UCL primary care experts evaluate government health information system
6 May 2008
Researchers from UCL Primary Care & Population Sciences, led by Professor Trisha Greenhalgh, have delivered a report evaluating the government's Summary Care Record (SCR) programme, which seeks to put NHS patient data from across England on a single database.
The SCR programme aims to put key medical information (such as medications, allergies and known adverse reactions) into a unified system that can be accessed by NHS staff via a secure network. A handful of Primary Care Trusts across England are trialling the system, and the UCL team won a contract from the Department of Health to evaluate the success of four of these trials over the course of a year.
The study focused on the success of the system in terms of aspects such as usability, usage and functionality, impacts and benefits, and patient access to their own details. Immersing themselves in the reality of using and implementing the SCR system, the team recorded the views and experiences of GPs, nurses, patients and the public, practice managers and other clinical and administrative staff.
They found that 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.
A further finding was that many NHS staff in the Early Adopter sites (selected partly for their keenness to innovate in ICT) were enthusiastic about the SCR and keen to see it up and running. However, 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. While 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".
Patients may opt out of the SCR if they wish, but less than one per cent of people in Early Adopter sites have done so. 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 among 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. 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 patients 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 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.
In her preface to the report, Professor Greenhalgh urges the public, press and politicians not to view the SCR in simple, black and white terms: "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."
She adds: "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."
To find out more, and for the full press release, follow the links at the top of this item.
Image: Professor Trisha Greenhalgh (Nuffield Trust)