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Date Wednesday, 09 September 2015

Presenter Clare Parker – Chief Officer

Author Mike Davies, Interoperability IT Consultant, NHS NW London

Responsible Director

Andrew Burgess, Director of Contracts, Performance and Procurement, NHS North West London

Clinical Lead CCG GP IT Lead – Dr Simon Gordon

Confidential Yes ☐ No Items are only confidential if it is in the public interest for them to be so

The Governing Body is asked to note: 1. The Vision and Case for Change contained in the attached paper 2. The progress to date with the Care Information Exchange (CIE) Programme, as set out

in this cover paper 3. The summary of discussions at Governing Body Seminars held during July and August

2015, as set out in this cover paper 4. The risks and mitigating actions to the delivery of CIE, as set out in this cover paper 5. Clinical Commissioning Group (CCG) responsibilities and actions to progress the

Programme during 2015/16, as set out in this cover paper.

Background

The North West (NW) London CCGs’ Collaboration Board requested, on 25 June 2015, that the attached paper be presented at CCG Governing Body Seminars. The paper has been presented to six of the eight Governing Body Seminars, with Harrow CCG to follow on 15 September, and the August Seminar in Ealing to be rearranged.

For some CCGs, the paper has also been presented at CCG IT or Transformation Sub Committees, before being taken to Governing Body seminars.

This Cover Sheet summarises the recommendations in the paper and provides an update on the main themes, including risks, which have emerged in these discussions.

Vision and Case for Change

The attached paper sets out a Vision and Case for Change for the development of a Shared Care Record between the organisations that deliver care in NW London and the citizens who receive that care, to be achieved through a number of initiatives including the NW London Care Information Exchange (CIE) Programme.

It explains the strategic context for organisations’ local IT transformation projects and requests their support for a wider pan-NW London programme. The paper was approved by

Title of paper Update to Governing Bodies – North West London Care Information Exchange

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the Imperial College Healthcare Partners (ICHP) Partnership Board on 12 June 2015. The ICHP Partnership Board supported the strategic direction proposed in the paper and agreed that:

• Interoperability is an essential objective for the NWL care economy as we move towards better integrated care – it is not a question of whether it needs to be implemented, rather how and when.

• Beyond the current CIE project, an operating model and funding will be required for sustainable long-term interoperability. What is needed is not a traditional business case to decide whether or not to go ahead, but an analysis of the options, detailed proposals, associated costs and potential funding approaches. A proposal should be developed for this next stage – scope of work, timescales, deliverables and milestones.

• There is a need for system-wide oversight of the Interoperability programme to complement existing governance (CIE Steering Group, NWL Design Authority, NWL IG governing group, CCG Collaboration Board): a strategic steering group should be established, representing CCGs and providers at an executive level. This would ensure commitment of all partner organisations to the clinical process changes, organisation development and financial implications of implementing interoperability – both the immediate CIE project and the longer term programme. Terms of Reference have been drafted for this group and will be circulated shortly.

CIE Programme Progress Since the attached paper was written, the CIE programme has progressed as follows:

• Three early adopter projects have been approved: a Diabetes pathway led by Hammersmith & Fulham CCG, with Imperial Healthcare and Chelsea & Westminster acute Trusts; sharing of Integrated Care Plans for patients over 65 led by Hillingdon CCG with all local providers, including social care and the third sector; and Paediatrics and Child Health services in Ealing. Three further early adopters remain to be selected – ideally one will be in the area of integrated care for mental health.

• GP IT systems: this is the critical source of data for the CIE. Discussions have started with both TPP and EMIS, but progress has been very slow, and it is not yet clear when a workable interface to the CIE will be available.

• Acute Trusts: the CIE team is engaging with all the NW London acute providers, and has received positive responses from Imperial and LNWHT (both expect to be able to share data with the CIE from October 2015) and Hillingdon Hospital (February 2016). Responses are awaited from Chelsea & Westminster, West Middlesex, Royal Brompton and Royal Marsden. UCLH is unlikely to participate at this stage.

• Other providers: discussions are progressing with the 111 service and West London Mental Health Trust, which is looking at a link between RiO and the CIE. No commitments have yet been received from other Trusts or their suppliers regarding connectivity to the CIE.

• Work is continuing on information governance to support the CIE.

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Update from GB Seminar Discussions

Overall, there was strong endorsement for the objective of a Shared Care Record from Governing Body seminars and other CCG meetings, where the attached paper was discussed. The following observations were made:

• There is certainly a benefit from replacing the current paper-based information flows from providers to GPs with electronic messages, which existing CCG-led initiatives (Diagnostic Cloud, Electronic Discharge letters, common SystmOne system in CWHHE) will go some way to address. Significant gaps will remain, e.g. between primary and acute care, health and social care, primary and community/metal health in BHH, and between acute providers, which greater interoperability (including the CIE) will need to address.

• The proposed consent model for the CIE – enabling people to control how their records are shared at a granular level, dividing them into sensitive information, social care, mental health and the remaining general clinical record - makes sense. NHS England should be asked to adopt this model at a national level.

• Future costs of developing and running the CIE and other enabling components must be spelt out very clearly (capital and revenue), along with an understanding of how they will be funded.

The following concerns were expressed:

• NW London is a very complex health economy, with a plethora of different providers and systems. Linking them together to share care records – and sharing those with patients – is an extremely ambitious IT project, with many risks. It can only be attempted one step at a time, i.e. by adding systems and organisations incrementally.

• The CIE programme cannot publish specific dates for integration until partner organisations and system suppliers respond with their own development capabilities and timescales. Until this is available, the programme will lack credibility.

• It would be highly desirable to have common technical standards for record sharing, to reduce the number of interfaces that need to be built, though such standards are in their infancy in the UK.

• Suppliers such as TPP (SystmOne) and EMIS have historically resisted opening up their systems to share information, because of the impact on their commercial model. Interfaces between these systems and to the CIE are critical to the overall vision of interoperability – but progress is slow, and NWL has little commercial leverage to force them to speed up (GP IT contracts are managed nationally by NHSE).

• The consent model for the CIE is not mirrored in any of the operational clinical and care systems: e.g. GP systems are able to turn sharing on and off, but not at the granular level of the CIE (i.e. they can share all of the patient’s general clinical record or none of it); GPs can restrict specific items, but this is time consuming; acute systems do not currently record consent at all. Consent models may converge over the long term, especially if there is leadership from NHS England, but until then it will be confusing for patients.

• GPs are concerned about the impact on their already heavy workload of explaining sharing to patients so they can give informed consent.

• Currently GP systems do not have the ability to share patients’ consent preference with other systems such as the CIE. Until interfaces are developed, changes in consent will have to be propagated manually – the CIE will need to be resourced

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accordingly.

These issues have been shared with relevant teams, and updates will be given to future meetings.

CCG responsibilities and actions during 2015/16

1. CCGs and providers are requested to work during 2015-16 to assess their digital maturity, develop road maps, and ensure that providers will commit to the required funding and resources to implement interoperability, including integration with the CIE as required, during 2015-16 and 2016-17.

2. Support the further development of the CIE proposals into a business plan by the end of 2015-16, defining costs and benefits in more detail, proposing a funding model for the CIE, and including plans for its on-going operation.

3. Participate in a NW London Shared Care Records Steering Group to oversee the interoperability programme including the CIE, with executive representation from CCGs, healthcare and social care providers, and also involving patient representatives.

Quality & Safety/ Patient Engagement/ Impact on patient services:

The investments in clinical systems outlined in the paper will over the medium to long term have significant benefits in the following areas:

• Quality of clinical decision making across all care contexts • Efficiency of the documentation processes underlying clinical care • Integration of clinical information in support of the greater integration of patient care.

Stakeholders, in addition to patients, include care professionals from all care settings. The planned approach has been developed over several months of analysis, including consultation with all stakeholder groups, in particular patients.

Finance, resources and QIPP Current interoperability projects are already funded; if the CIE project is successful, its ongoing operation will require funding from 2017-18. An analysis of the options, detailed proposals, associated costs and potential funding approaches for CIE will be developed during the remainder of FY 2015-16 for review by Governing Bodies at the end of the FY.

Equality / Human Rights / Privacy impact analysis

The Information Governance to support the Care Information Exchange is being developed by the NW London Whole Systems Governance Group, made up of IG Managers, Clinical IT Leads and Caldicott Guardians from CCGs, providers and local authorities, together with patient representatives. A Privacy Impact Assessment in support of the Whole Systems Integrated Care Information Sharing Agreement has recently been reviewed by the group.

Lay member representation is included in the NW London IT Design Authority and CIE Project Steering Group, to ensure patient input; numerous consultations have been held with

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patient groups concerning the confidentiality of patient information, patient consent for information sharing and the associated communication programme. For the Hillingdon early adopter project, Healthwatch and other patient representatives are involved in the Clinical Reference Group and Project Steering Group.

Main Risks Mitigating actions

1. The information sharing agreements (ISAs) to support shared patient records in NWL have not yet been agreed with all providers and GP practices.

2. Patients may opt out of record sharing because they are concerned about confidentiality. GPs are concerned about the extra workload of explaining sharing so patients can give informed consent.

3. Patient information is held in a host of different clinical and care systems, most of which do not currently have interfaces through which records can be shared. In particular, SystmOne and EMIS have not yet delivered such interfaces. Without automated interfaces, records will have to be shared manually and are unlikely to be updated in real time.

4. Until all clinical systems are linked, the shared care record will not include information from all care settings.

5. Unless the CIE is accessible seamlessly from within care professionals’ existing systems, it will not be used fully.

6. Exploiting shared care records requires organisation change, new protocols and training within end user organisations.

7. The benefits of shared care records are difficult to quantify and may take many years to realise, through changed attitudes and practices on the part of care professionals and patients.

1. NWL Whole Systems Governance Group must drive through the IG framework. A short term ISA has been developed for the Hillingdon early adopter.

2. Initial patient feedback suggests that if sharing for direct care is explained properly, few patients will opt out. The programme must communicate this clearly; and provide support to GPs.

3. Providers need to procure development of interfaces by their clinical IT suppliers. Pressure is being put on GP IT system suppliers via NHS England’s GP Systems of Choice (GPSoC) contract but progress is very slow. Early adopters will rely on manual extracts until interfaces are available – this will still be an improvement on sharing via paper.

4. The CIE will make clear to professionals which data items are not yet available from providers.

5. IT suppliers have been asked to enable access from within their systems; but for GP systems, progress is very slow.

6. The programme will work with CCGs and providers to ensure they understand the changes and investment required.

7. The CIE project will measure benefits in the early adopters and provide lessons for later deployments, to try to speed up realisation of benefits.

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Supporting documents

NWL Clinical Systems Interoperability - ICHP Partnership Board - v 2 0 - July 2015

Care Information Exchange FAQs – CIE Programme

Governance and reporting (Committees, groups, other bodies in your CCG or other CCGs that have discussed the paper)

ICHP Partnership Board 12 June Endorsed recommendations

NW London CCGs

Collaboration Board 25 June Paper to go to individual CCGs via GB Seminars

CCG Committee name Date Outcome

Brent IT Sub Committee 30 June Noted

GB Seminar 5 August Noted

Harrow IT Sub Committee 15 July Noted

GB Seminar 15 Sep Scheduled for 15 September

Hillingdon Pan Hillingdon IT Group 28 July Noted

GB Seminar 20 May Discussed before paper written

Management Committee 22 July Noted

Governing Body 4 August Early Adopter approved

Cent London Transformation Redesign Group

8 July Noted

GB Seminar 12 August Noted

West London GB Seminar 21 July Noted

H&F IT Sub Committee 24 June Noted

GB Seminar 4 August Noted

Hounslow GB Seminar 11 August Noted

Ealing None August GB Seminar postponed

To be re-scheduled

NHS North West London Clinical Systems Interoperability: A Shared Care Record for NW London

This document sets out a vision and Case for Change for the development of a Shared Care Record between the organisations that deliver care in NW London and the citizens who receive that care. It explains the strategic context for organisations’ local IT transformation projects and requests their support for a wider pan-NW London programme. (Note that “patient” is used to denote a citizen who is a user of healthcare or social care; “care professional” includes clinicians from all professions, and those who manage and deliver social care and related supporting care services). The vision can be summarised in three objectives:

• “Joined up patient record”: a longitudinal record that contains the patient’s care history, which may be physically spread over numerous systems, but can be made available as a whole – via interoperability – to a care professional that needs the information to deliver care.

• “My care – my record”: making patients’ records available to them so they can better understand and manage their own health and well-being; and can give informed consent as to who should be able to view information about them.

• “Paperless by 2018”: quicker and more efficient communication between organisations, replacing paper (slow and costly) and faxes (quick and easy to send, but may be lost or go astray).

Imperative for Shared Care Records Health and Social Care organisations now recognise that integrated care, achieved through co-operation between different professions and organisations, is the key to keeping patients out of hospital for as long as possible and improving outcomes once they are discharged. The current fragmentation of care records across multiple organisations and systems means that care professionals may not be aware of, or be prevented from viewing, critical information that already exists. It is difficult to deliver integrated care through a whole-systems approach, or to transform care to improve integration, without a full picture of the person being cared for. For the patient, the inability to locate their records and contribute their own information is also a significant impediment to them taking on a greater role in the co-ordination of their own care.

The need was highlighted by NHS England in its Five Year Forward View, National Information Board Strategy and National Information Board Report: Personalised Health and Care 2020; by the London Health Commission in Better Health for London; and by Monitor in its NHS Provider Licence. Numerous care communities around the country (Hampshire, Bristol, Leeds, Liverpool, Cheshire, Islington and others) have already implemented shared care records, and are starting to produce evidence that shared records improve the quality of care. NHS NW London’s own Informatics Strategy in early 2014 identified interoperability as a key enabler for delivering Shaping a Healthier Future; the early pilots of Whole Systems Integrated Care are being hampered by a lack of shared data.

A shared care record will deliver to a care professional, at the point of care, all the information that is relevant to the treatment or care of that patient: his or her condition, previous episodes of care and the next steps in the care plan. The record needs to be accessible quickly and easily from the clinician’s own IT system, without having to sign on to a different system. An essential aspect of the vision is that patients have a right to access their own records, following the key principle that the patient’s wishes about sharing are paramount.

Sharing Care Records through Interoperability The key to sharing records is interoperability – enabling clinical IT systems to exchange information about patients and care activities. For direct care purposes, sharing is only effective if it can be done in real time – care professionals cannot rely on information from other care settings if there is a possibility that it has already been superseded. Interoperability starts with the ability to read the joined-up care record; but also extends to the ability to write as well, for example to request tasks or book appointments. Of course, sharing is always subject to appropriate information governance to ensure confidentiality and safety, and respect the wishes of the patient. There are three ways in which systems can interoperate:

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1. Common system: no one system can currently meet the needs of all care settings, but in some cases different organisations can use the same system. Examples already under way are the NWL Diagnostic Cloud across acute and primary care, and SystmOne in CWHHE to support both primary and community care.

2. Bilateral interfaces: links between specific systems in different organisations. An example is sharing EMIS GP data in Hillingdon with Adastra in urgent care/out of hours services, and with the local acute Trust, via the Medical Interoperability Gateway; but for most systems such interfaces do not yet exist.

3. Care Information Exchange (CIE): where organisations are unable to use the same system and bilateral interfaces are not available, information must be exchanged via a third party system.

As organisations move to share information about patients, it is essential that they also move towards common standards for the coding and identification of different clinical events, to ensure that the information that is shared carries with it a shared understanding between care professionals of the patient’s care.

Benefits of Shared Care Records For patients:

• Improved outcomes because care professionals have better data about their condition and needs. • Better self-management of their own conditions and care through access to their records and care

plans, supported by information and advice about how they can help themselves. • Increased control over their personal health information through a consent model that enables

them to determine which organisations and care professionals should have access to their records. • Reduced delays in receiving the right treatment, and quicker discharge because care professionals

do not have to wait for information to be received from another care setting • Improved transitions of care that should avoid having to give their details and history each time. • Reduced risk of missing appointments by advising them of appointments electronically. • Personal health analytics enabling them to understand their usage of the care system. • Personalisation of communication preferences e.g. email, letter or SMS.

For care professionals and care provider organisations:

• Quality of clinical decisions: taking into account all relevant information, especially in complex cases. • Reduced care costs through: avoiding repeated tests and unnecessary treatment; more effective use

of out-of-hospital care packages, reducing pressure on emergency care; shorter hospital stays through multi-agency discharge planning; more effective medication reconciliation.

• Better integrated care by sharing data for handovers and MDTs; and enabling new models for delivering integrated care, e.g. cross-organisational workflows, sharing telehealth data.

• Quicker communication between care organisations: less wastage of clinician time chasing others. • More efficient communication between care organisations: paper and fax are inefficient and risky. • More efficient workflows: passing clinical tasks to other care professionals and tracking completion. • Improved monitoring of patient movement and disease management. • Access to robust care information to analyse and plan future care.

Most of these benefits cannot yet be quantified, but a key early product of the planned programme will be a health economics evaluation which will inform a full analysis of costs and benefits.

Current NW London Interoperability Programme and Strategic Context Projects are already under way in NW London to deliver interoperability in key areas: electronic clinical correspondence; the ICE Diagnostic Cloud; SystmOne in the CWHHE CCGs, CLCH, CNWL, HRCH and LNWHT. There are also numerous national NHS systems (e.g. Spine, Summary Care Record, Electronic Prescribing 2, GP2GP, Choose & Book/e-Referrals) and London-wide systems (e.g. Co-ordinate My Care - CMC, 111) that span organisations. Direct online communication with patients is being delivered via the GP IT suppliers’ EMIS

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Patient Access and SystmOnline web and mobile applications. Bilateral interfaces are being developed, e.g. between SystmOne Community and EMIS Web to share records with GPs in the BHH CCGs. These projects all help join up patient records across organisations, but they leave gaps in the shared care record, particularly for acute providers which must share information with a multitude of other organisations; hence the need for a further project, to develop a Care Information Exchange – see below.

NW London is one of the national NHS Pioneers for Whole Systems Integrated Care, with pilot projects in each of the eight CCGs to improve the quality of care and outcomes through care professionals and organisations working more closely together. Interoperability is key to integrated working across the care system.

Beyond NW London, NHS England plans to work on common standards for messages between clinical systems; it will be important for the programme to influence and incorporate London-wide and national NHS standards as they emerge; and to learn from interoperability work elsewhere to inform the longer term strategy.

NW London Care Information Exchange (CIE) The Imperial College Healthcare Charity granted the Imperial College Healthcare NHS Trust (ICHT) £3m over a three year period to implement a “Patient and Clinical Portal”. Following a long period of consultation and procurement, ICHT has now contracted with Patients Know Best (PKB) to provide this Portal (CIE), via a managed service for two years from 1st May 2015. The CIE project will build an aggregated care record across all NW London care organisations, through the exchange of electronic messages with their IT systems, with access for patients, carers and care professionals. At the core of the system is a way of storing and managing consent, enabling patients to control which organisations and care professionals are allowed to see their records, with the ability to distinguish clinical care, social care, and mental health data (and to exclude sensitive data such as that pertaining to sexual health); this capability was a key reason for choosing PKB. The contract price covers access for all health and social care professionals and patients in NW London.

Initially the project will focus on approximately six specific service areas where it is believed that shared care records are potentially of greatest use, such as: integrated care spanning health and social care professions; mental health care; long term conditions such as diabetes, cardiac disease and COPD; at least one area of cancer care; and paediatrics. In these pilot areas there will be scope to use the advanced functionality of PKB, such as: patients entering their own data and symptoms; video consultations; messaging; tasking or requesting across systems. The project funding allows for up to 50 more services in total. Services will be selected based on confirmed use cases and the likely benefit of shared care records in improving the integration of care.

Participation in the CIE will require providers to: develop the capability to send and receive the required message types; provide resources to work with the project team on implementation; nominate care professionals who need to have access and manage their accounts; develop a process to inform and sign up patients; and implement appropriate organisational development and training to make use of shared records. Organisations will need to develop their own Business Cases for the associated costs and benefits; the costs and timescales for realising interfaces to the CIE and implementing process changes will vary, depending on their systems and operating models. Some organisations have already invested in integration software that will simplify the exchange of messages. It is very likely that implementation will be phased, potentially driven by the pilots that are selected, and dependent on individual organisations’ capabilities.

Interoperability Roadmaps Commissioners have been tasked by NHS England to develop roadmaps for the introduction of interoperable digital records and services by providers (including specialised and primary care) during 2015-16. The goal of a shared care record will inevitably be achieved in stages: the provider interoperability projects currently under way; the CIE project; and local projects to implement these systems. The cost of local projects will need to be borne by each participating organisation; for some organisations this will be achieved as a by-product of already planned initiatives, for others it may require incremental investment.

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CCGs and their providers are requested to work during 2015-16 to assess their digital maturity, develop their own road maps, and ensure that providers will commit to the required funding and resources to implement interoperability, including integration with the Care Information Exchange, during 2015-16 and 2016-17.

Future of the Care Information Exchange Beyond the initial two year period there is no obligation to continue the contract with PKB; however, it will take several years for the CIE to realise the full benefits expected in quality and efficiency, so assuming initial implementation is successful, from May 2017 alternative sources of funding will be required. Ongoing costs are estimated at £3m per year (PKB managed service £1.1m; Help Desk and end user support £1.2m; Development £0.4m; Management and administration £0.3m). Therefore in addition to committing to the road map set out above, all partner organisations (CCGs and providers) will be asked to commit in principle to support the CIE for the medium term (2 to 5 years), including further investment in the CIE platform and potentially successor systems if they emerge through national or regional initiatives. To be able to make this commitment, partner organisations are asked to support the further development of the CIE proposals into a business plan, to be completed by the end of 2015-16. This work will define the estimated costs and benefits in more detail, propose a funding model for the CIE, and develop costed plans for on-going operation of the CIE for approval by CCGs and providers. It will involve liaising with the interoperability project teams, and with NHSE with respect to pan-London and national initiatives. The cost of this project is estimated at £80,000, to be shared between Imperial Healthcare Partners and NHS NW London.

Within the next few years other options are likely to emerge for interoperability. London-wide initiatives such as CMC may span care information exchanges in different localities, enabling records to be shared for patients whose pathways cross the boundaries of NW London; or even offer an alternative to the NW London CIE. National systems are likely to deliver greater functionality for sharing records more widely. The business plan will consider these developments and include them in its option analysis.

Enabling Projects for Interoperability Work is under way on several complementary work streams required to achieve the vision: communications planning; information governance; patient consultation; studies to analyse the use and benefits of shared care records, to be carried out by the Sowerby Commission; and continuing to liaise and work with regional and national programmes, to ensure that NWL leads the way in setting standards, no expensive redesign is required and NWL learns from best practice elsewhere (Whole System Pioneers, Vanguards, NIB Framework, London CCGs Interoperability programme, etc.)

Programme Governance Each of the identified interoperability projects has its own steering group, reporting into the governance structure of its host organisation (typically a provider Trust); CCGs and other Trusts impacted by the project are represented on these groups. From a CCG perspective, programme work is reported by the NHS NW London Informatics function to the NW London Collaboration Board of eight CCGs. There is also a NW London-wide governing group for Information Governance, covering both Whole Systems Integrated Care and interoperability, involving CCGs and providers. At the pan-London level there is a Shadow Interoperability Steering Group on which NW London is represented.

However, there is currently no governing group that collectively represents all of the relevant organisations in NW London at an executive level. It is therefore proposed that a Shared Care Records Steering Group should be established, representing CCGs, healthcare and social care providers, and patients. This will ensure commitment of all partner organisations to the clinical process changes, organisation development and financial implications of implementing interoperability. Through this Steering Group, partners will be asked to confirm a Statement of Intent, setting out how and when they intend to deliver their interoperability roadmap and achieve the vision set out in this paper; and at the end of 2015-16 to review the business plan, and

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determine the future direction and financial arrangements for the Care Information Exchange, with a view to making recommendations to their own Boards and Governing Bodies accordingly.

Risks and Issues of Interoperability Programme • Technical/contractual: clinical IT suppliers must provide data via Application Programming Interfaces

(APIs); these may not be delivered when needed, or costs may be higher than expected. In particular, the GP IT suppliers (EMIS and TPP) have historically been reluctant to commit to interoperability for competitive reasons, and despite pressure from CCGs, providers and NHSE, this remains a concern.

• Lack of support: stakeholders have been promised these benefits before by programmes that failed to deliver, or may be unconvinced about them. To mitigate this, interoperability must be delivered in small steps, with early wins, learning from mistakes, and publicising successes and evidence.

• Organisational impact: shared care records imply changes in protocols and ways of working, impacting services and processes, and requiring ongoing organisational development, training and administration (e.g. when junior doctors change over).

• Patient adoption: existing online systems (e.g. EMIS Patient Access, SystmOnline) are sparsely used; will patients choose to use a CIE, or prefer to rely on paper? Marketing the CIE to them will be key.

• Benefits case: many initiatives are under way to improve quality of care, patient access and efficiency; it will be difficult to attribute improvements and savings specifically to interoperability.

• Duplication of initiatives: other systems that emerge (e.g. CMC) may impact CIE scope and plans. • Information Governance: sharing records requires data controllers (providers and GP practices) to

balance the duty to share (Health & Social Care (Safety & Quality) Act 2015) with the duty of confidentiality (Data Protection Act). Clinicians differ on how much sharing is proportionate, e.g. PKB assumes the whole patient record is pre-populated – will GPs allow this? Work in this area has been under way for some time.

Call to Action This document has already been presented to the NHS NW London Collaboration Board and the Imperial College Healthcare Partners Partnership Board. The organisations represented at those Boards are asked to commit to the vision set out in this document and to the work required to achieve this vision:

1. CCGs and their providers are requested to work during 2015-16 to assess their digital maturity, develop their own road maps, and ensure that providers will commit to the required funding and resources to implement interoperability, including integration with the Care Information Exchange as required, during 2015-16 and 2016-17.

2. Support the further development of the CIE proposals into a business plan by the end of 2015-16, defining costs and benefits in more detail, proposing a funding model for the CIE, and including plans for its on-going operation.

3. Establish a NW London Shared Care Records Steering Group to oversee the interoperability programme including the CIE, with executive representation from CCGs, healthcare and social care providers, and also involving patient representatives.

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Attachment: Road Map to Interoperability by Organisation Type This attachment sets out an analysis of the current capabilities for sharing care records by each type of care organisation, with a suggested road map for interoperability. Only sharing for direct care purposes is considered; sharing for secondary purposes is outside the scope of this document.

GP and Community Systems 1. CWHHE - SystmOne as Common System: in the five CWHHE CCGs the wholesale adoption of

SystmOne as the GP system is almost complete. Their community healthcare providers - Central London Community Healthcare (CLCH) in the inner three CCGs, LNWHT’s Ealing Integrated Care Organisation (ICO) and Hounslow & Richmond Community Healthcare (HRCH) are also well advanced with their plans to implement SystmOne. This should deliver full interoperability via use of SystmOne as a common system, including sharing of information and exchange of tasks, within the 2015-16 financial year. With respect to mental healthcare, the timescale will be slightly longer: for Central London and West London CCGs, Central and North West London (CNWL) will adopt SystmOne, but does not plan to replace its existing Jade system until May 2016. In the other CCGs - Ealing, Hounslow and Hammersmith & Fulham – mental healthcare is provided by West London Mental Health (WLMHT), which has implemented Servelec RiO as its clinical system; work has been done on defining a bilateral interface with SystmOne GPs, but no commitment has yet been made to scope, budget or timescales; another option is to share records via the Care Information Exchange.

2. BHH – SystmOne needs to interoperate with EMIS Web: in the BHH CCGs there is 100% adoption of EMIS Web as the GP system. There are two community healthcare providers – LNWHT ICO, which is implementing SystmOne in Brent and Harrow, and CNWL, which will implement SystmOne in Hillingdon by September 2015. For mental healthcare in all three CCGs, the provider is CNWL, which will replace Jade with SystmOne in 2016. The ability of these systems and services to interoperate is dependent on a bilateral interface that TPP (supplier of SystmOne) and EMIS committed in March 2015 to develop; its scope and timescales were expected to be announced in June 2015, but this date has slipped.

3. GP Networks and Federations: shared clinical services are being implemented in support of the objectives of the Prime Minister’s Challenge Fund to improve access to general practice. Both SystmOne and EMIS have developed capabilities to share records between practices within a network, and implementation is under way.

4. Possible short term tactical solutions: the sharing of integrated care and support plans will not be included in the first phase of the bilateral interface between SystmOne and EMIS Web. Whole Systems Integrated Care already has this requirement; so some CCGs are looking at ways to share records in the short term, for example via read-only access to GP records, and/or the CIE.

5. Care Information Exchange – GP and Community systems: the focus of the suppliers is currently on the bilateral interface between SystmOne and EMIS Web. There have been initial discussions between PKB, TPP and EMIS regarding a feed to the CIE; it may be possible to use existing data extracts from GP and community systems and/or the APIs being developed for the bilateral interface, but no firm plans have yet been developed setting out the scope, approach, costs and timescales. In the other direction, most of the Community Trusts have integration software which could deliver the required information from SystmOne to the CIE. It is believed that PKB has an existing interface to RiO (which might offer a route to interoperability between WLMHT and SystmOne GPs) but again no firm plans have yet been discussed. None of the existing or currently planned APIs supports the sharing of consent details, so each supplier will need to create this capability; discussions are under way with HSCIC to build this into future requirements for the GP Systems of Choice (GPSoC) contract, but this will take some time. It is therefore likely that a short term solution will need to be found for the synchronisation of patient consent between systems.

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Social Care Systems 1. Social Care Systems: Hillingdon and Hounslow use LiquidLogic’s Protocol system for Adult Social Care;

the other six NW London boroughs use Corelogic’s Framework-i system. In some boroughs a different system is used for Children’s Social Care, but most use the same supplier as for Adults.

2. NHS Number matching: a common code to identify a person across health and social care is a prerequisite for sharing care records. All eight NW London boroughs have embarked on projects to populate their records with NHS numbers using batch matching, with varying success to date: from 60% to 94% of adults matched (smaller numbers for children). All boroughs intend to move on to online links to the NHS Spine, though some have not yet implemented the IG Toolkit or N3 connection that would be required; most plan to implement online matching during 2015-16, which should enable them to reach the required proportion of NHS numbers by the end of the FY.

3. Electronic Referrals: of the LiquidLogic users, Hillingdon will implement the HSCIC London ITK Adapter to receive referrals under s2 and s5 of the Community Care (Delayed Discharges) Act 2003 in electronic form from The Hillingdon Hospital early in 2015-16; Hounslow do not have current plans to do this, as referrals are less of an issue. Most of the CoreLogic users will wait until they have upgraded Framework-I to the latest version (Mosaic) before they consider electronic referrals, which most of them should achieve during 2015-16.

4. Child Protection Information System (CPIS): all boroughs are considering how to implement electronic interfaces to CPIS, with some very near to doing so (the first priorities are social care and unscheduled care, e.g. A&E in acute Trusts).

5. Interoperability with healthcare systems apart from the above: a. Bilateral Interfaces: both vendors will support the HSCIC Adapter which delivers some

document sharing between health and social care, but there are as yet no firm proposals for APIs for message-based, real-time bilateral record sharing with clinical systems.

b. Care Information Exchange – Social Care systems: there have been no discussions to date between PKB and social care IT suppliers, and no APIs are believed to yet exist that could provide data in real time if that is required, or to share and manage consent. Further work is required on the potential scope, cost and timescales for such interfaces. Given this uncertainty and the requirement for NHS Number matching, it is unlikely that interoperability will be implemented before 2016-17 at the earliest; it would therefore be worthwhile looking at potential short term, tactical solutions for sharing care and support plans based on document exchange.

Acute Systems 1. Electronic Patient Record (EPR) systems: historically acute Trusts kept most of their detailed patient

records on paper, summarising activity in Patient Administration Systems. Trusts are gradually migrating towards paperless operations by implementing EPR systems and then building them out across different acute specialties. Even after the completion of these roll outs, there will be specialist clinical areas with their own individual systems holding information about treatment by that specialty, some or all of which might be relevant to a shared care record. Most Trusts have therefore implemented, or are procuring, additional software (“integration engines”) to manage extracts from such systems and share them with other clinicians; these products can also be used to share data from these systems and EPRs with professionals in other organisations via the CIE.

2. Use of SystmOne as Common System in Acute setting: some of the Trusts located in CWHHE (Chelsea & Westminster, Imperial Healthcare and West Middlesex University Hospital) are implementing SystmOne in emergency or ambulatory care settings in order to be able to exchange patient information with local GP and community clinicians, though they typically continue to use their existing hospital information systems for patient administration.

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3. London North West Healthcare (LNWHT): LNWHT, which operates Ealing, Northwick Park and Central Middlesex Hospitals, has embarked on a project to procure a new EPR across the Trust, and is incorporating the requirement for interoperability (including with the CIE) in this procurement.

4. Imperial Healthcare: is in the process of rolling out the Cerner EPR to its clinical specialties and expects to be able to share information via its integration engine with the CIE during 2015-16.

5. Chelsea & Westminster and West Middlesex University Hospital (WMUH): these two Trusts are in the process of merging and will be procuring and implementing a common EPR. However, they already have interoperability capabilities via an integration engine (including an existing interface to PKB in one specialty) and therefore expect to be able to start integrating with the CIE in 2015-16.

6. The Hillingdon Hospital (THH): THH is developing an EPR by integration of its “best of breed” systems and expects to plan for integration with the CIE during 2015-16. THH has already implemented the MIG viewer and is able to view local GP records in several specialties.

7. Royal Brompton and Harefield (RBH): RBH is headquartered in NW London, is a member of the Imperial College health science network and Imperial College Healthcare Partners, and receives 60,000 referrals from NW London p.a. (almost half of those from Hillingdon), but is commissioned directly by NHS England. RBH is keen to participate in the CIE; it does not currently have integration capabilities, but is planning to procure a new EPR during 2015-16 and will include interoperability as one of its requirements.

8. Royal Marsden (RM): RM is also headquartered in NW London but commissioned by NHS England. It receives fewer than 15,000 episodes of care per year from NW London, but as a member of the Imperial College health science network and Imperial College Healthcare Partners has agreed to participate in the CIE.

9. University College London Hospitals (UCLH): UCLH is NW London’s largest provider located outside its borders, receiving more than 110,000 patients annually; it is especially important to Brent CCG (almost 20,000 episodes p.a.) and Central London CCG (50,000 p.a.). Work is already under way to implement electronic sharing of discharge letters with GP systems. UCLH is planning to procure a new EPR starting in 2015-16, but is unlikely to prioritise interoperability with NW London.

10. Other Acute Trusts: the other significant providers for NW London are: Royal Free (130,000 patient episodes annually, including Barnet); Moorfields (100,000); Guys & St Thomas’s (50,000); Ashford & St Peter’s (40,000), West Herts (26,000), Royal National Orthopaedic (35,000), BMI (25,000) and InHealth (20,000). Extending interoperability must be prioritised on a volume basis, therefore there will be no focus at this stage on linking these providers to the CIE, though they should be encouraged to send electronic discharge letters to NW London GPs, as required in their NHS contracts. No other provider receives more than 5,000 patients p.a. from NW London.

Other Care Organisations All organisations providing care in NW London will be invited to participate in the NW London CIE. These include private operators of Urgent Care Centres, Out of Hours and London-wide 111 services; emergency services such as London Ambulance Service; and community, voluntary and charity organisations such as hospices and Age UK. In some cases, these providers are considering adopting the same systems as neighbouring GPs or community providers in order to be able to share records; others will be able to use the CIE directly, or will link their systems to the CIE. These organisations will be approached early in 2015-16: London-wide services will be approached directly by the CIE project team; local providers will be engaged via individual CCGs.

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The North West London Care information exchange programme - FAQs

1. What is the Care information exchange? The Care information exchange is a technology programme to help enable the development of citizen-led, integrated health and social care in North West London by:

giving individuals a single view of information about their care held by a range of health and social care providers, often on different technology platforms

allowing individuals to share relevant aspects of that information with health and social care professionals as and when required, and to record and monitor information about their own health and care

providing tools to improve communication between individuals and health and social care professionals, such as secure messaging and video conferencing

2. Why is the Care information exchange needed?

Many people will have had the experience of having to repeat details of their care history to a new doctor, nurse or care worker. As well as a GP, an individual may have contact with a range of other health and social care professionals working in acute, mental health or community NHS trusts or in social care organisations. Each of these organisations will have their own record about the patient, but this information is unlikely to be readily available to other organisations. The Care information exchange will give individuals a view of information about them held by different health and social care organisations and enable them to share it as required to ensure their care is coordinated as effectively as possible.

3. How will the care information exchange work in practice? Individuals will be able to see, add to and share information about their health and care such as test results, referral letters, monitoring data, medication, diagnoses and allergies. If given permission, health and social care professionals will be able to see information from other care providers and know that relevant information that they record will also be seen by colleagues in other organisations. In addition, the Care information exchange will facilitate the development of shared care plans covering all aspects of an individual’s health and social care. Governed by an information sharing agreement, data from a range of different IT systems managed by health and social care providers will be brought together in the Care information exchange system. Individuals who wish to participate will be given secure access and will then control how their data is shared.

4. Which organisations are involved in the Care information exchange programme?

The programme is being led by Imperial College Healthcare NHS Trust and has the potential to involve GPs from eight CCGs, social care organisations, and acute, mental health and community trusts across north-west London. The programme steering group has representatives from the different types of health and social care providers. The technology platform is provided by an organisation called Patients Know Best. At this stage we are in the early stages of discussions with potential partner organisations.

The North West London Care information exchange programme - FAQs

5. What is the timeline? The programme began in 2014 and focused on specification of needs and the procurement of the technology. Practical development is due to start with small-scale early adopter projects later this year, focusing first on the use of the communications tools with small groups of patients who have contact with different health and social care organisations. Work is currently underway to develop safe and effective data sharing between organisations and is intended to lead to early adopter projects later this year to test the creation and use of shared patient-controlled care records for small groups of individuals and two or more organisations. The staging and delivery of the wider rollout will depend very much on learning from the early adopter projects.

6. How is the Care information exchange programme funded? Imperial College Healthcare Charity, the charity of Imperial College Healthcare NHS Trust, is providing £3million of funding over three years for the Care information exchange programme. The charity supports the Trust, through numerous projects such as this, with the aim of giving patients the best possible care. At the end of the three years, the funding will need to come from the health and social care organisations within North West London.

7. How will personal health and social care data be protected? Only organisations that have signed an Information Sharing Agreement will be able to participate in the programme. When patients choose to share their data, it will be used for their direct care. The system sits behind the NHS firewall and data is encrypted so that the only people who can view the data are the patient and those they have granted access to.

8. What happens if individuals don’t want to share their data with some or all organisations involved?

Participating organisations will have a duty to explain the benefits of sharing information for direct care. If individuals then do not wish to share their data, they are in control and can withhold consent to part or all of their record.

9. What about individuals who are not able to make decisions about data sharing or who are not able to use the technology involved?

Individuals who are not able to access the system can still benefit at the point of care by giving their consent to their care provider, and they can also give relatives or carers permission to view their record.

10. What is the purpose of the Care information exchange? The purpose of the Care information exchange is to help enable:

patients to be more informed about and engaged in their care and to better manage their own health

health and social care professionals to provide care for patients in a more integrated way