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.