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Informing Healthcare National Case, Second Edition January 2006

CONTENTS No. Title Page Executive summary iv 1. Introduction 1 2. Programme purpose, strategic aims and investment 1 objectives 3. IHC progress and achievements 3 4. Strategic context 3 4.1 Designed for Life 3 Lifelong Health Emergency and unscheduled care Elective care and diagnostic services Long-term conditions and chronic disease management Commissioning healthcare services 4.2 Making the Connections 5 Citizen centre stage Making the most of resources Engaging the workforce 5. Remit of the Informing Healthcare Programme 8 The National Architecture Conference Sept 2005 6. Healthcare Design 8 6.1 The Individual Health Record (IHR) 8 Content of the IHR Interacting with the IHR Priorities and development path for the IHR 6.2 My Health Online 11 6.3 Service Improvement Projects 14 Diabetes pathfinder: Cardiff - remote monitoring of blood glucose Diabetes pathfinder: Carmarthenshire - information sharing My Health Online pathfinder: St Clears, maternity services Test requesting & results reporting Transfer of care – clinical communications Unified assessment Patient identification Patients’ medication 7. National Technical Architecture for NHS Wales 18 7.1 Healthcare design principles 20 7.2 Technology principles 20

Informing Healthcare National Case, 2nd Edition January 2006

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8. Creating an all-Wales information services infrastructure 20 8.1 Access to IT and networks 21 8.2 Patient and carer empowerment 22 8.3 Readiness – demographic data quality & information 22 security 8.4 Access to Knowledge (A2K) 23 8.5 Access to Learning (A2L) 23 8.6 CaNISC 24 8.7 Tele-Health 24 8.8 iLab 24 9. National strategy for local Care Management Systems 26 10. Strategic relationships 29 Private sector strategic partners & development contracts 11. Governance 31 11.1 Informing Healthcare National Architecture Design Board1 11.2 Gateway reviews 11.3 International advisory group 12. Evaluation 33 13. Next steps 33 APPENDICES The Appendices are published online as separate documents on the Informing Healthcare website www.wales.nhs.uk/ihc 1. Summary of IHC National Architecture Conference, September 2005 2. The National Technical Architecture

1 Previously known as the National Design Authority


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Executive summary This is the 2nd Edition of the National Case for the Informing Healthcare Programme. It has been shaped and informed by consultation with stakeholders, particularly during the National Architecture Conference in September 2005. This Edition should be read in conjunction with the first National Case, which was published in June 2005. A considerable amount of work has been done since the first Edition and this document summarises progress and plans, but is not intended to be completely comprehensive in scope or detail. Informing Healthcare purpose, aims and investment objectives Our primary purpose is to create a set of information and infrastructure services that enable the provision of integrated, person-based information to be used to join up and improve patient care across the NHS and social care in Wales. Our strategic aims are to develop the information infrastructure to ensure the NHS in Wales can provide patient care that is continuous and integrated, closer to a patient’s home and well co-ordinated. Our investment objectives are to:

• Make a shared view of clinical care available across NHS Wales • Support and co-ordinate the re-design of working practices to deliver the full

benefits of Informing Healthcare • Create a ‘world-class’ technical infrastructure so that information can be

shared securely irrespective of organisational boundaries Strategic context The Informing Healthcare (IHC) Programme is at the heart of the development and implementation of the Welsh Assembly Government’s policies to improve healthcare services for people in Wales. Our implementation principles are determined by two key policies - Making the Connections and Designed for Life - which define our approach and priorities. Thus the focus on person-centred services underpins the IHC Programme, as do the principles of lifelong health; fast, safe and effective services; and world class care. We also place great importance on making the most effective use of our collective resources through engaging the skills and expertise of the workforce across NHS Wales. Healthcare design The IHC Programme has developed an implementation plan which hinges on information systems being re-designed to focus on the needs of the patient, rather than the organisations that treat them. Delivery will be driven by a commitment to learning from previous experience which has shown that a primary focus on benefits - rather than deployment of systems - achieved through an incremental approach to reduce risk, with design and development driven by clinicians and patients, stands the best chance of success. We also believe that it is essential to make a clear distinction between development


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activities and large-scale rollout to reduce risk, deliver value for money and promote good governance. The two major components of the programme’s healthcare design work are the Individual Health Record and My Health Online. The Individual Health Record (IHR) The purpose of the IHR is to support the overall health and care of the individual. It will provide information and support the activities of most importance to the overall health, care and well-being of the individual, across care providers and over time. It is intended to support communication and decision making between clinicians and patients rather than merely be a filing cabinet for all information. To this end, it is specifically not intended to be all-encompassing, holding all the information ever recorded anywhere about a person. Information within the IHR will concentrate on things like personal details; ‘care relationships’, including informal carers such as friends or family; health events, such as operations and appointments; and health status – a ‘snapshot’ of the individual’s current health and care. A central principle is that the health record will be ‘owned’ by the person concerned and overseen by a trusted third party, who will have a responsibility for the governance of the use of and access to information in the IHR. Requests to access information in an IHR will be governed by a set of rules, safeguarded by a set of security measures, and only granted to authenticated users. Over time, the IHR has the capacity to bring significant benefits to both patients and clinicians by making possible access to key information about a patient when it is needed. During 2006, we will be concentrating on emergency and unscheduled care in supporting out-of-hours GP services. The IHR will also have the capacity to bring benefits to people with long-term medical problems, increasing their ability to manage their own condition and treatment and we will be expanding our work into this area in due course. My Health Online ‘My Health Online’ is intended to be an internet portal for dissemination of healthcare information to patients across Wales. It provides a vision of how the NHS could support the citizens of Wales to take greater ownership for their health through electronic access their information. Eventually it will be developed as a means for patients to manage their transactions with the NHS, such as making appointments, dealing with electronic correspondence and the remote provision of relevant personal health information, through greater degrees of integration with NHS information systems in the future. This will take some time to achieve and will need to resolve complex medico-legal issues around data protection, security and accuracy of information. In addition, there will be many human factors such as access to a computer, IT literacy and personal preferences that will influence whether the vision can achieve the required benefits. In acknowledgement of these complexities, the Informing Healthcare Programme intends to take this development forward in discretely managed phases, beginning with a prototype during 2006 in a clinical setting, testing initially how mothers-to-be may wish to use it.


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Service Improvement Projects The IHC Programme will continue to work with local healthcare communities on a number of Service Improvement Projects (SIPs) which are intended to draw on the knowledge and experience of clinicians and patients to inform the subsequent specification of national technology solutions that will enable the delivery of aspects of Designed for Life. The SIPs focus on clinical need and improving patient care, and significant progress has been made since the first National Case was published. The main projects are:

• A diabetes project in Cardiff which enables blood glucose levels to be monitored remotely

• A diabetes project in Carmarthenshire to improve information sharing, and –

together with the Cardiff project - forms the basis for a national solution to support people with diabetes closer to home

• The St Clears maternity services My Health Online project

• A project to improve the efficiency of test requesting and results reporting –

so that vital information is available when and where it is needed, without unnecessary duplication

• A ‘transfer of care – clinical communications’ project to improve the exchange

of information between hospitals and GP practices when a patient is discharged

• A ‘unified assessment’ project to facilitate the transfer of information between

social care and the NHS in Wales. In addition, two further projects – on patient identification and patients’ medication – have been added to the IHC Programme as a result of requests by stakeholders in the National Architecture Conference in September 2005. National technical architecture for Wales In looking at the technology requirements for the IHR, it was clear that many of the capabilities required – such as a standard approach to communicating information and securely identifying a user - are also relevant for other applications. These standard capabilities have been grouped together to form the ‘national architecture’, which will provide an environment to allow both information and future national applications to be shared across the wide range of organisations in Wales. A fundamental principle underlying the development of the national architecture is that it is required to deal with a complex rather than a complicated system, so that it will be flexible enough to cope with changes in clinical and business requirements as healthcare services are reconfigured. The critical design and technology principles underpinning the national architecture were agreed with clinical and technical stakeholders at the National Architecture Conference in September 2005. All organisations across NHS Wales will work together either ‘in common by design’ or ‘in common by agreement’, but always allowing local activities to proceed by agreement so that we strike the right collective balance between standardisation


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and innovation. There is more detail on this in the body of this document and in Appendix 12 summarising the discussions and decisions of the Conference. Building the infrastructure The IHC Programme has already made considerable progress towards building an all-Wales infrastructure based on providing services to clinicians and patients from an integrated national perspective. This has been done through a series of ‘enabling infrastructure’ projects using a traditional design, build and operate cycle. Core principles of the IHC’s work in this area include: a corporate not centralist approach; incremental implementation; building from strength; ensuring readiness, security and confidentiality and delivering value for money. Some early achievements are:

• Negotiating national framework contracts agreements for Trusts to purchase IT equipment

• Securing a licensing deal with Microsoft to ensure best value for money for

NHS Wales by purchasing licences at a lower cost than would have been possible previously

• Improving the resilience and security of national and local organisation area

networks

• Beginning the work needed to create an all-Wales webmail service accessible for all NHS employees, starting with junior doctors

• Creating the foundation for an e-library that provides access to best clinical

practice guidelines and decision support

• ECDL computer training is being offered to NHS staff across Wales

• Improving data quality by making significant in-roads into the occurrence of duplicate patient records in local organisations

Care management systems Ensuring that effective Care Management Systems are in place to support clinical process change and integration with the IHR will be a corporate shared responsibility between IHC and local NHS organisations. The approach to this will be described in the National Strategy for Local Care Management Systems which will be developed during the first quarter of 2006. In considering the Individual Health Record and IHC platform, we have explicitly rejected the approach of developing a single integrated universal care management system to cover all patient care requirements and functions. The vision of a universal care management system for Wales providing a single system that could be used to support all providers, all individuals, all needs, all

2 Published online as a separate document on the Informing Healthcare website www.wales.nhs.uk/ihc


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facilities, all resources, all information, all processes everywhere in Wales for all time is superficially attractive. However, its over-riding weakness is that it would require the standardisation and structuring of the inherently complex environment of NHS Wales. Development, acceptance and deployment of such a system across all organisations in NHS Wales would be difficult, if not impossible, within reasonable timeframes. For this reason, the approach will be to adopt a more flexible and incremental approach to providing shared patient information – the Individual Health Record, supported by the development and implementation of a new Care Management Systems Strategy. Partnership working for most effective delivery Informing Healthcare recognises that it needs to access the additional capacity and capability – in business, applications and technical architecture - provided by the private sector in order to fulfil its objectives to improve patient care services. The IHC Programme firmly believes that engaging in open dialogue with all suppliers will increase our collective chances of success. In order to initiate this process, the Programme will be organising supplier events during the first quarter of 2006 to explain the basis of the programme in more detail and, just as importantly, to listen. Informing Healthcare will be looking to build strategic partnership(s) with appropriate organisations that fulfil the required criteria to work with us and help us deliver our agreed objectives. Design governance The National Architecture Design Board (initially known as the Design Authority, but now re-named) plays a key role. It was set up as a result of the National Architecture Conference and is significant in determining all design aspects of the IHR, care management systems, infrastructure and information governance. In addition, the IHC will follow the Office of Government Commerce (OGC) best practice and use appropriate gateway reviews for all projects, as part of our commitment to evaluation across all our activities. It is also planned to explore setting up an International Advisory Group to provide access to an international evidence base and provide independent comparative assessment.


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1. Introduction This is the 2nd Edition of the National Case for the Informing Healthcare (IHC) Programme and should be read in conjunction with the first National Case3, which was published in June 2005. It fulfils the IHC Programme commitment to update its strategic implementation plan at regular intervals to reflect stakeholder views and policy developments. The purpose of the document is to report progress and developments and set out in increasing detail the future plans for the IHC Programme and the investment profile required for successful delivery. The IHC Team has completed a considerable amount of work during 2005. This document is intended to be a summary of progress and plans and does not contain all the information that may be relevant to all stakeholders. There is more detailed information in the Appendices, which are published as separate documents on the Informing Healthcare website www.wales.nhs.uk/ihc It is envisaged that, as the Programme’s portfolio develops its detailed plans in support of the national and regional plans for Designed for Life, a Strategic Outline Case for the overall Informing Healthcare Programme will be produced, along with supporting business cases for the investment that will be required for delivery of the Programme’s objectives. The 2nd Edition of the National Case has been significantly shaped and informed by two national stakeholder events held by the IHC in July and September 2005; a rolling programme of visits to local NHS organisations; and discussions with a wide range of representative stakeholder groups across the NHS and the Welsh Assembly Government. 2. Programme purpose, strategic aims and investment objectives 2.1 Primary purpose The primary purpose of the IHC Programme is to create a set of information and infrastructure services that enable the provision of integrated person-based information to be used to join up and improve patient care across the NHS in Wales and with social care. 2.2 Strategic aims This will be achieved by accomplishing the following strategic aims through the development, deployment and maintenance of an information infrastructure that ensures the NHS in Wales can provide: - Continuous and integrated care for patients throughout their ‘journey’ throughout the health service and social care - Care closer to home for patients, keeping them informed about the progress of their care and supporting informed decision-making


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- Co-ordinated care so that contributors in the health service are working together for the benefit of the patient The IHC Programme will achieve its aims through a series of planned and agreed Service Improvement Projects (SIPs), each of which will have individual investment objectives, a business case and a benefits realisation plan. These projects are underpinned by a series of Enabling Infrastructure projects that are a necessary pre-requisite for the delivery of patient benefit through service improvement. The Programme will configure all of this activity into a portfolio that has an acceptable balance of risk, priority, investment, benefit and pace. 2.3 Investment objectives The IHC Programme has agreed the following investment objectives after extensive consultation with stakeholders across Wales during 2004 and these have been further ratified and refined by national stakeholder events and discussions in 2005. • To make a shared view of clinical care available across NHS Wales

This will be achieved through the creation and delivery of the Individual Health Record (IHR) which is focused on the patient, records essential data in both free-text and structured form, and supports care by providing information to those who receive care and those who look after them - whether they are professional, voluntary, family or friends. The healthcare environment is complex. The path along which an individual may pass while receiving care is often confusing and sometimes dangerous. The IHR will reduce these by making key information available to all those who are involved in that person’s care. It will form the basis of a national patient safety project with the objective of universal and unambiguous identification of individual patients. Early benefits are anticipated through supporting decision-making in emergency and unscheduled care.

• To support and co-ordinate the re-design of working practices to deliver the full benefits of Informing Healthcare This will initially be achieved through the delivery of a small number of strategic Service Improvement Projects (SIPs) aimed at evidence-based learning and specifying solutions suitable for national deployment across Wales. These will therefore help to inform and shape the strategy for the Individual Health Record (IHR) and the Care Management Systems (CMS) strategy and how the supporting technology is designed, configured and procured. The current Service Improvement Projects are:

• Patient identification • Long-term conditions, beginning with diabetes • Transfer of care - discharge and referral, requesting and results reporting • Medicines management • Unified assessment

The IHC Programme will also support NHS staff by providing national leadership in the professional development of health informatics and by creating and providing access to national knowledge services to promote best clinical practice.


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• To create a ‘world class’ technical infrastructure so that information can be shared securely irrespective of organisational boundaries This will be achieved through the creation and management of a national technical architecture capable of supporting the safe development and delivery of healthcare services to the people of Wales.

3. IHC Progress and Achievements

Achievements Informing Healthcare projects have funded and enabled IT equipment and networks to be set up in hospitals across Wales. The Network project alone has invested £4 million in ensuring the network infrastructure in NHS Wales meets appropriate standards of security, reliability and resilience. PCs have been purchased for each Trust to widen the access for clinical staff to information. The Duplicate Records Projects involve checking nearly half a million patient records which have been identified as being potential duplicates or have important information missing. For patients, this project will – over time - result in significant benefits by ensuring that vital patient information is recorded in the right place, so that when patients attend appointments, clinicians will have the relevant information and test results they need to make the best decisions about their patient’s illness and treatment options. For NHS Wales, the project will result in cleaner and more efficient patient index systems and will provide better foundations on which to develop upgraded systems. In addition, Patient Administration Systems are able to run quicker and more efficiently due to the removal of duplicate records. Achievements Training staff and facilities have been provided to all Trusts to ensure that staff have the necessary computer skills. Over 10,000 staff have registered to take part in ECDL training. Incrementally across 2005, as the Access to Knowledge project provided additional e-journals, staff have been able to access more content from more locations. Using the Athens authentication system, users are able to access the resources from home. This - coupled with increased PC access at work - has enabled better use of clinical evidence 4. Strategic context Since the first National Case for Informing Healthcare was published, two important recent Welsh Assembly Government policies - namely Designed for Life and Making the Connections - have had a significant effect on our strategic implementation plan. The implications for the IHC Programme are outlined below. 4.1 Designed for Life Since the publication of the first National Case the mechanism by which we will deliver a world class health service has been set out in Designed for Life.


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The principles outlined in Designed for Life will determine the approach Informing Healthcare takes and the design principles will set our own agenda and priorities. The Designed for Life design principles include:

• Lifelong health • Fast safe and effective services • World class care

The IHC Programme is being developed to support these aims specifically in the areas of emergency and unscheduled care, elective care and the management of long-term (and chronic) conditions. Lifelong health The delivery of My Health Online - which will provide the people of Wales with access to the important information in their own health record - will support people in taking responsibility for their own health, obtaining the information they want and empowering them. Emergency and unscheduled care Our plans to test the feasibility of an Individual Health Record, followed by its implementation in increments over several years, will – if successful - make the important health information on all people in Wales available in every situation where emergency or unscheduled care is provided. This will include A&E, out-of-hours services and also ambulances. This will have a major impact on safety, filling the information vacuum in which many of these contacts currently occur. Elective care and diagnostic services The IHC Programme will enable referral management though the Individual Health Record (IHR) and the national Care Management Systems (CMS) strategy. Our vision is that all current and future clinical and administrative correspondence will be stored and moved around electronically in a messaging system. However, we recognise that this will take several years, working in incremental steps, to manage the risks normally encountered in complex projects like this. In the long term, this work will speed up the referral process and enable the active management of the demand on the service and faster access to secondary care. These developments will support referrals management. The fast, accurate communication of discharge and out-patient information will be delivered by the same system and will eventually support effective discharge procedure and co-ordination with social care. In addition, Informing Healthcare will deliver the ability to order an appropriate diagnostic test from any care setting and view the result of these tests. This will enable the more complex patterns of care that are envisaged in Designed for Life to be deployed to a ‘safe and closer to home’ standard, as well as support the objectives of Project 2009 for the reduction of waiting times.


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Long-term conditions and chronic disease management The healthcare service changes set out in Designed for Life cannot be safely achieved without the deployment of information technology to optimise the care of patients. The Informing Healthcare Programme will support the care of patients with long-term conditions through national Service Improvement Projects aimed at designing ‘whole systems’ information and technology support that makes the best use of the all-Wales Tele-Health service network, call-centres such as NHS Direct Wales and home monitoring of patients This ‘whole systems’ approach will be integrated around individual patients through the Individual Health Record and My Health Online, supported by Care Management Systems. This will enable the identification of patients whose care could be improved and the steps that need to be taken to improve their care. It will also provide individual patients with access to their own health record, enabling them to take more control of their own care. The IHC Programme will, over time, provide patients and clinicians the ability to:

• See what has happened to the patient throughout their ‘journey’ – a view of the Individual Health Record

• Critically scrutinise information to take decisions to intervene with prompt

action through call centres, alerts and time triggers

• Communicate what is required to the patient and also amongst health professionals through electronic clinical communications and tele-health systems that support remote participation in case conferences

This model of provision is flexible and scalable to support clinical networks up to national level as required and is applicable to, for example, the care of diabetics and those with cancer. In addition, this will support the reconfiguration and remodelled services described in Designed for Life as well as National Service Frameworks, local programmes and regional clinical networks. Commissioning Healthcare Services The impact of the commissioning framework will rely heavily on the quality of the information on throughput and outcome available to the service and the public. The quality of healthcare services is a major plank of Designed for Life. Information is required for needs assessment, planning, benchmarking and evaluation of service performance. The Informing Healthcare Programme will enable the collection, collation and analysis of the more sophisticated information required to commission outcomes in patient care and it will achieve this by the incremental deployment of a national technology architecture across the NHS in Wales. 4.2 Making the Connections Many of the projects in the Informing Healthcare Programme support the implementation of Making the Connections – Delivering Better Services for Wales. A brief summary of how some of our projects are already contributing to its principles


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is included below and more details are contained in later sections of the document. The IHC Programme will be seeking further opportunities to contribute to the Welsh Assembly Government’s vision for public services as our activities move forward. Citizen centre stage My Health Online is an important component of the all-Wales national architecture and it is intended to be an internet portal for the dissemination of healthcare information to the population in Wales. This will contribute to the vision of how the NHS could support people in Wales to take charge of their health through electronic access to their information. Eventually, it will be developed as a means for patients to manage their dealings with the NHS - such as making appointments, dealing with electronic correspondence and the remote provision of relevant personal health information - through greater degrees of integration with NHS information systems in the future. My Health Online supports the vision of empowered, more independent patients taking responsibility for their own healthcare, and would take us into a world where patients are not relied upon to remember the medication they are on or have to repeat medical histories to every new clinician they encounter. Another initiative that supports the ‘citizen at the centre’ view of the world is the Individual Health Record (IHR). It is designed to support the overall care of the individual by providing the information most important to the overall safety, effectiveness, and efficiency of an individual’s care. This work is at an early stage of development and patient consultation is about to begin, but at present it is envisaged that the following information will be made universally available to patients and clinicians across Wales via My Health Online:

• Personal details • Care relationships • Information from health events • Overall current state of health

The aim of the Individual Health Record is to reconcile and integrate information at the time of care, so that patients are empowered by having the information they need to take part in decisions about their own healthcare. Making the most of resources The Informing Healthcare Programme held a National Architecture conference with stakeholders in September 2005 which – amongst other things - identified the issue of how the NHS in Wales should ensure that it is making the best corporate use of the national and local informatics staff to deliver information services that supported patient care. NHS Wales has a considerable variation in capacity and capability across organisations with no ‘benchmark’ or model against which the adequacy or efficacy of local services can be judged. The IHC Programme has recently commissioned an assessment of the current position so that this can be benchmarked against what would be considered to be best practice for an organisation of the size and scope of responsibilities of NHS Wales.


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Once an agreed definition of the services and capabilities needed to meet local requirements has been formulated, proposals for the best shape of service delivery to support the implementation of Designed for Life will be developed so that individual organisations can be reviewed and benchmarked against best practice. Engaging the workforce The Informing Healthcare Programme will provide national leadership and sponsorship of the professional development of health informatics staff across NHS Wales. This area of work will complement and enhance the proposed strategy for utilisation and deployment of health informatics staff in Wales highlighted in the above section and will concentrate on the ‘capability’ of staff including developing their knowledge and skills, their professional status, recognition, career development and progression. The aim is to develop the attributes which characterise a ‘profession’ and meeting needs identified by staff themselves, by health informatics leaders and by the Informing Healthcare programme and other informatics initiatives. In particular, this will involve moving towards a professional status for health informatics through professional registration via the UK Council for Health Informatics (UKCHIP), the rationalisation and implementation of professional standards (Health Informatics National Occupational Standards and others), the professional representation and support via professional bodies. In addition, the Informing Healthcare Programme is working very closely with the National Leadership and Innovation Agency for Healthcare (NLIAH) to identify the learning needs of health informatics staff and seek to meet these through achievement of appropriate qualifications, knowledge, skills and behaviours via education, training and continuing professional development, working with other NHS and external bodies such as higher education and professional bodies. This includes leadership and career pathway development, and the means to identify and make available the body of knowledge of health informatics, share good practice and provide a professional support network. In addition, Informing Healthcare is working with HR colleagues to ensure that the interests of health informatics staff groups are appropriately integrated into human resource initiatives such as Agenda for Change and the Knowledge Skills Framework and NHS Careers Marketing. Achievements The Informing Healthcare Access to Knowledge Project (A2K) is continuing to expand the electronic library for health on the Health of Wales Information Service (HOWIS). This follows the successful implementation of a wide range of electronic journals, textbooks and clinical guidelines representing an investment of £250,000 per year. The project has also produced a User Needs study and has funded local NHS Wales programmes in training and education. Following option appraisal work at Informing Healthcare national stakeholder workshops in July and November 2005, business justifications were approved by the National E-Library Editorial Board for Wales, for investment in full text e-journals which will be available to all staff by March 2006. The next step is to make it easier to find, sort, and retrieve information and this will begin by short-term improvements to the HOWIS e-library portal already underway, followed by the procurement of additional tools to improve access to knowledge in the clinical context.


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5. Remit of the Informing Healthcare Programme The IHC National Architecture Conference September 20054

This event involved a large number of key stakeholders from across NHS Wales who agreed a set of critical design principles - that would guide the development of a National Technology Architecture for the NHS in Wales and shape how corporate responsibilities - would be shared between the IHC Programme and local health communities in three broad categories. Information services would in future be developed:

• In common by design, • In common by agreement • Locally by agreement

Items related to the design of standards, messages and shared infrastructure fell primarily into the category of In Common by Design (often this will be IHC). The next largest portion of responsibilities - for example the Care Management Systems -were assigned to In Common by Agreement, where there will be shared responsibilities for delivery. In addition, there was overwhelming agreement that new national decision-making and governance function was needed to proceed with the National Architecture, namely a National Design Authority for NHS Wales - which has recently been renamed as the Informing Healthcare National Architecture Design Board. Other specific changes to the remit of the Informing Healthcare Programme have occurred with the inclusion of the National Tele-Health programme and team into the programme and the responsibility for managing the Service Level Agreement with Health Solutions Wales for networks and websites. 6. Healthcare Design 6.1 The Individual Health Record Underlying aim A central Informing Healthcare aim underpins the development of the Individual Health Record – to change the focus of health information systems from organisations to the individual patients they treat. In other words, to design information services around the needs of the patient – ‘Mrs Jones’ – rather than expecting ‘Mrs Jones’ to navigate her way through the various hospital clinics and departments involved in treating her. This is described in more detail in section 9. Purpose and overview The primary purpose of an Individual Health Record (IHR) is to support the overall health and care of the person to which the record relates. It will provide information and support the activities of most importance to the overall health, care and well-being of that individual, across care providers and over time. The design is based upon the needs of modern healthcare and, in particular, the shift from an institution-centred model to a person-based, or individual-centred, model of healthcare. In Wales, these needs are set out in Designed for Life and the Individual Health Record is one key component of the healthcare environment to be created within Wales. 4 See Appendix 1 for more detail.


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The other main types of information services are grouped together under the broad heading of Care Management Systems (Services). These play a key part in managing the detail of the care provided by institutions - such as hospitals and GP practices - and are intimately linked to the development of the Individual Health Record. This concept of collaborating, corporate information services is central to the design approach being followed by Informing Healthcare. Content of the Individual Health Record (IHR) The IHR will be implemented as a new set of information services. It is concerned with the information of most importance to overall care. It will, by design, not hold all of the information ever recorded anywhere about a person. Much information will remain solely within the relevant Care Management System. The information that the IHR will be expected to know covers:

• Personal details – includes, but is not limited to, ‘demographics’ such as name, date of birth and address. Personal details should grow to include perhaps special needs, primary language, important friends and relatives etc

• Care relationships - details of those care providers who are involved in the

individual’s care, including what may be called ‘informal carers’ as well as clinicians. This is an important distinction because, in many cases, the ‘care’ is provided by the person’s family or friend, who may also need access to the IHR

• Health Events - health events are the source of the information about the

individual’s health and care. They arise from care encounters – such as appointments with a clinic or consultant - and may reflect minor experiences through to life-changing occurrences. Important health events are reflected in current clinical communications, for example admission notices, referrals, discharge letters and some requests of tests and procedures

• Health status – the current view or ‘snapshot’ of the individual’s health and

care – including, for example, their current medications or problems Interacting with the Individual Health Record The IHR will be the place where information arising from health events is published when clinicians and patients wish to share it to support decision-making. Interactions are all in the form of the exchange of ‘documents’ that conform to a basic set of standards covering:

• Credentials and attribution of the document:

Provenance – how the document arrived Creator/scribe – who created/wrote the document Authorship – who is ‘saying’ what it contains Identification of the subject individual

• Purpose of the document


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• For documents that are ‘telling’ information to the IHR:

Health event-related information within the substance of the content Current status of the individual

• For documents ‘asking’ for information from the IHR

Specification of the required information and the substance of the query

• Control of use A person’s Individual Health Record (IHR) is owned by the person him/herself and is held on their behalf by the Custodian - a trusted third party. All requests to access the IHR must be from an authenticated user/source and use of the IHR is controlled in two steps:

• Authentication of identity • Determination of permissions

Permission to submit or obtain information will be based on multiple factors including:

• The professional and institutional role of the requestor • The nature of the request (content) • The expressed wishes of the individual • Express statements of a legitimate purpose from an appropriately verified

requestor All use will be subject to audit. Mis-use will be subject to the appropriate legal, employment and professional sanctions. Priorities and development path for the IHR These are determined from the following principles:

• Achievement of the earliest benefit from the information held in the IHR

• Information already held in a current information system (Care Management System) that could feed the IHR

• Are suitable for deploying in an IHR-related portal ie a dedicated web-based

application to allow basic use of the IHR

• Could provide basic encounter information through the use of an IHR-related portal

• The existing information and process that can yield information that could be

incorporated into an IHR The current preferred use scenarios are:

• Unscheduled care and, in particular, urgent care such as GP out-of-hours


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• Scheduled care when expected ‘internal’ information services are prone to failure – for example, when ‘the notes can’t be found’, or the referral materials are inadequate or unavailable, or when care depends on critical information such as test results

• Self-care – direct use of the IHR by the person • Long-term conditions and unified assessment across providers and over time

The current preferred information sources are:

• GP systems (there is no need to ‘simulate’ events to obtain patient information because there is no GP encounter communication at present)

• Existing communication associated with health events

• Limited information from targeted use of IHR-related portals in the preferred

scenarios The development and implementation of the Care Management System strategy will be a key component in improving the availability and quality of information to the IHR. This is another reason why the Service Improvement Projects in progress have been identified so that they can accelerate the availability of required information to the Individual Health Record. 6.2 My Health Online Overview My Health Online is an important component of the all-Wales national technology architecture and it is intended to be an internet portal for the dissemination of healthcare information to the population of Wales. It provides a vision of how the NHS could support the citizens of Wales to take greater ownership for their health through electronic access their information. Eventually it will be developed as a means for patients to manage their transactions with the NHS, such as making appointments, dealing with electronic correspondence and the remote provision of relevant personal health information, through greater degrees of integration with NHS information systems in the future. This type of development will encounter - and need to resolve - complex medico- legal issues around data protection, security and accuracy of information. In addition, there will be many human factors - such as access to a computer, IT literacy and personal preferences - that will influence whether the vision can achieve the required benefits. In acknowledgement of these complexities, the Informing Healthcare Programme intends to take this development forward in discretely managed phases, beginning with a pathfinder project that provides a live pilot system for user testing and involvement. Gaining understanding of how patients wish to use this type of system will be the core focus for the pathfinder project.


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Achievements Informing Healthcare has successfully delivered the first phase of the My Health Online project, to produce an initial prototype, with the first phase of functionality, for testing by patient groups. Moving to the next step - the planned maternity service prototype to test My Health Online in a clinical setting - is on target. Feedback from users during testing will inform future development of My Health Online. Further developments The vision for development of Health Services in Wales, as presented in Designed for Life, includes a requirement for development of public-facing health information systems to support the role of citizens in promoting their health - individually and collectively - and promote independence and service user involvement A Strategic Outline Case is being developed that sets out the My Health Online design principles to support lifelong health by enabling every avenue to promote healthy communities and empowering individuals to take responsibility for their own health. It will also support people at home - or as close to home as possible - to focus on helping everyone to achieve the highest level of independence possible. The project will work with patient groups to develop user-centred services, finding out what people really need and delivering these within available resources to make available accurate, accessible information that is most important to the delivery of their care. Scope The scope of the information to be included within this application is intended to be patient-entered information, moving in the future to greater degrees of integration with NHS information systems enabling patients to carry out online transactions with the NHS. It is envisaged that My Health Online could become the branded gateway for patients to access their Individual Health Record as this becomes available. The ultimate scope is expected to include:

• Giving patients access to elements of their own GP record, medication histories, referral letters, outpatient letters and health records generated through admission into hospital

• Exploring the possibility of patients having control over the information that is

held about them and having an opportunity to clearly see who has accessed this information

• Providing the opportunity for people to correct information when it is out of

date or incorrect


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Patient empowerment – questions to be addressed My Health Online supports the vision of empowered, more independent patients taking a responsibility for their own healthcare and would take us into a world where patients are not relied upon to remember the medication they are on or have to repeat medical histories to every new clinician they encounter. Clearly there are many challenges to overcome in moving towards this vision and a number of questions need to be answered before large-scale investment is made:

• How do we present information to people in ways that are meaningful?

• How do we overcome the fact that not everyone has access to, or the know-how, to use the internet?

• What types of information resources are deemed useful by different groups of

patients and which groups of people want to access information in this way?

• What information do people want?

• How do we ensure that the technology can link information between existing Care Management Systems and the Individual Health Record and My Health Online, and that adequate feeder systems are in place?

• How do we make sure that this electronically-held information is protected?

• What type of information do people want to record themselves?

• How do we make sure that the information that we provide to patients does

not cause unnecessary worry or confusion due to a patients’ lack of understanding or use of complex medical terminology?

Incremental development In line with the principle of incremental development that underpins Informing Healthcare, the pathfinder project is being undertaken in the following stages: Stage 1 - Build a prototype with sufficient functionality to enable small-scale testing with existing patient groups within NHS Wales:

• A simple patient portal (web-based) for individuals to input and record information about health, episodes of care and illness.

• Electronic links to NHS validated information resources for very small

numbers of people to enable the prototype to be tested

• User testing sessions with existing patient groups within NHS Wales Stage 2 – Test the prototype within a clinical setting using the system to support a low risk patient ‘journey’:

• A controlled pilot study using the system within a low risk patient journey, this is likely to involve additional development to support specific clinical requirements and ensure there is no risk to patients taking part in the study


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• Development of a method to authenticate both patients and clinicians

participating within the study

• Access devices for clinical staff to be able to use the system if these are not already available

Stage 3 – Draw together an evaluation report which includes the results of testing both stages 1 and 2, this will be used to inform whether further investment in My Health Online is justifiable:

• Evaluation reports from both stages one and two covering areas such as likelihood to use, barriers to use, development required for different patient groups. The evaluation should cover both people who are currently ill - for example, people with long-term conditions - and those who are generally well and healthy.

• A mapping exercise between the use and functionality of the My Health

Online prototype and the development of the Individual Health Record will be undertaken, testing compatibility and convergence of user views expressed within the pathfinder with the plans and priorities of the IHR programme. If this proves successful, then a full business case will be produced to required to justify the investment for an all-Wales solution that will be deployed as part of the national technology architecture

6.3 Service Improvement Projects Significant progress has been made in the Service Improvement Projects, which were identified in the first National Case and are intended to identify national information and technology solutions that will enable Designed for Life. In summary: a) Diabetes pathfinder: Cardiff - remote monitoring of blood glucose The project objectives are:

• To demonstrate that a proactive monitoring approach using remote monitoring technology can improve the health and reduce the associated risk of complications for people with diabetes

• To reduce the HBa1c of the overall patient sample by 1% - a reduction known

to be associated with better outcomes Successful completion of the project will bring about a risk reduction of 37% for micro-vascular complications (eg kidney disorders) and a 14% reduction in the risk of an MI (or heart attack). The aim is to establish a service to proactively monitor and advise patients who currently have uncontrolled diabetes. The information collected from patients will, in the first instance, be restricted to blood glucose readings. These readings will be collected and transmitted from the patient’s home or workplace to a centralised data base/clinical system, monitored by specialist diabetes nurses working to agreed clinical protocols. The anticipated service configuration is as follows, and discussions are intended with NHS Direct Wales to explore the possibility of call-centre operating of specialist nurses.


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Clinical Leadership is provided by Professor David Owens, and the project intends to include a patient group of up to 200 people within the Cardiff area, restricted to people who have been referred to secondary care and have HBa1C of 7% or over. Exclusions include patients with existing co-morbidities and patients who are pregnant. Consent to take part in this pathfinder project will be through explicit written consent as part of a consultation with the patient’s consultant physician. The project will run for a calendar year, with evaluation being undertaken at specific points during that time. b) Diabetes Pathfinder: Carmarthenshire - information sharing The Technical Proof of Concept (TPoC) project that preceded Informing Healthcare successfully demonstrated the technical ability to share information. However, it did not assess the clinical usability of clinical information held in different systems which is often different. Currently, clinicians rely on patients to link the information and there is a requirement for a register for all diabetic patients. This project complements the Cardiff Pathfinder project and together they form the basis for a national solution to support diabetes patients closer to their homes. There is also an important link to the Individual Health Record and the project will test the practicality of the role-based access model for the IHR The project objectives are: Establish an information system which provides all members of a clinical team with access to all relevant information for patients with diabetes.

• The project will cover all patients with diabetes in the Carmarthenshire area (8,000 - 10,000 people)

• The information will be used to support more cohesive integrated care across

primary, secondary and community care

• Opportunities to provide patients with access to this information may be explored once the information system has been delivered

Clinical leadership is provided by Dr Meurig Williams and, upon successful conclusion of both diabetes pathfinder projects, a business case will be produced to justify investment in a scalable national solution. c) My Health Online pathfinder: St Clears - maternity services The overall scope of My Health Online is detailed elsewhere in this document. This pathfinder project sets out to frame and answer some of the issues around providing patient access that will need to be addressed in a successful national implementation. The project objectives are:

• To create an electronic version of current patient held ante-natal and post-natal booklets.


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• To provide secure access to both patients and maternity teams looking to develop the system based on a number of trust processes

The pathfinder will initially focus on one maternity team (five midwives) covering the St Clears area. It will require remote access to the system for midwives and will begin to look at the issues of authenticating patients to access more sensitive health information. Clinical leadership is provided by Jane Manley, Senior Midwife from Carmarthenshire NHS Trust, and the focus of the project to date has been on requirements gathering and scoping the data set to ensure that the current duplication of data items is not repeated within the electronic version. In addition, there is an RCN midwifery IT representative engaged in the steering group for this project d) Test requesting and results reporting (TRRR) The lack of an all-Wales requests and results service leads to many inefficiencies and some dangers – for example, if the patient’s blood group is not known or important test results are not available - in the provision of healthcare in Wales and is a high priority to improve demand management. Many tests are duplicated, as the requestor has no knowledge of what has been asked for by others in differing episodes of care or care settings. The provision of patient identification information is often hand-written, illegible and incomplete. This leads to increased time spent confirming details, rejecting samples and delays in the giving of appointments, in addition to the time spent manually entering the information in to the relevant information system. The patient request and results information gathered will be a primary source for the Individual Health Record and other clinical systems. The system will allow organisations to monitor the usage diagnostic services that they provide and request across the current organisational boundaries. The project objectives are to specify, procure and implement an all-Wales solution which delivers:

• GPs with the ability to see all results for their patients • Requesting functionality • Linkage and consideration of the diagnostic services strategy, ie not based on

current organisational structures • Linkage to pathology modernisation and diagnostic imaging modernisation

projects A business case for the national procurement is currently being written. e) Transfer of Care – clinical communications (TOCC) The project objectives are:

• To implement an all-Wales solution allowing GPs and hospitals to exchange accurate, complete and appropriate referral and discharge information at the most appropriate time and place.


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• To ensure that systems procured are supported by a national specification and supplier evaluation process which all NHS organisations have been provided with an opportunity to contribute and engage

• To ensure that organisations in NHS Wales are supported through a process

of ‘readiness’ so that they are ready and able to implement the proposed solution.

Phase 1 (August 2006 – December 2006): The first phase of the project should represent the first phase of a national implementation of the solution. In this context, the services provided by implementing this first phase are essential and this phase should be considered as a proof of concept stage of a subsequent national implementation. To enable the implementation and testing to occur in a controlled environment, three areas have been selected to participate in phase 1. Cardiff & Vale, Pontypridd & Rhondda and Pembrokeshire represent the first areas across Wales to benefit from, and feedback on, the adopted Transfer of Care communications solution. Future phases (January 2007 – onwards): In the long term, three additional major developments are planned. First, the solution should be rolled out across all 501 practices in Wales. Second, the solution should be rolled out across all remaining Wales NHS trusts. Finally, the solution should be implemented across other participants in the communication network such as social services, tertiary services and community nursing. The Transfer of Care communications project team aims to deliver an implementation plan for all phases by August 2006 The transfer of care communications (ToCC) solution is a key step supporting the Designed for Life proposal to develop user-centred services and make the information within them available and accessible. The implementation of the ToCC solution will support the realisation of the Designed for Life design principles, specifically taking into account the principles of fast, safe and effective services. f) Unified assessment A Unified Assessment Project Board has been established to oversee the specific parts of the programme that see the linking of the summary social care record and the Individual Health Record. The membership of the Project Board includes representatives of Informing Healthcare, the Chief Nursing Officer, the Social Services Inspectorate Wales and a Heath Trust. . The Board will ensure that the proposed scheme is consistent with the decisions made by the Informing Healthcare Programme and the strategic plan for the development of ICT in Social Services Authorities – the Additional Component Proposals. In addition, it will monitor developments in both the social care and health sectors and, where appropriate, initiate schemes that may be more effectively pursued on a shared basis. The project objectives are:

• To link the social care and health networks to demonstrate connectivity and highlight any issues


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• To determine the information on an all-Wales basis that needs to be shared at the end of an in-patient stay

• To make the Welsh Administrative register and NHS numbers available to social services

Guidance covering the connection to the NHS Network has been developed and sent to the 22 Local Authorities for their approval. Work has been completed on the first phase of a nursing information needs study. The findings were that information is sourced from many assessments, most of which were not available at discharge. Use of NHS numbers and guidance on how to trace NHS numbers has been developed and implementation awaits local government approval to proceed. Two additional Service Improvement Projects were added to the IHC Programme at the request of stakeholders from the NHS at the September Conference because of the significant improvements that can be achieved in patient safety:

• Patient identification - clinical leadership will be provided by Dr Dafydd Thomas, ITU consultant at Swansea Trust, and the scope of the project will be mapped out during the first quarter of 2006

• Patients’ medication - clinical leadership has been requested from the

pharmacy profession and it is anticipated that a nominee will be announced early in 2006, with the project scope agreed during the first quarter of 2006

7. National Technical Architecture for Wales5 Over time, the Informing Healthcare Programme will be introducing a portfolio of national applications to help modernise healthcare in Wales – the Individual Health Record is an example of such a national application. In looking at the technology requirements for the IHR, many of the capabilities required are also relevant for other applications. For example, a standard approach to communicating information, a standard approach to securely identifying a user, a standard approach to deploying new applications into user environments etc. These standard capabilities have been grouped together to form the National Architecture. The IHR will use capabilities from the National Architecture as part of providing its patient-centred services. Hence, the National Architecture must provide an environment to allow both information and future national applications to be shared across the wide range of organisations in Wales. The scope and clinical requirements (now and in the future) represent a complex challenge for the National Architecture. Addressing this complex challenge requires a different approach from a traditional technology architecture approach. The contrast between these approaches is highlighted in the following table, which recognises that while building the technology is a complicated task, deployment to support clinicians and patients has to be carried out in the NHS operating environment, which exhibits all of the characteristics of a complex system.

5 See Appendix 2 for more detail.


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Complex systems always behave according to a set of simple rules and our approach to the national architecture and information services is guided by five simple rules to ensure that it remains flexible and capable of evolving:

• Use a services approach to provide features and applications • Ensure IHC information services are fast, reliable and secure • All communications are messages containing information documents and use

web services and XML standards • Use a federated design approach for architecture decisions • Enable a pragmatic and incremental delivery approach to the architecture

NHS Wales needs a communications infrastructure to allow information to be passed between care management systems to support detailed care processes and the national (IHC) information services (eg IHR). Integration using a messaging fabric approach provides increased scalability and flexibility compared to other options. This is because the message fabric allows the integration rules for applications to be changed independently of the applications, and similarly applications to be changed independently of the integration rules. The IHC message fabric is responsible for providing communications between all services in the IHC architecture and local systems: services send messages to the fabric and the fabric forwards messages on to their final recipients. Access to any IHC information service needs to be secure and controlled. The IHC platform security services will provide basic security controls for all services. In addition, specific information services will wish to add additional security controls – for example the IHR information service will add ‘custodian’-based security controls. Portals will need to interact with users, presenting information and receiving information. There will need to be standardisation of presentation, to provide a common look and feel across Wales. This will be achieved by defining standard templates for particular types of data; the definition of what these are; and how they will look will be part of a future detailed design, and will grow and change as the IHR develops. Portals and other Care Management Systems will use these wherever appropriate.


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7.1 Healthcare design principles • Derive the maximum benefit from existing clinical processes and supporting

systems • Minimise disruption to working practices while encouraging and enabling

desirable developments • Win support from healthcare workers and patients, and give them confidence ICT

can help • Establish a sound clinical platform for future developments • Derive data from clinical communications 7.2 Technology principles • Adopt a pragmatic and incremental delivery approach for the architecture • Do not inhibit the introduction of improved systems, but do not require wholesale

change before any progress can be made • Adopt a federated design approach • Architect for fast, reliable and secure services • Use a service-based architecture to enable future flexibility • Remain loosely coupled with the English Programme (Connecting for Health)

whilst being compatible and open to future use of solutions • Preserve structured information where already available and evolve to more

comprehensive structure data 8. Creating an all-Wales information services infrastructure6

The Informing Healthcare Programme has already made considerable progress towards building an all-Wales infrastructure based on providing services to clinicians and patients from an integrated national perspective. So far, this has been achieved via a series of ‘enabling infrastructure’ projects that have been moving through the traditional design/build/operate cycle. This approach has been taken because it fits entirely with the core principles upon which the IHC Programme was founded:

• A corporate not a centralist approach • A long-term investment strategy • An incremental approach to implementation • Building from strength • Building on standards • A strong project management culture

6 See Appendix 2 for more detail.


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• Ensuring readiness • Providing access for all • A secure and confidential service

The IHC Programme will continue to adhere to this method of working because it reduces risk and provides the best chance of delivering early benefits. It also avoids the possibility of the IHC becoming driven by the imperative to procure and deploy technology systems to the detriment of the social aspects of introducing new and improved methods of healthcare service delivery for the benefit of patients The portfolio of projects under the ‘enabling infrastructure’ banner is now beginning to reach a position of maturity where, increasingly, the funding and management arrangements will need to reflect longer-term service delivery focused on satisfying customers, as opposed to short term projects requiring short term funding streams. A summary of the IHC enabling infrastructure projects is outlined below. 8.1 Access to IT and networks Achievements Funding has been given to Trusts for the purchase of IT equipment from a National Framework Contract which includes resources to support deployment. Emphasis has been put on replacing existing terminals (particularly in laboratories), providing access for clinical staff and replacement of personal computers that cannot run modern applications. This will help prepare for any new systems within diagnostic services and the eventual deployment of the Individual Health Record in clinical settings. This project has already enhanced the baseline of local investment considerably and evaluation reports have highlighted significant benefits as well as increased value. In January 2006, negotiations were successfully concluded with Microsoft for a National Enterprise License to facilitate the deployment of database technology in support of the national architecture, as well as achieving considerable cost savings to local NHS organisations. An identical approach will be taken with other products for which national contracts would be beneficial to NHS Wales. A report has been completed on the evaluation of wireless networking on wards. Once this has been considered, guidance and potential funding to Trusts will be made available to roll this out across Wales. The Networks Project has completed a rapid remediation exercise for local organisation networks that has improved operations and quality of service. It is now moving towards providing a suitable platform to deliver a single national managed remote access service to NHS Wales with a choice of access methods, both fixed and roaming, consisting of Consumer Broadband, Commercial Broadband and GPRS and 3G. Strong links have already been established with the Broadband Wales initiative to ensure that the NHS contributes appropriately. Work has begun to design and build a secure all-Wales webmail service accessible for all NHS employees, beginning with junior doctors. This involves defining a suitable technical infrastructure, developing a costing model for use of service and agreeing a User Registration and Management Policy. The security of the network will be further enhanced by an agreed set of guidelines/recommendations for the installation and management of firewalls within NHS Trust organisations.


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8.2 Patient and carer empowerment The over-arching objective of this project is to provide patients and carers with consistent access to interesting, relevant, comprehensive and qualified health information. In particular, the focus will be on improving access to services, illness and disease management, treatment, prevention and screening to educate and promote the health of patients, carers and the public. Currently this information is provided via number of nationally and locally managed websites that are unconnected and unco-ordinated that need to be channelled through a single all-Wales Directory of Services that is easy to use, with service management arrangements that deliver to high standards of quality and reliability and enable patients to make informed decisions about their care. 8.3 Readiness – demographic data quality and information security The Readiness Project is aimed at putting in place whatever is required locally safely to implement Informing Healthcare services and systems. It has concentrated on making sure that staff have access to computer work stations; that network connections are resilient and secure; that information security is at a consistent level across all organisations; and, in particular, that the quality of demographic information is improved via the elimination of duplicate patient records. The project has put in place a strong and capable team of local IHC Project Managers that support local staff through training and communication. Improving the quality of demographic data is critical to the implementation of the Individual Health Record, so it is of long-term strategic importance to the IHC Programme and needs to be consolidated into a National Data Quality Service. In addition, the current project has achieved substantial benefits in a number of areas, such as:

• Measurable reduction in incidence of duplicate records • Measurable increase in the use of NHS Numbers • Reduction in the cost of medical records management • Reduction in staff time spent sorting out problems • Improvement in patient satisfaction • Fewer wasted appointment slots • Reduced risk of patient injury caused by non-availability of information

Achievements The IHC Information Security Programme has completed the procurement of training and reference material and provided Information Security and Confidentiality forums to assist in self certification of Trusts against international security standard IS0 27001. In addition, the GP Information Security Manual has been updated and intends to review practices and improvement plans by March 2006 and complete an independent audit of GPs against IS0 27001. It is an integral part of an all-Wales information governance service.


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8.4 Access to Knowledge (A2K) Achievements The Access to Knowledge project has procured a number of knowledge sources to provide clinical staff with electronic access to best practice guidelines. A national editorial board stakeholder board - chaired by the Deputy Chief Medical Officer – has been created and is steering the project during its current phase, to create an all-Wales electronic library and knowledge service. 8.5 Access to Learning (A2L) The Access to Learning project aims to provide education, training and development in health informatics for all staff employed by or contracted to NHS Wales. The initial priority for the project was to allow staff to obtain the skills and knowledge required to enable them to be more proficient in the use of IT systems. Following an all-Wales training needs analysis, it was clear that current IT skills within the NHS were not sufficient to meet the objectives of Informing Healthcare. The European Computer Driving Licence (ECDL), was therefore adopted as the reference standard for achieving basic IT skills within the NHS in Wales. The key objectives for this phase of the project were:

• To provide training and ECDL co-ordinators to NHS Organisations • To provide facilities for Trusts to do basic IT skills training (rooms and

equipment) • To provide suitable online training and testing facilities. • To provide marketing materials to allow the promotion of ECDL in NHS Wales

organisations Achievements These facilities are now largely in place and training is being delivered in all NHS Wales organisations. The first major activity in the delivery of health informatics (HI) training and education for all staff was a short assessment of current skill levels. This showed a significant need for further HI training and development for most staff. The study is continuing and will define the training required in terms of content and delivery mechanisms and what is required to support delivery in NHS Wales organisations. It is probable that e-learning will play a significant part in training and education delivery and will entail the procurement of an e-learning shell with appropriate HI content, although this will not be the only delivery mechanism. In parallel with the scoping study, a number of ‘quick wins’ will be undertaken to resolve immediate issues - in particular confidentiality training - and to create awareness of the need for HI knowledge and skills at all NHS levels with an emphasis on leadership awareness. The project will also be working with higher education and the Welsh Assembly Government to facilitate expansion of basic IT and health informatics training and education in higher education, so that staff enter the service with the appropriate knowledge and skills.


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8.6 Cancer Network Information System Cymru (CaNISC) CaNISC is developing improved communication links for the treatment of cancer patients in Wales. This includes the development of:

• An electronic cancer record to support patient care across organisational boundaries in Wales

• A data source for other healthcare organisations in Wales

• The means for quality control of cancer care by clinical audit and monitoring

of national standards The project delivers a single, specialty specific, health record for people in Wales diagnosed with cancer and is accessible through the NHS network by authorised healthcare workers. This permits 24/7 accessibility of the clinical record to support networked cancer care and covers both emergency and elective situations. Information is entered into CaNISC by cancer units and centres. Entry can be online during clinical interactions, electronic by integration with other IT systems or following data collection using dedicated proformas. The project is continuing to develop the system in line with the National Architecture and is piloting the use of electronic information to support multi-disciplinary team meetings. It is also the basis for testing the use of information in clinical settings and for audit. 8.7 Tele-health The Tele-health team has been promoting Telemedicine across NHS Wales through:

• A programme of demonstrators • Establishing a videoconferencing service • Developing a strategy for future deployment of telemedicine

The telemedicine demonstrators looked at the feasibility of telemedicine solutions that could eventually be implemented within NHS Wales. The Welsh Health Video Service (WHVS) has been established and the current programme utilises the investments made in this infrastructure. An achievements and opportunities report will be developed to identify the future uses of Telemedicine and tele-care applications. These future applications will support the service improvement projects and the bringing together of health professionals for multi-disciplinary team meetings that would otherwise be impossible to organise. 8.8 i-Lab The Royal College of Physicians' Information Laboratory (RCP iLab) was set up to evaluate how Patient Episode Database Wales data could be used to support individual clinicians in the course of appraisal and re-validation. In doing so, the iLab has engaged clinicians in the processes of data collection and validation, attending to local data quality issues arising from examination of the data.


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The specific objectives of the study were to improve patient care and reduce risk by improving the quality of the clinical record, used as the source of routine data, through:

• Increasing clinical interest in the validity and use of routine data

• Supporting clinicians in their information needs

• Highlighting existing issues surrounding the collection and clinical validation of routine data at a local level

• Exploring how routine data can most effectively be made available to

clinicians

• Publicising lessons learned from the iLab pilot project to the wider community Following visits to the iLab, 68% of clinicians also stated they would use some aspect of the data in support of their next consultant appraisal. Future work of the RCP iLab will concentrate on widening access to iLab expertise by incorporating the lessons learned from the study into educational tools for clinicians and trust information staff. The iLab will also continue to work closely with specialty groups in order to derive clinically relevant and robust analyses at specialty level. On the basis of the work highlighted above and the previous sections in this document, it is clear that in practice the future components of the national infrastructure for NHS Wales will include - but not necessarily be entirely restricted to:

• Broadband network • Email service • Registration authority • Security services • Messaging services • Tele-health video conferencing service • National e-library • All-Wales smartcard • Nationally licensed database technology • Data management services • Data quality services • National gateway to Connecting for Health • Directory of services for patients • Information governance service

These building blocks should be considered as a cohesive strategic entity as the Informing Healthcare Programme creates the service-orientated architecture that will support the provision of future healthcare services as set out in Designed for Life. A Strategic Outline Case will be produced for the national architecture, along with accompanying business cases for the creation and deployment of new national information and infrastructure services, as and when they are required.


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9. National strategy for local care management systems Information systems in the NHS have traditionally been developed in, and are ‘owned’ by, local organisations that are responsible for providing healthcare services. Their purpose is to manage and document the detail of the ‘caring’ by supporting clinical provider tasks such as prescribing. These systems also enable resource management and scheduling - eg admitting, transferring and discharging - as well as documenting in detail the care given to an individual. They are a vital part of the process of improving clinical processes eg fewer prescribing errors. Unfortunately, the piecemeal approach to investment and development means that many systems are paper based, and those that are electronic have poor capability to share information, so communication with the wider healthcare information environment is severely limited. The National Architecture Conference in September 2005 identified that if ICT systems were truly to support a patient-centred view of healthcare design, then it was essential that local developments occurred within the context of a national IHC strategy. This section outlines the principles adopted in taking this forward to integrate with the Individual Health Record and the National Architecture. The delivery of integrated patient care is highly complex because three perspectives need to be coordinated simultaneously to support a patient care ‘event’:

Current Care Management Systems (CMSs) are based around institutions and focus on supporting the facilities and care provider perspectives (eg hospital systems, GP systems):


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and so are only able to provide limited support for the patient perspective. The Individual Health Record represents a new shared system across Wales that will ensure that care is co-ordinated and coherent across the care ‘journey’:

In other words, the Individual Health Record can be viewed as a new system to ‘run Mrs Jones’ and provide information and services centred around the individual. The Individual Health Record does not replace the existing estate of care management systems (CMSs) in NHS Wales, instead it complements their capabilities to provide an overall patient care context to inform individual patient care events:


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To ensure that effective Care Management Systems are in place to support clinical process change and integration with the IHR will be a corporate shared responsibility between IHC and local NHS organisations. The corporate approach to this is described in the Care Management Strategy which will be developed during the first half of 2006. To address the healthcare challenges identified in Designed for Life (effectiveness/ quality/safety; efficiency/cost /capacity and patient satisfaction), healthcare in Wales needs to develop a new model. The Design Brief for the IHR outlines how the Designed for Life challenge means that patients will increasingly face a life of handovers between care providers during their care journey. These handovers cause problems because current patient information is centred around institutional systems within the care providers and a limited ability to share patient information between health encounters along the patient care journey. The Individual Health Record (IHR) will improve the sharing of patient care information and provide a new environment, enabling patient information to become centred round the patient. Hence it breaks patient information (relevant to their overall care and care journey) out of the institutional systems and into a new shared Individual Health Record environment. In considering the Individual Health Record and IHC platform, we have explicitly rejected the approach of developing a single integrated universal care management system to cover all patient care requirements and functions. The vision of a universal care management system for Wales providing a single system that could be used to support all providers, all individuals, all needs, all facilities, all resources, all information, all processes everywhere in Wales for all time is superficially attractive. However, its over-riding weakness is that it would require the standardisation and structuring of the inherently complex environment of NHS


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Wales. Development, acceptance and deployment of such a system across all organisations in NHS Wales would be difficult, if not impossible, within reasonable timeframes. For this reason, the approach will be to adopt a more flexible and incremental approach to providing shared patient information – the Individual Health Record, supported by the development and implementation of a new Care Management Systems Strategy. 10. Strategic relationships Private sector suppliers The Informing Healthcare Programme manages a portfolio of projects that will, over time, build a set of national information and infrastructure services that support the delivery of healthcare in the NHS in Wales. The Programme has recognised that it will need access to the additional capacity and capability provided by private sector suppliers. This expertise will need to be deployed across three main areas:

• Business architecture – understanding and supporting the processes of patient care

• Applications architecture – developing and deploying information systems that

support clinicians in decision making and the management of patient care

• Technical architecture – management and delivery of core, business critical infrastructure services

The IHC Programme is seeking to develop a long-term strategic partnership with the suppliers who can deliver solutions in accordance with the agreed principles for healthcare and technology design. The Programme is also intent on a clear distinction between:

• Client-side support - in which external organisations will work with NHS Wales experts on strategy, design, feasibility, prototyping, specification and quality assurance

and

• Supply-side delivery - where external organisations will work with NHS

organisations on development, deployment, change management, service management and benefits realisation.

The selection of strategic partner(s) is one of the most important choices facing the IHC Programme and the intention is to:

• Create a long-term relationship that is flexible enough to respond to the changing requirements of patients and clinicians and provides all health communities with access to specialist expertise.

• Enable development activities to be carried out in the right environment,

allowing full use to be made of local expertise and innovation which can then be turned into an ‘industrial strength’ solution that can be rolled out nationally


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• Provide demonstrable value for money in the development, procurement and

deployment of national and local information and infrastructure services It will not be based simply upon the procurement and deployment of information systems but the creation, management and maintenance of a set of national services. The IHC Programme is currently developing its procurement strategy, but successful service providers will:

• Have a strong track record in this type of deal and accept the principles of co-management

• Be a good cultural fit with IHC and be willing to embrace our 'high

performance' culture

• Demonstrate an understanding of the healthcare industry and the ability to demonstrate they have delivered in the past

• Be able to support the project post delivery

• Be adaptable to IHC needs and enable business and technology innovation

• Have the ability to share risk which enables joint risk management

• Have timely access to appropriate resources

• Have a track record of delivering on time, on budget, at the right pace

• Be experienced in delivering patient benefits

• Share their long-term financial plan and business model

Healthcare is a highly complex environment, and changing the way in which services are delivered is an inherently risky business - not least for individual patients. However, deploying useful, usable, affordable technology supported by proper training and staff development has the potential to achieve enormous benefits for the people of Wales. The IHC Programme firmly believes that engaging in open dialogue with all suppliers will increase our collective chances of success. In order to initiate this process, the Programme will be organising a number of supplier events during the first quarter of 2006 to explain the basis of the programme in more detail and just as importantly to listen. Details of these events will be published on the IHC website during January and February.


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11. Governance 11.1 Informing Healthcare National Architecture Design Board7 The Informing Healthcare National Architecture Conference in September 2005 identified the requirement for a national function to develop the healthcare and technology design of the national architecture. The original recommendation was to create an ‘All-Wales Design Authority’ as this is standard terminology in the world of information systems development. However, to avoid any potential confusion that this might cause in the wider NHS - where the term ‘authority’ has connotations of a statutory organisation - we have changed the title to the Informing Healthcare National Architecture Design Board (NADB). There will be no change to its purpose and operating principles - which will remain as agreed at the September Conference - and it will continue to be directly accountable to the Director, Informing Healthcare. The remit of the National Architecture Design Board is:

• The NADB will perform the design work for those processes and ICT functions that are to be delivered corporately across NHS Wales. It will be the steward of the design decisions, and take steps to ensure consistent implementation of the design decisions

• The NADB is a group of experts in health care and ICT design who are

brought together to make the collective decisions that are needed to make the ICT work consistently across the whole service to support individual care

• The NADB gains its authority from the expertise it possesses and the

continued support of the clinicians, managers and IT professionals in Wales. Further authority is gained through its role in the approval process for ICT business cases, particularly in the areas of strategic fit and compliance with ICT design

• The NADB is supported by the Informing Healthcare Design Team -

comprising a mixture of healthcare and technical design experts - which produces the detailed work and options. They will liaise widely with clinical and technical staff throughout Wales to ensure the options and proposals put forward are robust

The NDAB will develop a work programme to look at, amongst other things, the following areas:

• The Individual Health Record, eg: Security, control and consent model ( for the IHR and any clinical system in Wales) Record structure Messaging system

7 Previously known as the National Design Authority.


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• Care management systems, eg: PAS replacements Identify the correct patient consistently Ordering a test eg pathology x-ray etc

• Infrastructure, eg:

Overall design philosophy – services, messaging and coupling Authentication system Digital signing

In developing design in these areas, the Design Architecture Design Board will need to apply a set of principles. The following design principles have been adopted as a result of the IHC September 2005 Conference:

• ICT design is directed by healthcare design

• ICT and healthcare design are done together

• The design elements are services

• Common services is the default position for the design

• The healthcare design used will be based on the universal core processes common to all care settings. This will deliver basic services and flexible deployment and also enable integration when this is required.

• The design must enable perpetual reconfigurations in care delivery and the

interface between heath and social care

• The design must take into account ongoing maintenance and operational requirements such that total cost of ownership to ensure it is affordable

11.2 Gateway reviews The IHC Programme will adopt Office of Government Commerce (OGC) best practice and utilise appropriately constituted gateway reviews for all projects. In addition, the entire Programme will be subjected to regular reviews of strategic direction (‘gateway zero’). The next one will be carried out during the second quarter of 2006. 11.3 International advisory group The IHC Programme will explore the possibility of creating an advisory group of international experts, well respected and recognised in the field of health informatics, to share international experience in the development of personal electronic health records with the NHS in Wales. We will hope to include people, particularly senior clinicians, with operational experience of the successful implementation of personal electronic records at a national level.


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The objectives of the group will be to:

• Provide an external international evidence base of current thinking for the Informing Healthcare Programme

• Provide the Director, Informing Healthcare with an independent comparative

assessment of the Programme’s progress against international experience and good practice

• Share group members’ experience and developments with NHS Wales staff

and vice versa, possibly through an all-Wales national conference 12. Evaluation This document illustrates the commitment of the IHC Programme to embed appropriate evaluation and review activities within every project. However, it is also important that a strategic assessment of the Programme’s activities is carried out in parallel with its operational activities, and we will seek during 2006 to set up a relationship – probably, but not necessarily exclusively, with one or more academic institution - to carry out formative assessments of the programme’s activities. 13. Next steps The third edition of the Informing Healthcare National Case will be produced late in 2006. If you have any comments on the 2nd Edition of the National Case, please email [email protected] The 2nd Edition is being translated into Welsh and will be available online on the Informing Healthcare website on www.wales.nhs.uk/ihc


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