News
Evaluation of first year of Summary Care Record
8 May 2008
A University College London (UCL) research team has published its
independent evaluation of the first year of the Summary Care Record
(SCR) programme [1].
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.
The evaluation was commissioned by NHS Connecting for Health (CFH) to
inform the development of the programme.
The UCL team, led by London GP Professor Trisha Greenhalgh, found
that although the SCR offers real benefits for treating patients in
emergency and unscheduled care settings, the "complicated" technical
system needs to be refined before being rolled out. Nevertheless, both
NHS staff and patients were largely positive or amenable to the
programme, with most people valuing the benefits of instant access to
medical records over the small risk of data loss or breach.
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.”
NHS Connecting for Health response
NHS CFH said that it will be considering and discussing the findings
with key stakeholders. The Summary Care Record Advisory Group will be
asked to consider urgently the report’s findings and to advise on how
the findings will inform the future roll out of the Summary Care Record.
The Summary Care Record early adopter programme will continue in its
present form whilst the Summary Care Record Advisory Group considers the
report’s findings before further roll out commences.
Dr David Colin-Thomé, Chair of the Summary Care Record Advisory
Group, said: "I welcome the publication of the report of the evaluation
of the Summary Care Record Early Adopter Programme by University College
London. It is important to maintain momentum on the Summary Care Record
and to assimilate the learning as quickly as possible, with the help and
advice of the Summary Care Record >Advisory Group".
Dr Gillian Braunold, Clinical Director of the Summary Care Record and
HealthSpace Programme, said: "We set up the early adopter programme to
ensure that problems, issues and practicalities of implementation were
tested out in real life health care situations in a controlled and safe
environment.
The report offers the programme the foundations on which to base the
necessary planning for improvement in design and implementation before
national roll out. This will enable the ambition of enabling safer
better care for patients in emergency and unscheduled care across
England as quickly as possible."
Report highlights
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% 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% 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.
Reference
1. Greenhalgh T, Stramer K, Bratan T, Byrne E, Russell J, Mohammad Y,
Wood G, Hinder S. Summary Care Record Early Adopter programme: An
independent evaluation by University College London. London: University
College London; 2008.
www.ucl.ac.uk/openlearning/documents/scrie2008.pdf
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