A busy summer lies ahead for the policy makers and implementation teams in the Department of Health and Connecting for Health (CfH) as the implications of the evaluation of the Summary Care Record are considered.
CfH is under pressure to accept all the recommendations in the report, chief among which are a review of the “overly complex and unworkable” consent model, the adoption of a more balanced approach to the pros and cons of the SCR and the introduction of changes to the way the project is managed.
On this last point, the researchers reported a common finding that PCTs felt ‘pushed’ to a pace they found uncomfortable. A similar criticism was made by GP practices of PCTs and, in turn, the evaluation team said senior CfH executives felt the punishing pace of change was set by government because of the high political profile of the Care Record Service programme.
Dr Gillian Braunold, clinical director of the SCR and HealthSpace and a former GP clinical lead for CfH, says the suggestion that PCTs and practices were pushed too hard “is fair to a certain extent.
However, Dr Braunold argues that in the absence of a central push there may have been little or no progress on the SCR.
She adds: “The SCR is also taking the pressure for the whole of Connecting for Health with people like the National Audit Office asking ‘where’s the product?’. We haven’t set any targets but nevertheless you need to put pressure on suppliers if you have practices keen to take the SCR and the product isn’t ready.”
So far only INPS and iSoft have delivered SCR compliant systems and the evaluation report states: “A major problem was failure of some but not all software contractors to deliver key technologies to agreed schedules.”
The researchers argue that there should be a shift in emphasis away from fixed timescales and talk of the project being “behind schedule” to an acceptance that the SCR is ‘a complex programme’ rather than ‘a complicated project.’
For its part the BMA has consistently urged CfH not to move ahead beyond the early adopter sites until the evaluation report has been published and its recommendations implemented.
Dr Paul Cundy, co-chair of the joint IT committee of the BMA and Royal College of General Practitioners, said the BMA accepted the early adopter sites on the basis that there was an argument that mass mailing would work as a way of achieving consent.
However he adds: “That has been shown to be a failure and there should be no further roll-out at the moment.”
Another criticism of CfH in the report is that there is too much focus within the agency of the potential benefits of the SCR programme but not a similar amount of energy expended on the potentially negative effects.
Vocal campaigners against some aspects of the SCR such as Dr Paul Thornton, a GP in Warwickshire and one of the founder members of the Big Opt Out campaign, have welcomed the report.
He says: “It’s a very well written document which should give substantial thought to all involved. I think it vindicates the concerns which many of us have been expressing for a long time and which have been belittled.”
The report recommends that ‘benefits realisation’ work should be more balanced; for example by considering how the tension between benefits and disbenefits plays out in different situations.
Initially the researchers say they were surprised to discover that CfH had an active Benefits Realisation Team for the SCR but no equivalent team charged with documenting and disseminating its disbenefits or risks.
The report adds: “That is not to say that CfH dismiss the latter entirely, merely that potential ‘benefits’ are pursued, documented and disseminated with great enthusiasm by one department whereas ‘disbenefits’ appear to be the responsibility of an entirely different (and somewhat less proactive) department.”
Another key recommendation in the 138 page evaluation report is that CfH should resist the tendency for ‘scope creep’ and develop a tighter definition of what the SCR is to be used for. The researchers highlight the stance taken by developers of the Emergency Care Summary (ECS) in Scotland who they say limited its use to emergency care and resisted the ideas of enthusiastic end users to extend the scope, at least until the ‘basic’ ECS had become fully operational across Scotland.
It is to Scotland and Wales that researchers looked particularly when highlighting how the existed ‘hybrid’ consent model for the SCR could be improved. The report said the implied consent model needed to be urgently reviewed because it was apparent that patients remained ignorant of the basic issues despite an extensive public information programme.
Instead it recommended that the SCR Programme Board and Advisory Group should look particularly at the ‘consent to view’ model which is used by both Scotland and Wales and means patients must give their explicit consent to view the record at each encounter.
Dr Cundy says the BMA would support a ‘consent to view’ model but only if the SCR was redefined along the lines of the summaries used in Scotland and Wales.
However Dr Thornton argues that although ‘consent to view’ offers an additional safeguard for patients the initial upload would still be carried out on an implied consent basis.
He adds: “For implied consent to be valid it has to be clear that the patient is fully informed and fully aware of the issues. The workload involved in assuming implied consent is in fact probably very little different too the workload involved in explicit consent so we may as well get explicit consent.”
On the question of how much workload the SCR would create the evaluation team had no quick answers. It reported that in Scotland the workload associated with the creation of the ECS was described as “negligible” with 97% of
Scotland’s 1030 GP practices participating and 5.1m records created (for a population of 5.5m).
However, in England the team said workload implications were complex, firstly because there would be more work for early adopters than for those following, secondly because work on the SCR could not be done in isolation from other general practice work and thirdly because of the wider implications of use of new technologies on roles and routines.
The researchers also reported that workload was also determined by the level of uncertainty deliberately or inadvertently created by GPs and practice staff. Those practices that actively encouraged their patients to consider their options very carefully reported far more enquiries and opt outs than those who did not.
The report adds: “This finding begs the question, “to what extent should GPs be generating uncertainty about the SCR amongst their patients?” and perhaps the answer is “to some [or to a large] extent, otherwise informed consent is impossible”. Only once that question is answered can ‘workload’ begin to be quantified.”
Indeed in almost all areas of the SCR the research team has raised many more questions to be answered and left plenty to be debated through the summer months and beyond.
Link
Summary Care Record early adopter programme.
An independent evaluation by University College London
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