Patient Record Projects

2.3.2.1 Connecting for Health

Officially, NHS Connecting for Health is an organisation established as part of the Department of Health Informatics Directorate, whose “role is to maintain and develop the NHS national IT infrastructure” [4], but the name ‘Connecting for Health’ (CfH) is also widely used to refer to the ‘lifelong patient record’ project which was overseen by the organisation⁵. The CfH project was undertaken as part of the NPfIT. Although Information for Health proposes the creation of a lifelong patient record, it does not specify the details of how such a record should work or exactly what information it should contain [22]. In a written response to the House of Commons in 2004, however, Mr. Hutton talked about “providing doctors and nurses with the right information in the right place at the right time” [44]. By 2006, the project had been further defined

“The care records service will create electronic patient health records by com-bining central data about patients, including their identifying characteristics (the personal demographics service), administrative records, and important health alerts such as allergies, with summaries of care episodes drawn from local institution-based electronic patient records...” [45].

This was to be achieved by connecting all healthcare systems to a central record system, known as the ‘records service spine’ [45]. As of 2008, the project consisted of several distinct com-ponents, including the Summary Care Record (SCR), the Secondary Usage Service (SUS), and the Detailed Care Record (DCR) [46]. But, by this time, the project was encountering heavy opposition. Concerns centred around confidentiality and use of resources [47]. Many health pro-fessionals within the NHS felt that CfH did not constitute a good usage of NHS resources [48].

In addition to the costs associated with development, adoption of the new system, which heavily emphasised standardisation across systems, would require migration of existing patient health data onto new, “spine compliant” systems. Migration of data is resource intensive at the best of times, and in the case of the NHS is particularly difficult because information held in legacy systems may not map directly to the format of the new system [45]. In addition, there is the issue of waste with regard to legacy systems once the data has been moved to the new system.

5For convenience, CfH will be used to refer to the lifelong patient record project, rather than the organisation, for the remainder of this thesis.

16 2.3 Moving Towards the Patient-centric Approach

Legacy systems represent a significant investment of NHS resources. Abandonment of them while they are still potentially useful can be considered a waste of resources. Similarly, intro-ducing a new system, running the new system and the legacy system side-by-side, then phasing the legacy system out over time can be seen as wasteful since the two systems must be run in parallel until the legacy system is fully phased out.

In addition to the resource issues, healthcare professionals, the public, and activist groups raised serious concerns about the security and confidentiality of patient data in such a system. Gathe-ring data on a few centralised servers was seen as decreasing physical security, while allowing universal access throughout the NHS was seen as opening the door for improper use of or ac-cess to patient records by NHS staff. Storing records on third party servers also caused concerns among healthcare professionals that they would lose control of the data [46] as well as raising questions about information availability [49]. Of even greater concern were proposals to extend access to patient records beyond the NHS [50].

In September 2010, the Department of Health published a press release which essentially ended the lifelong patient record as embodied by the CfH patient record project, stating that “a review of the National Programme for IT has concluded that a centralised, national approach is no longer required, and that a more locally-led plural system of procurement should operate” [51].

However, for the majority of this research, the CfH patient record was a central project within the NHS and, as a result, heavily influenced this research. To reflect this, CfH is included in discussions of current or ongoing projects throughout this thesis.

Although the grand scale of the centralised, national, lifelong patient record project has been greatly reduced, it is worth noting that, at the time of writing, NHS Connecting for Health continues to exist as an organisation and is still moving forward with various aspects of the NPfIT, including a summary care record and ‘Choose and Book’, an electronic appointment booking service [4].

2.3.2.2 Welsh Clinical Portal

The Welsh Clinical Portal (WCP) is part of the national applications strategy for the NHS in Wales [16] and is intended to provide an all Wales interface to an integrated, shared Electronic Patient Record System (EPR). The Portal itself is the clinician access point to a Single Integrated Health Record [52] meaning that, although the Single Integrated Health Record will actually incorporate a variety of systems, from the end users’ perspective the WCP will be synonymous with the single care record. This also means that, although the WCP and CfH both aim to provide an integrated patient record which can be accessed across multiple sites, they have taken very different approaches. Whereas CfH mainly adopted a silo approach, the WCP is

2.3 Moving Towards the Patient-centric Approach 17

taking a federated approach, and will incorporate existing systems and services as well as newly developed ones [52]. At the time of writing, the WCP is intended to be rolled out in five stages:

• “Version 1 allows you to request tests.

• Version 2 will provide electronic clinical communications.

• Version 3 will support recording of detailed clinical assessments.

• Version 4 will allow [the user] to prescribe and manage medicines.

• Version 5 will support integrated care planning and clinical pathways” [53]

Currently, multiple pilot projects, each encompassing different aspects of the portal are in pro-gress. As elements of Version 1, these pilots focus primarily on test requesting and reporting in different diagnosis areas [5].

2.3.2.3 CANISC

Originally developed in Velindre NHS Cancer Centre⁶, CAncer Network Information System Cymru (CANISC) began as a shared patient record for cancer care providers. Since its original implementation, CANISC has been expanded to include a range of services both within cancer care and in other areas. At its heart, CANISC is primarily a shared patient record, incorporating data from, for example, cancer centres, Cancer Genetics, palliative care, clinical trials (Welsh Clinical Trials Network), movement disorders, and colposcopy [55, 56, 57]. In addition, a series of cancer minimum datasets have been developed as part of the CANISC project. CANISC has been accepted as the all Wales cancer system and it is planned that CANISC will eventually be incorporated into the WCP [55, 58].

It should be noted that this research has been undertaken in collaboration with Velindre NHS Trust. Throughout the project, the author has met with an advisory team from the Clinical In-formation Unit at Velindre, who have provided advice and support regarding the needs of clini-cians, general information about the NHS including working practices, political developments, and their own experiences developing and maintaining CANISC [57]. This team consisted of Dr. Dave Morrey, Head of Clinical Information at Velindre, Hazel Bailey, NWIS Senior Infor-mation Analyst, and Tony Bater, Head of CANISC Software Development. On occasion, other members of Velindre staff participated in meetings and interviews to provide additional perspec-tives on working practices and requirements. Such meetings are cited individually throughout the thesis, as appropriate.

6Under the name ISCO (Information System for Clinical Oncology) [54]

18 2.3 Moving Towards the Patient-centric Approach

In addition to the general help and advice of team members, CANISC has also heavily influen-ced this work. CANISC has been used as one starting point for discussions regarding future system requirements and is included as part of the integrated EPR in the prototype. The col-laborators and clinicians interviewed as part of the evaluation currently use CANISC as their patient record system.

2.3.2.4 Scottish Emergency Care Summary

Rolled out in 2006, the Scottish Emergency Care Summary (ECS) contains basic patient health information for NHS staff providing out of hours patient care. As its name implies, the Care Summary is not a complete shared patient record. Rather, it contains only the most vital in-formation for emergency care - patient identification, prescriptions, adverse reactions, and the patient’s GP surgery [8].

Although the ECS is not an integrated lifelong patient record, it is a form of shared patient record and demonstrates that at least some of the challenges associated with developing and implementing integrated patient records can be achieved. The ECS draws patient information from multiple systems and provides that information at the point of care at the time when it is required. The ECS has also overcome other challenges, such as patient adoption through informed consent. Whereas CfH faced significant opposition because it was perceived as putting patients’ sensitive information at risk, the limited scope of the ECS, both in terms of the quantity of data as well as access rights to that data, meant that it has met with far less resistance. In contrast to the heavy opposition and ultimate failure of CfH, the apparent success of the ECS [59] suggests that an integrated EPR is technically possible, but also that it will be accepted by the public as well as members of the healthcare community if it is perceived to be both ethically sound and clinically beneficial.