenarios so that only
data required for a legitimate purpose will be shared, with the ability to trace data through the whole
lifecycle of intended use. We will use existing datasets, and link into other groups defining clinical
datasets across London or at a national level, when it is appropriate to do so.
Action 4: We will support definition, curation, publication and promotion of
datasets that improve handovers of care between care sectors and for pathways of
care that require connectivity between local health economy hubs, with initial focus
on cancer, dementia and integrated care.
Camden Integrated Digital Record
The Camden Integrated Digital Record (CIDR) was launched in April 2013 to facilitate data
sharing between 2 Acute Trusts, 1 Community and 1 Mental Health Trust, Camden Local
Authority and 30 General Practices within the Clinical Commissioning Group. The CIDR is
now used to share an agreed minimum dataset of information with members of the
multidisciplinary team and a small number of General Practices, with full roll out planned
later in the year.
The CIDR includes information from primary care records, acute activity from provider
Trusts, social care flags and contact numbers. Community Care and Mental Health data will
be added shortly.
The project was viewed and managed as a clinical change and support programme rather
than as an IT project. Experience from the project has demonstrated that technology exists
to enable sharing of information however clinical and managerial leadership to break down
traditional organisational and cultural barriers, and gaining the support of the local
community through extensive patient and public engagement, is key to success.
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UCLPartners will focus on ensuring information is available at handovers between care providers
or to support integrated care pathways, such as cancer, where a patient’s care is delivered by
multiple providers across our geography.
Adoption of common standards for recording and coding data within electronic health records
facilitates sharing of information between providers and enables data to be analysed more easily.
The Health Informatics Unit of the Royal College of Physicians was commissioned by the Health
and Social Care Information Centre to produce evidence and consensus based national standards
for the structure and content of clinical records. These standards are now being adopted by the
Professional Records Standards Body. The Health Informatics Unit of the Royal College of
Physicians has invited UCLPartners to work with them to test the implementation of some of these
record standards and to provide feedback about the proposed content.
Patient confidentiality runs as a common thread through IT enabled change and information
sharing. We will move forward in a way which encourages public participation and engagement in
everything we do and maintains the confidence of the public and clinicians.
We must develop a culture of trust with a duty to
share information responsibly ensuring we safeguard
patient confidentiality and manage healthcare
information responsibly in the best interest of the patient.
Most patients, clinicians and organisations accept there
are many legitimate reasons to share data but we need
to maintain the trust of the public and data controllers by
deploying transparent governance and privacy
enhancing technology and being explicit with patients
about what their data are used for.
We will support member organisations to develop consistent information assurance capabilities,
ensuring appropriate safeguards are put in place to protect confidentiality, and effectively embed
this culture across the Partnership so that information assurance is seen as an enabler rather than
a barrier to information sharing.
Action 5: We will work with the Royal College of Physicians and Professional Records
Standards Body to implement and maintain standards for the clinical structure and
content of patient records.
Action 6: We will establish an Information Sharing Board to ensure co-ordinated joint
working, sharing of best practice and to establish information assurance priorities for
the Partnership.
“I don’t care if I belong to primary or
secondary care: I just want a good
service that covers all my needs”.
Diabetic patient
17
We recognise that there are already a number of information sharing agreements in place across
the Partnership and local and regional groups, such as London Connect, whose focus is on
information governance and data sharing. Our aim is to facilitate implementation of a consistent
approach to information sharing across the Partnership and to build on links with existing groups,
where appropriate.
The Information Assurance Strategy will provide an overarching framework of best practice
guidelines that ensure access to health and social care information is correctly managed and
safeguarded, including creation, storage, transmission and destruction and highlighting
professional responsibilities.
An Information Sharing Accord will facilitate a consistent approach to legitimate sharing of personal
identifiable information between organisations for safe and effective delivery of care and will ensure
a proportionate governance approach is adopted across the Partnership for use of aggregated and
de-identified information for secondary purposes, such as management dashboards, clinical audit
and research.
There is an increasing recognition that healthcare data belong to the patient and should be shared
with them. We should engage patients in the use of their data, by being explicit about what we do
with it, and obtaining consent to use it where necessary and appropriate.
We will provide patients with access to their health
and social care information electronically so they
can contribute to the creation of their personalised
care plan, decide how they wish their care needs to
be met from their personal budgets5, letting them
decide who can see their information, enabling
them to contribute to their record using apps to
collect information, providing online feedback about
services in near real time and being able to see how
their local care providers compare to others
delivering similar services.
5 Draft Care and Support Bill, Dept. of Health, July 2012.www.dh.gov.uk/health/2012/07/careandsupportbill
Action 7: We will develop an Information Assurance Strategy and Information Sharing
Accord, with patient and public engagement.
Action 8: We will work with local health economy hubs to implement solutions that put
patients in control of their data and enable them to share their information with
providers of care across and beyond our Partnership.
“Without access to my hospital medical record and
only a particularly poor post-op discharge summary
to go on, my GP and I struggled to know what to do
next when symptoms flared up again. It caused
delays and meanwhile I got more and more unwell.
We both needed better information and information
flows between the hospital and primary care.”
GI Patient
18
There are projects already within the Partnership where patients are provided with their own
electronic health record and can choose who they share this with. Our aims is to present
information in a way that is meaningful to patients and should be personalised as much as possible
to align with their own preferences in terms of content, language and method of access. We will
work with patient and public groups, in partnership with a variety of research colleagues, to help
us understand what our patients need and want.
UCLPartners will build on work undertaken in Partner organisations, or in other regions, which
enables a more coordinated approach to care. An example of this is Coordinate my Care, which
enables patients’ wishes about their end of life care to be made available to care providers, thereby
avoiding inappropriate hospital admissions and respecting patients’ decisions about their care.
UCLP will work with the Coordinate My Care team to support the role out of the new system,
identify local champions, establish how the system’s consent model integrates with our emerging
models and help define and implement data standards to support end of life care and other long
term conditions as these evolve.
Objective 2: Use information to drive population health improvements Our aim is to maximise the clinical benefits from data collected along integrated journeys of care
to assess clinical outcomes and evaluate quality, equity and value at a population level, enabling
organisations to benchmark themselves against other members of the Partnership and externally,
Coordinate My Care
Coordinate My Care is a stand-alone system developed to
support the sharing of information between different
clinical teams looking after patients requiring palliative
care. Where implemented it has had great success in
supporting delivery of care and helping patients achieve
their desired place of death. Unfortunately
implementation has been variable across London due to
varying degrees of clinical engagement, limitation in
leadership, competing local systems and concerns over
the time taken to duplicate the entry of data into two
different systems.
There is new Coordinate My Care software in
development which will allow clinical information to be
shared between different systems, reducing concerns
over competing technology and removing the need for
duplication of data entry.
“As a paramedic and a
manager I know having a
service like Coordinate My
Care makes a real
difference to the quality
and cost of care”
David Whitmore. Medical
Directorate, London
Ambulance Service
19
as appropriate, including national and international centres of excellence
and to track trends in their own performance over time. We need better data and analytics to
understand, measure and evaluate changes in the system, capture service user experience, to
inform redesign of care pathways taking a whole system approach.
We must use information to identify opportunities to improve the services we deliver to our
patients and to ensure we are providing the best possible care based on evidence of outcomes
or processes, linked to resources we consume to achieve these. Every pound wasted through
lack of joined up information is a pound taken away from frontline clinical care at a time when we
all must maximise efficiency but maintain and enhance standards of care.
UCLPartners will support initiatives that enhance the tracking of patients and assessment of
outcomes at a Partnership level and that reinforce and power our regional safety collaborative.
The Quality and Value team are working with Partners to develop value scorecards that establish
system-wide alignment on the outcomes that matter most to our patients and populations, and to
measure and track these outcomes in parallel with cost and resource metrics across the care
pathway. Provider organisations and CCGs are supported to better understand their own
performance and track improvement over time, prioritising areas for local improvement by
facilitating comparison and learning from peers. The team is working with NHS England (London),
local Commissioning Support Units, Partner organisations and London’s other Academic Health
Science Partnerships (and international partners, such as Partners Health Care, Boston) to
develop value scorecards in priority areas, such as frailty, dementia and cardiovascular prevention.
Action 9: We will work with Partners, and the UCLPartners Quality and Value and
Education and Capabilities Programmes, to define and deliver a set of quality outcome
indicators that can be used to benchmark clinical outcomes, patient safety, service
efficiency and value based commissioning.
“Delivering improvement to patient outcomes and experience can only be achieved with the
support of evidence driven by excellent data. There are inconsistencies in the reporting of data to
national audits, to national registries and in the compilation and analysis of these rich
datasets. Having the ability to mine big data, to understand interrelationships and provide critical
analysis in a timely manner will help improve patient outcomes without doing anything
else. Placing value on the outcome and performance information as a means to drive peers to do
better will make a difference to how we plan and organise patient services, training and education
and population health.”
Dr Astrid Mayer, Clinical Information Lead, Royal Free
20
London Cancer has developed tumour
specific pathway scorecards to enable
pathway boards to identify areas for
improvement and to monitor the delivery of
change in the pathway. Data compares
activity across trusts within the Integrated
Cancer System and drives ambition to
improve by stimulating a desire to be as good
as peers. Staging completeness is an
important part of cancer care and
improvements are being driven by the
scorecard and data was published online. In
addition, including cancer waiting times data
for all trusts in the scorecard brought about
Reducing Delays Workshops and
improvement through an inter trust referral
portal.
The Clinical Effectiveness Group, has used the
results of data analysis to implement a multiple
component intervention in primary care to
increase the proportion of people with atrial
fibrillation on anticoagulants and to ensure that
patients and clinicians are better informed about
appropriate person focused diagnosis, treatment
and management of atrial fibrillation.
Anticoagulation rates improved by 3.5% per year
after the intervention in inner North East London.
UCLPartners are working with the Clinical
Effectiveness Group to adapt and diffuse this
work to support service improvement across 21
CCGs.
Our aim is to move from analysis of retrospective data to analysis of near real time information
from electronic patient records, monitoring devices and mobile apps which enables us to
automatically notify clinicians about patients with deteriorating clinical observations or laboratory
results, receive an alert when an intervention in a pathway of care has not taken place or to predict
where blockages in our whole system care pathways are likely to occur so we can reallocate
resource appropriately.
One of UCLPartners’ goals is to build strategic alliances to co-develop and drive implementation
of informatics solutions across the system and to share learning from other centres of excellence.
We will look to form working partnerships with other collaboratives and AHSNs across the country.
We should learn lessons from high performing organisations and health systems enabled by
informatics both nationally and internationally and look to other industries for inspiration.
“Reconfiguration of specialist cancer services was only
possible by examining system performance and
patient outcomes. The evidence pointed towards
improved outcomes when high volume centres deliver
specialist elements of care. Informatics is the key
enabling tool to shape and monitor system
improvements for better patient care. Through a data
sharing and audit, it was possible to identify areas for
improvement and prepare a sound case for change for
reconfiguring specialist cancer services. ” Mr John
Hines Pathway Board Director Urology
“The improvement in anticoagulation will make
substantial impact on reducing strokes. If this
process of using and sharing analysed data was
replicated nationally, over the next 3 years such a
programme could result in approximately 1600
fewer strokes every year.” Dr John Robson, GP
and clinical lead for the Clinical Effectiveness
Group
21
We have already formed an alliance with Scotland to learn from the national eHealth, patient safety
programme and collaborative research initiatives that have been established. The benefits of these
for safer patient care are well recognised by patients and clinical leaders across the country,
including secure tracked transfers between primary and secondary care, readily accessible clinical
information in emergency settings, and reduced complications and costs of long term conditions.
Integrated care, enabled by informatics, has already resulted in a 40% reduction in blindness and
amputation rates in patients with diabetes. We will use this alliance so that we can understand how
these initiatives can be adapted to meet UCLPartners’ requirements, avoiding the historic problems
of the “not invented here” syndrome for which the clinical imperative has no patience. This will
enable us to make more rapid progress achieving our ambitions to enhance clinical care at every
level, and along whole pathways of care.
UCLPartners is already linked more widely into a number of other regional improvement
collaborations and alliances. We will build relationships with organisations outside the Partnership,
such as Public Health England, National Registry Groups and the National Cancer Intelligence
Network so that we can maximise the use of national datasets for service improvement and
research.
Objective 3: Use the connected system to enable research participation
The informatics Strategy should support the academic ambitions of our Partners and our NIHR
research portfolio by enabling more rapid identification of potential research subjects through
interrogation of electronic health records, both diagnostic and narrative, across multiple providers
Our Partnership contains strengths across many Higher Education Institutes and providers and
our academic mission cannot be fully realised unless there is strong connection between research
and service provision.
Action 11: We will work with the research community to define principles and best
practice for data sharing for other medical purposes and research, focusing on
governance and public engagement, and will facilitate the establishment of a federation
of accredited safe havens across UCLPartners which will link to the Farr Institute
Action 10: We will form strategic alliances with UK and international centres that
share our ambitions to use informatics as an enabler of population health
improvement.
22
It is proposed that a small number of accredited safe havens should be established across the
Partnership for secondary use of NHS data. Where research studies require access to de-
identified NHS data this will be provided from these accredited safe havens, subject to patient
consent and approval by the local governance committee. This federated model enables NHS
organisations to maintain control of data and transparency of their use and to collaborate with
research groups to identify opportunities to improve data quality.
UCLPartners is leading the development and implementation of a national consent-for-approach
system to support dementia research as a deliverable of the Prime Minister’s challenge. Join
Dementia Research will enable patients and the public to provide their consent to be contacted if
they are eligible for clinical studies and for information held in their NHS records to be made
available for research.
We will use this initiative as a pilot for developing a unified consent model across the Partnership,
including the need for linkage across organisations so that patients are not approached more than
once.
Action 12: We will facilitate implementation of a unified consent - for- approach model,
enabling patients’ wishes relating to consent to share information with care providers
and researchers to be visible across the Partnership
“Pilot research suggests that the current process of consultant-to-consultant referral for initial
identification of patients for research costs about 21,000 hours of NHS consultant time to identify
the people necessary to recruit the 15,000 people recruited to NIHR dementia studies each year.
This is roughly equivalent to a consultant spending 12 minutes having a quality conversation
about research with every new dementia referral to an NHS memory clinic. Implementation of a
consent for approach model has the potential to radically innovate how consultants and patients
talk about research, and significantly improve the quality of that conversation and improve
patient experience across our academic health sciences centre/network”.
Piers Kotting, Assistant Director Dementia and Neurodegenerative Research Network
23
This model will be piloted in the field of dementia, with an exemplar project led with one of the local
health economy hubs in collaboration with the Farr Institute. This observatory will be the engine
of interrogation of our data and derivation of meaning from linked data sets which will help to focus
effort and resources on improving clinical services and health outcomes for patients with dementia,
one of the three priorities in NHS England’s Parity of Esteem Programme. The platforms,
infrastructure and governance underpinning the approach will be applicable for similar initiatives
relating to other disease types.
The Farr Institute will provide a focus for high quality, cutting edge research using electronic
health records, undertake and promote innovative linkage and analysis of large health related
datasets, including social and economic data, and build capacity in electronic health informatics
research.
Unlike most other sectors healthcare has been slow to embrace the digital era and explore how
petabytes of data that currently exist can be used to understand differing behaviours to illness,
opportunities to incentivise the public to focus on wellness and self-management and how we can
improve adherence with treatment. We aim to draw together ideas from machine learning,
statistics, algorithms, and databases, and test them safely and at scale so that we can create better
understanding of how to improve health outcomes.
Objective 4: Develop workforce capability
Developing a connected informatics platform across the Partnership should support a more
connected workforce and interdisciplinary team working across organisational and professional
boundaries that will underpin future delivery of better integrated care.
Action 15: We will explore opportunities to develop educational programmes for our
clinical workforce based on the competences described in eHealth Competency
Framework: Defining the role of the expert clinician.
Action 13: We will establish a data observatory, with the potential to link to other
academic institutions outside our Partnership.
Action 14: We will work with health informatics experts at the Farr Institute, CLAHRC
and across our HEIs, and will harness academic resources across the Partnership
including engineering, computer science, life and social sciences, to enhance
understanding of how to improve the health and wellbeing of our population using big
data.
24
Traditional clinical training has failed to equip healthcare professionals with the knowledge and
skills required to understand how informatics can be used to improve outcomes for patients,
clinicians or organisations or to work collaboratively as part of a multi-professional team. An
eHealth Competency Framework6 was developed as a joint collaboration between the Academy
of Medical Royal Colleges and The Scottish Government to define the knowledge, skills and
behaviours that are required by practising clinicians who have a role in eHealth and informatics at
a local, regional or national level. The framework covers a broad range of domains from generic
competences required by all, such as the safe and secure management of health information, to
areas of in depth informatics knowledge which may only be required by a limited number of
individuals. There are opportunities to work with UCLPartners Education and Capabilities
programme to develop training programmes for healthcare professionals, based on this framework,
to build capabilities and skills which enable staff to understand informatics and how data can be
interpreted and used, the organisational changes required and the decisional, organisational and
socio-cultural processes involved in the implementation and use of informatics to improve the
quality of care delivered and effect change to services.
Clinical leadership and strong clinical engagement are well documented determinants of
successful eHealth and informatics initiatives. An increasing number of organisations across the
country are recognising the benefits of having senior clinicians to drive clinical engagement and
promote the benefits of healthcare IT and use of information and are appointing Chief Clinical
Information Officers (CCIOs) to act in these leadership roles. Establishing a greater number of
CCIOs within our Partnership will be essential to maintain clinical engagement and to build
relationships between the clinical community and local IT teams. There is a similar, but as yet
unmet, need to establish leadership roles in research informatics and to nurture talented junior
individuals who will become our future informatics leaders.
We will work with North Central and East London and East of England Health Education England
partners to identify opportunities to create a central knowledge hub with our educational
academic Partners, mapped to specialty curricula, to ensure consistent availability of high quality
learning resources across the Partnership, including eLearning and simulation based learning
resources.
6 eHealth Competency Framework: Defining the role of the expert clinician. Academy of Medical Royal Colleges, June 2011
Action 16: We will promote clinical engagement in clinical and research informatics
through the development of leadership roles across the Partnership
Action 17: We will work with our Education and Capabilities team to create elearning
modules to facilitate standardisation, provide universal access and ensure equal
opportunities for learning across Partners and provide a base for objective
competency based testing appropriate to each level of professional development.
25
We will explore the potential to harness data on learning resources at each Partner site, develop
online systems to streamline internal and external competency based assessments and capture
information about trainee experience so we can monitor the quality of training being delivered
across the Partnership.
Data science is the emerging area that focuses on the principles, underlying methods, software,
and systems for extracting actionable insights from data. Support for data science matters,
because of the predicted future skills gap. UCLPartners as an institution and a Partnership has
opportunities to address these skills gaps, including development of an educational strategy and
the potential to offer high educational degree courses through Partner organisations.
Objective 5: Innovation
Our ambition is to create an inclusive UCLPartners Informatics Innovation Collaboration Centre
that will harness the strengths of NHS, academic and industry partners to develop a model of
informatics innovation that will not only deliver benefit for patients and citizens cared for by
UCLPartners, but will add value to health care organisations across the globe to improve health
care delivery.
The Innovation Centre model will consist of a small number of dedicated environments across our
geography for nurturing new informatics solutions, or new and innovative applications of existing
solution, creating an ecosystem essential for reliable and industrial implementation of cutting-edge
informatics and analytics solutions at scale across multiple health systems. A distinctive feature of
such a model is that solutions will support local health care providers to meet the needs of local
patients. The Centre will also focus on the diffusion of well tested solutions to provide system wide
benefits to patients, enabled by the models for dissemination which will need to be developed
within UCLPartners.
Action 18: We will work with our Partners to develop education and training
opportunities to fill the predicted skills gap in data science.
Action 19: We will support the creation of several linked Informatics Innovation
Collaboration hubs across the partnership, such as the Care City initiative, modelled
on international centres of excellence with a disruptive approach to informatics
developments, to model clinical pathways and visualise, model, prototype and test
possible health care delivery informatics solutions, creating innovations that will
transform health care delivery.
26
London is fortunate to have a rapidly growing community of hackers and programmers producing
health related mobile apps. There is huge potential to tap into this expertise. The Innovation hubs
will link with one of the world’s leading mobile app cluster that is geographically embedded within
our partnership.
The aim is to develop a co-creation environment for product development, with small, short-life
task focused teams that bring together clinicians, managers, academic computer scientists,
operational researchers, social scientists and industrial colleagues in the same environment to
develop informatics solutions. Local exemplar implementation will be the priority. Products will be
jointly branded, but with industrial resilience that would allow global commercial exploitation if value
is demonstrated. A founding principle is of revenue sharing between Partners, allowing re-
investment into product development as the number of product assets grows.
Care City for example will focus on developing solutions that enable patients with dementia or
frailty to be managed in their own local communities, however, there are opportunities to work with
industry partners to develop electronic patient records that meet the needs of service users and
apps that enable care professionals, patients or carers to capture information electronically and
integrate this with care records. We have enormous potential to work with industry to create
solutions that make a real difference to the safety and efficiency of care we deliver and that can
provide real benefits to our patients.
The UCLPartners Innovation capability will be intrinsically linked, but complementary, to the Farr
Institute London, acting as the focus for the application of world-leading informatics research,
transforming the way that UCLPartners, industry and other public sector partners collaborate to
improve the quality, reliability and efficiency of health care delivery.
The federated model of Innovation hubs founding principles will be to:
Focus on patient needs and values, and the pathways of care that patients follow across
all care settings and providers
Link with the regional clinical informatics hubs as closely as possible so that science
training and clinical care are fully integrated and mutually supportive
Create an outstanding national exemplar of a NHS/academic/industry informatics
innovation hub7- a visible and high-profile environment that engages with all stakeholders
including patient groups, charities, regulators, policy experts, politicians and industry.
Act as a informatics incubator within UCLPartners, a unique space for nurturing new
solutions, enabling them to grow, mature and evolve until they are ready for patients,
adopting the Mayo Clinic Centre for Innovation’s early SPARC programme philosophy
“think big, start small, move fast”
Act as an interdisciplinary forum for innovation and education
Develop solutions that have global applicability and potential for commercial exploitation
7Innovation Health and Wealth: Accelerating adoption and diffusion in the NHS http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_134597.pdf
27
Seek to leverage the combined purchasing power with the
partnership to extract greater value and reinvest revenues from commercialisation of
product assets back into the Centre and the Partnership
Objective 6: Governance and Leadership to Deliver the Strategy
This section outlines the governance and structure required to help us deliver our Strategy. A set
of guiding principles for our informatics partnership programme is contained in Appendix A.
If UCLPartners is to build a network which can serve as the catalyst to promote information sharing
and connectedness across the Partnership it must have support from a broad and diverse group
of stakeholders, including patient advocacy groups, health and social care providers, Chief
Information Officers, Caldicott Guardians, commissioners, research bodies, higher education
institutions and industry partners.
The Partnership work will be supported by:
UCLPartners Informatics Board
Short life working groups and interest groups
A small UCLPartners Informatics Programme Executive Team, who will be predominantly
embedded in local health economies and will act in an enabling capacity to support delivery
of the Strategy.
The structure and role of the informatics partnership will evolve with time and as different
requirements arise. It is proposed to maximise Partner engagement through co-creation and joint
development focused on clinically defined problems, incentives, opportunities and highlighting of
best practice.
Projects may be led by a single organisation or a consortium of organisations. The assignment of
a lead organisation to deliver projects will be critical to ensuring clear lines of accountability.
Roles and responsibilities may change over the course of a programme or project, as it moves
through initial concept and business case development to procurement/development, roll out and
benefits realisation.
While there may be a lead organisations, or consortium of organisations, on a project they will be
expected to act on behalf of the Partnership and will be held to account on this behaviour by the
UCLPartners Executive.
Action 20: We will establish an Informatics Board with representation from patients,
clinical and academic stakeholders groups and implement a governance model that
facilitates alignment of UCLPartners programmes with local strategies.
28
The governance structure outlined below aims to ensure effective representation from
stakeholders and provides a mechanism for prioritising focus on informatics solutions that are
approved by our Partners and seen to be of benefit across the Partnership.
There are a number of other Partnership activities relating to health informatics, which have been
shaped by academic funding opportunities and by their constituent Partners and collaborations.
To enable alignment and cohesive development of strategy across these Partnership structures it
is proposed that a new Health Informatics Strategy Coordination Group is established, which will
bring together the Chairs from each of the key partnerships and provide a forum for interchange.
UCLPartners Informatics Programme Governance Model
29
Appendix A: Guiding Principles
In order to accomplish its mission of catalysing responsible and effective data sharing, and to
establish a common framework and harmonised approaches, UCLPartners Informatics
Programme must establish a clear, prominent and unambiguous role in the Partnership. Achieving
our mission requires us to succeed in changing behaviour and having shared goals.
We have the best chance of succeeding if we:
Bring together a broad and diverse network of stakeholders who are aligned to a common
sets of goals.
Publically commit together to advancing progress in responsible data sharing.
Establish a common framework of approaches to enable Partners to achieve our goals.
Catalyse interactions and shared activity across the Partnership, in particular data sharing
networks and exemplar projects that drive creation of, and are supported by, shared
approaches.
The principles below outline UCLPartners proposed role in supporting informatics ambitions across
the Partnership and also seek to define areas where UCLPartners will not play the central role, but
will support Partner organisations to innovate and lead. These are based on the guiding principles
defined by the Global Alliance for Genomics and Health8, a coalition of leading biomedical
organisations who have formed a global alliance to harmonise approaches for the effective and
responsible sharing of genomic and clinical data, and build on the model UCLPartners has
implemented to support delivery of other programmes.
The role of UCLPartners is to:
Convene: Bring together stakeholders from different sectors and localities to share
information, establish best practices, and enable interoperability across the broadest
possible group.
Catalyse Sharing of Data: Play an active role in catalysing sharing of data among
members to advance the quality of clinical care as well as the positive impact of other uses
of data (audit, governance and research) on human health.
Create Harmonised Approaches: Identifying existing clinical and technical standards by
consulting experts and studying best practices; and where needed, developing new
standards and other interoperable tools and methods. These approaches (whether existing
or new) will be broadly disseminated, and result in a common framework for representing
data, for security and privacy, for ethics and regulation, and for interface with the clinical
environment.
8 Global Alliance for Genomics and Health http://genomicsandhealth.org/about-global-alliance/mission-core-principles
30
Act as a Clearinghouse: Share best practices, cross-pollinate ideas and learning,
and communicate with diverse communities. While we encourage participation by the
entire Partnership, even those who don't immediately engage will be given access to the
shared approaches to ethics and technical models for data sharing.
Foster a Culture of Innovation and Discovery: Lower the barriers to parties working
together and sharing data, enhancing innovation, and enabling discovery.
Commit to Responsible Data Sharing: Work together to promote the highest standards
for ethics and ensuring that citizens have the choice to responsibly and securely share
their data to advance human health.
UCLPartners will not:
Control Data: UCL Partners will support its member organisations to lead and deliver a
collaborative approach to sharing data for direct patient care and secondary uses.
UCLPartners will not itself generate, store, analyse or distribute data, or develop
informatics solutions, unless at the request of, and with appropriate agreement from,
Partner organisations.
Compete with Partners: UCL Partners will support and encourage grant acquisition
among the Partners, will collaborate on research and educational projects and will not own
intellectual property from co-created innovations, without knowledge of Partner
organisations.
Profit from Partners : Any revenues generated from commercialisation of informatics
innovations will be reinvested into the Partnership
Be Exclusive to Entities that Have and Share Data: Success will require active
participation of diverse stakeholders with various perspectives, including funders, patient
advocacy groups, technology companies and others who do not themselves generate or
analyse data.
Partners are expected to:
Actively participate: Partner organisations will nominate representatives who will
participate in working groups and interest groups and will contribute to the development of
standards and methods to support interoperability and data sharing and will participate in
leadership and decision making processes.
Align local strategies: Partners will align local strategies over time to UCLPartners
informatics programme objectives through continued involvement and timely awareness of
programme needs.
Collaborate: Partners should commit to the shared values of data sharing, connectedness
and innovation and work together to deliver benefits across the Partnership.
Facilitate local engagement: Ensure mechanisms are in place to facilitate engagement
from the broad clinical community and provide effective communication channels to local
stakeholders.