The SCR programme is an initiative by the English Department of Health to place a summary of key medical details (medication, allergies, known adverse reactions) of every NHS patient on a central database, accessible by NHS staff via a secure virtual network. It is currently being introduced in a number of Early Adopter sites across England, of which the UCL team studied four. The year-long evaluation covered areas including: usability, usage and functionality of the SCR; impact and benefits of the SCR; patient access to their own SCR; evaluation of the Public Information Programme and evaluation of the consent/dissent model.
The evaluation team conducted extensive fieldwork within the early adopter Primary Care Trusts (PCTs), immersing themselves in the reality of implementation and usage of the SCR on the ground. The views and experiences of GPs, nurses, patients and the public, practice managers and other clinical and administrative staff using the SCR were captured.
In her preface to the report, Professor Greenhalgh, UCL Primary Care & Population Sciences, urges the public, press and politicians not to view the SCR in simple, black-and-white terms, saying: As an innovation, it has both potential benefits and potential disbenefits. Its 'success' will depend to a large extent on how it is used and the extent to which it is trusted. Public debate up to now has tended to be conducted by the minority of individuals with extreme views (positive or negative), and as a result has been somewhat simplistic, polarised and tied to hypothetical situations.
The UCL team describe the introduction of the SCR as an example of "socio-technical change" rather than "plug-in technology". People and processes were found to be at least as important as the technology itself in accounting for the rate and extent of progress to date. In some cases a tight, timetabled pace of change had been counterproductive as people took time to engage with the project. Key issues that must be addressed in socio-technical change include staff selection, retention, motivation and training; work routines (which often need to be revised); and the need to be able to explain clearly and simply to patients what their options are so that they can make informed choices.
Professor Greenhalgh added: "We now need to refocus the debate on how the balance between 'benefits' and 'disbenefits' might play out in reality for different individuals in different circumstances, and how these circumstances may change over time."
Highlights from the evaluation report:
Benefits
The main potential benefit of the SCR is considered to be in emergency and unscheduled care settings, especially for people who are unconscious, confused, unsure of their medical details, or unable to communicate effectively in English. Other benefits may include improved efficiency of care and avoidance of hospital admission, but it is too early for potential benefits to be verified or quantified.
Progress
As of end April 2008, the SCR of 153,188 patients in the first two Early Adopter sites (Bolton and Bury) had been created. A total of 614,052 patients in four Early Adopter sites had been sent a letter informing them of the programme and their choices for opting out of having a SCR.
Staff attitudes and usage
The evaluation found that many NHS staff in Early Adopter sites (which had been selected partly for their keenness to innovate in ICT) were enthusiastic about the SCR and keen to see it up and running, but a significant minority of GPs had chosen not to participate in the programme and others had deferred participation until data quality improvement work was completed. Whilst 80 per cent of patients interviewed were either positive about the idea of having a SCR or "did not mind", others were strongly opposed "on principle".
Staff who had attempted to use the SCR when caring for patients felt that the current version was technically immature (describing it as clunky and complicated), and were looking forward to a more definitive version of the technology. A comparable technology (the Emergency Care Summary) introduced in Scotland two years ago is now working well, and over a million records have been accessed in emergency and out-of-hours care.
Patient attitudes and awareness
Having a SCR is optional (people may opt out if they wish, though fewer than one per cent of people in Early Adopter sites have done so) and technical security is said to be high via a system of password protection and strict access controls. Nevertheless, the evaluation showed that recent stories about data loss by government and NHS organisations had raised concerns amongst both staff and patients that human fallibility could potentially jeopardise the operational security of the system.
Despite an extensive information programme to inform the public in Early Adopter sites about the SCR, many patients interviewed by the UCL team were not aware of the programme at all. This raises important questions about the ethics of an implied consent model for creating the SCR. The evaluation recommended that the developers of the SCR should consider a model in which the patient is asked for 'consent to view' whenever a member of staff wishes to access their record.
Not a single patient interviewed in the evaluation was confident that the SCR would be 100 per cent secure, but they were philosophical about the risks of security breaches. Typically, people said that the potential benefit of a doctor having access to key medical details in an emergency outweighed the small but real risk of data loss due to human or technical error. Even patients whose medical record contained potentially sensitive data such as mental health problems, HIV or drug use were often (though not always) keen to have a SCR and generally trusted NHS staff to treat sensitive data appropriately. However, they and many other NHS patients wanted to be able to control which staff members were allowed to access their record at the point of care. Some doctors, nurses and receptionists, it seems, are trusted to view a person's SCR, whereas others are not, and this is a decision which patients would like to make in real time.
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