The number's up

The way forward for the ongoing work on electronic health records was put under the microscope at a recent BCS Health Informatics Forum (BCSHIF) workshop.

Peter Murray, founding fellow and director, Centre for Health Informatics Research and Development, provides a round-up of discussions.

'I am not a number, I am a free man. I will not be pushed, filed, stamped, indexed, briefed, debriefed or numbered.'

This is one of the most famous quotes from the 1960s TV series 'The Prisoner'. Portmeirion in Wales, where the series was filmed, was an ironic (or iconic) setting for the second of two workshops on health records, given what we in the UK, along with many other countries, seem to be trying to achieve in terms of numbering, indexing, filing, and so on of many elements from our health records.

This article provides my initial reflection on the workshop proceedings and pulls out what I think were some of the interesting issues.

The two recent workshops in Glasgow and at Portmeirion brought together BCSHIF members, clinicians (GPs, hospital doctors and nurses), academics, health records managers, and others. All four home countries were represented at the events, plus wider European participation from Norway and The Netherlands.

The events were held in Wales and Scotland to emphasise that BCS is a UK-wide organisation, and try to avoid the narrow thinking of NHS Connecting for Health's English approach. Discussions started by sharing an understanding of what is meant by electronic health, medical and patient records, ongoing work, and their implications.

The further aims were to identify the major issues to address, for the UK and international interest, and what needed to be done. We also wanted, as Sheila Bullas, one of the workshop leaders emphasised, to get away from a navel-gazing discussion about the past, avoid 'motherhood and apple pie' statements and engage in some critical thinking about the way forward.

A wide range of issues emerged, and there were differing views on the priorities for addressing them. The Glasgow event highlighted many issues specific to Scotland, and the Scottish Executive's different approach. While the Welsh event did not focus as heavily on Welsh issues, it was clear that for many of our Welsh colleagues, the best approach would be very different from that of Connecting for Health.

Many technical issues emerged, as did the need for systems to support interoperability, especially across borders, and long-term access to records in the event of system changes. However, I want to highlight more of the cultural and organisational issues.

Issues of access to records, including who should have access and for what purposes, issues of cultural change and the impact of electronic records on professional practices were discussed, along with the implications of telehealth and other future developments on the nature and use of electronic records.

The participants saw the development of electronic records not only from technical viewpoints, or from their own professional backgrounds, but explored many of the wider implications.

Discussions included the changing role of the patient and their expectations, the implications of demographic change and the possible creation, or reinforcement, of digital exclusion and disadvantage, and the need to move to a real health service, rather than simply a crisis-response illness service.

The integration of paper and electronic records and the necessary migration from legacy systems generated much discussion, especially at the Scottish workshop. Patients currently have multiple paper records held in many different locations by different health professionals, and often for differing purposes.

Is it then adequate to scan paper records into an electronic record and call them electronic? There are many issues around the structure and coding of such input, around how the information is translated into an identifiable format, and future access.

The practical and philosophical issues of a move to integrate all of these into possibly one lifelong electronic record have, it was felt, been vastly underestimated, and the idea of 'one patient, one record' is probably unsustainable.

This seems to have been recognised in the Scottish Executive's 'Delivering for Health' strategy, which seeks to move towards different models of care delivery ('away from reactive, crisis management, acute-orientated care towards anticipatory, preventative and continuous care') and for a comprehensive set of information and communication systems built around the electronic health record. The strategy explicitly states that 'patients will have access to their own electronic health record'.

Moves towards more patient-centredness and greater collaboration, in both healthcare delivery and so, of necessity, health records, were seen as inevitable. As more patients use a wider range of healthcare services, we will need to explore the nature of the 'healthcare team' and who has legitimate access to the record(s).

Should local pharmacists have access, should homoeopathy practitioner? Should they have access to other parts of the record? The rights and obligations of a wide range of stakeholders will need to be explored alongside the role of the patient in determining rights.

Will politicians be brave enough to vest ownership, and control of access to the record primarily with the patient?

Irrespective of how far along this road we go, there was a view that the patient will be central to consent and control perhaps in a 'primus inter pares' (first among equals) role. However, with the variety of records that exist we cannot adopt a 'one size fits all' approach to future health records.

We have legislation on the ownership of the record, but this was felt to be flawed, as might be the whole question of 'ownership'.

Participants were keen to see work undertaken to deconstruct the issue of 'ownership' of records, explore whether it is a useful concept, and whether a better set of discussions might be around who has rights of access to the record and who holds copies of it; even whether 'the record' might be viewed differently, as it is often a composite of different things from different sources.

There were unsurprisingly different views of what 'the record' is: each a version of the truth from a different perspective; each setting the boundary in a different place. Work to address shared understandings will be vital; structure of records is good, context may be even more important.

Records contain data collected at specific times, and in developing any records architecture, thought must be given as to determining what data to collect - and to store long-term - with a view to what might be needed or relevant in the future.

This is particularly relevant when those contributing to the record are not necessarily those who use it, with the result that much that is implicit must be explicitly recorded.

The current digital recording of clinical measurement and images results in an explosion of data which will require additional tools for visualisation. It was felt that there is not sufficient understanding of this issue and that a computer science perspective is required.

There was concern about whether current developments, based on today's or even yesterday's technologies, take sufficient account of technology developments we already know of or can predict.

In the future, will we need large, industrial-modelled electronic records, or should we look towards smaller, decentralised and patient-specific databases?

What are implications when 'you are your own record' through the use of wearable and implantable devices and personal area networks?

Will we need to start again and spend another £12 billion for the NHS to catch up with the technology the rest of the word will be using?

Does the information 'pull' approach epitomised by browsing others' records (or a single centralised one) replace the 'push' approach (represented by encounter messages, referral requests and discharge messages), or is it just an adjunct to it?

We  considered what sort of society we wanted and recalled the warning of information commissioner Richard Thomas that the UK could 'sleepwalk into a surveillance society' as a result of collecting more and more information about people that is accessible to many people and shared across many boundaries; just what should shared health and care records aim to do?

This report provides the merest taster of discussions. So, where do we go from here? An action plan is being developed. BCSHIF can, and will, play a major role. Given the scope of the actions, many other organisations will need to be involved as well.

Much of the work might only be possible through the national organisations responsible for implementing electronic health records, and cannot be undertaken alone by volunteers within a charitable organisation such as the BCS.