Comments on computerisation programme: the hidden international dimension (10 Aug 2005)

From Nhs It Info

By James Wimberley

[Based on a letter sent to the NHS on 10 August 2005]

My main concern of substance regarding the NHS computerization programme is the lack of any clear approach to the international dimension of patient care, for about a million foreigners in the UK at any given moment and a similar number of Britons abroad. These are crude order of magnitude guesses; I suggest that it is important to secure reliable estimates of these movements and their implications for the demand for medical care.

• In the absence of public policy statements, I will simply assume for the purpose of these comments that the goals of the NHS include:

• providing care to non-British residents and visitors, according to their circumstances;

• ensuring so far as practicable continuity of care in other countries for NHS patients.

These goals have considerable implications for the computerisation programme, on issues that - so far as I can judge from the documents published on the NHS website - have simply been ignored in its architecture [1]. I urge that the omission be put right, and a thorough effort be launched to analyse the issues and respond to the needs. There should be a sixth (or ninth) regional cluster: the rest of the world.

While I have little expertise in this special area, my family and I have lived abroad for 32 years, in France and more recently in Spain, so I have a detailed patient's-eye view of at least two foreign healthcare systems. My career as an international civil servant has lain in areas other than health, but it has I think given me an atypical sensitivity to issues of transborder coordination. So I do not apologise for trying to identify some of the issues that NHS has to face.

Non-British patients

This diverse group ranges from long-term residents such as spouses of nationals, to short-term tourist and business visitors, passing through students, legal and illegal migrant workers, refugees, and asylum-seekers. For the delivery of care, I understand that the NHS treats everyone on the basis of need, with minor exceptions to deter health care tourism. For the computerisation programme, I see three main questions.

• Should data recording should be selective or universal? The arguments for selectivity are direct cost and the limited utility of records that will not be referred to again. However, the case for universality is stronger: it is not practicable to make a judgement at the point of contact (A&E unit or GP's surgery) how long a patient is likely to stay in the UK; comprehensive data is needed for unbiased epidemiology and management decisions; and the most transient patient needs lifelong medical care somewhere, so the question of future use is not limited to the NHS. That said, it is not obvious that a spine record should be generated for every single patient. But the high mobility of many of these groups suggests that a minimal trace should exist nationally.

• How can NHS staff gain access to computerised records held abroad? The question only applies to patients whose previous health care was provided by an advanced country with its own computerised health record programme. The number of such people and countries is not small and will increase. It follows that the NHS should develop capabilities to receive computerised data from selected countries, starting with those also moving ahead in the area, say Australia, Canada and France.

This access has a technical and a professional component. The technical side covers data formats, transmission methods, and security. Since a single international standard for these is unlikely, the NHS has to be prepared to deal with a variety of standards. The capabilities for dealing with these and resolving difficulties in real time are not trivial. This suggests a degree of centralisation of expertise, perhaps in 24-hour regional centres.

The more challenging professional aspect involves developing trust across borders. I will treat this below as an issue involving both import and export of data.

• What are the associated costs and benefits? The direct costs are likely to be significant absolutely, though not large in the context of the very large overall programme. However, there are benefits and cost savings through:

• timely and accurate diagnosis;
• avoiding duplication of scans and tests;
• public health;
• facilitating the efficient international outsourcing of tests and treatment;
• international cooperation in medical research;
• telemedicine.

It is obviously desirable to investigate these aspects further.

NHS patients abroad

The group of NHS patients going abroad is similarly diverse, and also ranges from holidaymakers and business people on short and predictable stays to permanent migrants. The mirror image breaks down for the intermediate group: the students and migrant workers reappear, but not the asylum-seekers. There is also an asymmetrically large cohort of retirees, concentrated in France and Spain, who typically retain strong family ties to the UK, spend part of every year there, and may intend to return permanently before the end of their lives. Similarly, the issues can be grouped under three main questions.

Whose patient data should be considered for export?

Again I see no reason for a priori administrative selectivity: all records should be potentially available, subject to medical considerations of trust and consent, and practical limitations of cost and technology. Note that I use the inclusive term "NHS patient" rather than "Briton" in order to capture those treated in the UK during however short a stay, tourists, students, failed asylum-seekers, and all. In fact the proposed duty to support continuity of care applies just as strongly to these short-residence patients as to those who have lived in the UK for their working lives. It is similarly impracticable to predict reliably where every such patient will live in future years.

How can patient records be exported?

The technical difficulty of exporting data looks small at first sight. The NHS records system will cover a very large population and it is reasonable to expect medical practitioners abroad to accept and convert its data formats. It will be necessary to prepare user guides for selected countries. The underlying communications will presumably use the general common-carrier infrastructure of telcos and the Internet, rather than the physically isolated lines of the military. In this model, security depends on encryption and access control by end users, and boils down to trust in these (see below). Special arrangements may have to be made for very large data files such as those generated by scans.

The necessary technical coordination depends on the choices made by partner countries on their side. If a country like France or Sweden opted for a centralised focal point for data exchange, as I suggest above for the NHS, the liaison with counterparts is straightforward. But a flexible approach will be necessary for more decentralised countries like the USA, Germany and Spain. For example, it might be necessary to work directly with the three main emergency hospitals on the Costa del Sol (Marbella, Málaga, and Vélez Málaga), providing them with dedicated terminals and training of key staff.

Who should have access to NHS records abroad?

The duty of supporting continuity of care through transfer of records has to be implemented with pragmatism and prudence. The priority countries demographically are fortunately also technically and professionally advanced ones, and more or less select themselves: France, Spain, USA, Australia, Canada, Netherlands and so on. Again, within these countries the population of ex-NHS patients (apart from the returning short-stay visitors) is highly concentrated - capital cities, coastal resorts, a few inland regions like the Dordogne. The number of health-care professionals who will want access to NHS records, and be ready to train in the use of its system, will be self-limiting. That does not mean that the NHS should simply be passive and await requests. For the interchange of data to work, the NHS will have to be proactive, consulting doctors and hospitals in target areas and developing packages of information and training.

What are the costs and benefits?

These parallel those of the import of data. The benefits to patients are the same; those to the providers mainly accrue to the foreign healthcare systems, but not entirely: the NHS saves when returning former patients have enjoyed better, and better documented, care during their stay abroad. The costs similarly are mainly borne by the foreign providers, except for those of specific training and the trust management system - see next section.

Trust

The more important question for access by foreign healthcare professionals - in fact the key issue for the whole approach I recommend - is trust. It is not practical to extend to the rest of the world the NHS model of a uniform space of high trust. Instead, data export should be able to handle different levels of trust. By the nature of a computerised system, this has to go beyond the existing informal networks of trust between professionals, which are too restrictive, élitist and slow. In addition, the creation of trust has to include computer security as well as traditional medical ethics.

The trust problem goes two ways. The managers of medical records in say France will need, before sending them to an NHS hospital, to satisfy themselves about the standards by which these records will be handled in the UK. Foreign record-holders are not bound either a priori by the idea that the NHS is a flat trust space, and data may be provided to named persons; the internal NHS system already provides for restricted access to say psychiatric data, so this additional category should not be difficult to incorporate.

The model I suggest - drawing on part of part of my own professional experience in higher education policy - would make a virtue of this two-way street by relying on mutual accreditation. An accreditation system can accommodate different levels of trust, reflecting the different standards of skill and training in different places. For example, pursuing my Costa del Sol example, one could imagine the A&E departments of the four hospitals being accredited (after a review and training) to receive some or all NHS data automatically, while GPs could access the data only with a written authorisation from the patient, and possibly not directly.

Note:

[1] Searches of the consultation document dated 29 July 2005 entitled "The Clinical Development of the NHS Care Records Service" using the keywords international, abroad, foreign, non-British gave zero results.