Sharing patient information electronically throughout the NHS

Time for all clinicians to get involved

The UK government's NHS modernisation process is driven by highly visible promises to improve the standards and equity of heath care in the United Kingdom.1 The government hopes that the systematisation of health care can bring about revolutionary and cost effective changes in the ways we deliver care and has promised new electronic systems to enable us to monitor the quality, effectiveness, and equity of health interventions, in more open, evidence based, and person centred ways. In particular, the NHS in England has £2.3bn ($3.75bn; €3.31bn) to spend between now and 2005 on an integrated care record service. At the heart of this service is a health information spine, where patient summary information will be published for use by all NHS staff involved in the care of individuals.2 Yet few clinicians have played any part in planning the spine. Populating it with appropriate and accurate clinical data will not be straightforward.

So what advantages will the information spine bring? Ready access to all information about medical and surgical history, allergies and sensitivities, current medication, and recent investigations would undoubtedly be a valuable clinical resource, preventing errors,3 eliminating unnecessary investigations, and potentially speeding up the patient journey. But the disadvantages also need considering. These include risks to both patient and clinician if confidential identifiable data fall into the hands of people with no right to see it, and problems resulting from inaccuracy, misinterpretation, and omission of information. In a single general practice or hospital responsibility for identifiable patient data can be defined and managed—and clinicians take these responsibilities seriously. But when information moves beyond one organisation to a wider “shared health space,” who is responsible for its integrity, veracity, attribution, and distribution? Can readers understand the provenance of the information: where was the reportedly abnormal blood test done? Was the result sent to the information service automatically or rekeyed in (erroneously?) by a receptionist? Was a diagnosis the result of a considered named doctor's opinion or a (possibly misreported) diagnosis by hearsay?

Populating the spine with information has two stages. The first is to create a new information resource. The most likely source is the general practice record. But a recent qualitative study of patients in English general practice found that up to 40% of the summary information derived from current computer records was inaccurate.4 The only way patient information can be acceptable in a shared NHS information resource will be if summarised records have attested accuracy, agreed by patient and general practitioner together.5 The second stage is to keep it up to date. To maintain a patient's information the designers have sensibly proposed that events (such as attendance at a surgery or outpatient appointment, a prescription, or an investigation or procedure) should automatically trigger transactions to update the information spine. This will be a major step forward in the effective use of information systems in the NHS, as it will provide clinicians with more information without the penalty of entering information duplicated elsewhere.

Many studies have been done of patients' views about sharing health data, but the findings have been confusing. Some patients already expect the NHS to keep readily available information about medication and diagnosis; but others want to be asked for their consent whenever new health information is to be shared 6; and patients are unhappy to divulge lifestyle information to their general practitioners.7 Designing effective mechanisms for patients to exercise their rights to withhold elements of their health record will be challenging, but trust in the new NHS information service is fundamental to success. Access to shared information should, except in emergencies, be available only to clinicians concerned in the care of that patient.5 Without trust the whole investment will be underused and therefore a failure. A long awaited consultation process on confidentiality by the NHS Information Authority is due to report this summer.8

Despite some early discussions,9 many general practitioners and consultants have not heard of the integrated care record service or the information spine.10 General practitioners have well established electronic records but have not collected data with sharing in mind, whereas in the hospital sector electronic records are rarely useable as the master clinical record.11 The NHS wants this to change. In theory, an appropriate and effective information infrastructure has much to offer, providing information to underpin commissioning, quality control, clinical governance, and performance management as well as being the prime clinical information source for individual patient care. But it needs to be provided in the context of local multidisciplinary teams involved in the care of patients in complex care pathways, tailored to local facilities and resources.12

With a workforce of over 1.3 million, the NHS is one of the world's largest employers. Its national programme for information technology is the largest and most ambitious public sector information technology procurement project to date. The rest of the world watches our progress with interest, as this kind of record sharing technology, although familiar in web based commerce, is novel in a large scale health environment. So far the new team running the national health technology programme has proved pragmatic and effective, and the reality of NHS wide clinical record technology is closer than ever. But involving front line clinicians in the evolution of their workplace information systems is essential. If safeguards to confidentiality and accuracy of patient information prove insufficient, then both patients and the caring professions will not use the spine, and the money will have been wasted.

See also Letters p 162)