Informaticopia

Thursday, June 05, 2008

Consent, opt out and the summary care record

Dr Paul Thornton has made public his advisory letter about the rollout of summary care records (SCR) in Dorset and the consent model being employed.

He cites the UCL report on the SCR early adopter program and guidance from the Medical Defence Union to advise the Dorset Local Medical Committee that implied consent (“opt out”) is unlikely to be valid.

It will be interesting to see what decisions GPs make in the next phase of rollout areas following the learning from the early adopter sites.

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Tuesday, May 06, 2008

Report of Evaluation of Summary Care Record Early Adopter Programme

An interesting report has been published today into the evaluation of the Summary Care Record (SCR) Early Adopter Programme. It highlights many of the difficulties which have been encountered and makes recommendations to improve for the future.

The evaluation team led by Trisha Greenhalgh at University College London discusses criticisms of the programme focusing on "implementing a technology rather than a broader and more developmental focus on socio-technical change". They also make comment about the ethical and moral considerations inherent in the "current ‘hybrid’ consent model for the SCR, which is widely seen as overly complex and unworkable (and which many GPs and Caldicott Guardians see as unethical), and consider alternative models, notably ‘consent to view’, that have been shown to be acceptable and successful in comparable programmes" in Scotland and Wales. This was despite the fact that few of the patients in the pilot area reported strong feelings about whether they had a SCR and low levels of "opt out".

The report also criticises an "outdated model of change – centrally driven, project oriented, rationalistic, with a focus on documentation and reporting, and oriented to predefined, inflexible goals", and argues for "more contemporary models of change (which are programme-oriented and built around theories of sensemaking, co-evolution and knowledge creation) include soft systems methodology, technology use mediation and situated action".

The full (138 page) report is available from http://www.ucl.ac.uk/media/library/screvaluation, and although I've only read the executive summary so far I think it should be compulsory reading for anyone involved in electronic health records.

Further commentary and discussion is taking place on the E-Health Insider site under Urgent review of SCR consent model recommended and elsewhere. It will be interesting to see if the lessons learned will be put into practice.

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Saturday, April 21, 2007

Shared Care Record workshop


Yesterday I attended an "Open Workshop" organised by the NHS Faculty of Health Informatics.

The workshop was led by Dr Gillian Braunold (Connecting for Health, National Clinical Lead for GPs) and provided an opportunity to explore a range of issues surrounding the Summary Care Record which is currently being piloted by Connecting for Health. This will provide an outline record for every NHS patient, initially based on a summary by their GP.

The event was held at Armada House in Bristol which provided easy access for me and was one of the first organised by the Faculty in the south of England.

The day was opened and chaired by Dr Paul Woolman who introduced the day by outlining the case for the SCR by citing references ranging from the US Institute of Medicine Preventing Medication Errors to the New Statesman supplement on IT and Modernisation (Oct 2006).

Gillian outlined her background and asked delegates to describe their role and what they wanted to get out of the workshop. She then described some of the lessons and issues from the early adopter sites (such as that in Bolton which was announced in March). She discussed some of the issues around opaqueness, delays and politics and compared the approach in England with that in Hampshire, The Wirral and Scotland who are "getting on with it". She also raised issues, which ran throughout the day, about consent, opt-in and opt-out models and sealed envelopes, which have been discussed on this blog and elsewhere (eg SCR opt-out sets 'onerous' conditions, says GP EHI).

Of the £12.4 billion budget for the National Programme for IT only a small percentage is being spend on the SCR, but Gillian described it as being one of the keys to making all of the work on sharing records come true.

The rationale for the inclusion of medications and allergies in the first uploads of records was described, and linked to work on security and confidentiality including Role Based Access Controls (RBAC), workgroups, "legitimate relationships" audits & alerts, and aspects of physical security including smartcards.

Issues about data quality within records were briefly touched on along with developments for patient access via HealthSpace, including e-gif level 3 security which is promised for May 2007.

After lunch David Nash gave a demonstration of the Clinical Spine Application (now renamed Summary Care Record) showing the view that a doctor in A&E may get to the data which has been uploaded from a GPs record. This raised lots of discussion about RBAC, overriding dissent etc. Demonstrators (both online and stand alone) of this functionality are being built.

Dr Chris Frith then discussed sharing records with patients in his surgery and gave a demonstration of the ways in which patients can do this via the surgery web site and EMiS access. He described the advantages of patient access as increasing trust and accuracy and reducing errors. The usage figures are still quite low bu8t some useful insights are being gained.

Another demonstration, which had been arranged at short notice, was by Brian Seaton, who showed his own medical record from a credit card USB drive using HealtheCard and discussed the layout and cost issues related to keeping the record up to date and accessing it (especially when NHS computers are having USB ports removed because of data slurping).

The final part of the day was workshop where delegates divided into groups to consider some of the issues around business processes and consent models which are being raised by this work and still being grappled with.

Generally the day was quite a useful opportunity to learn about the latest developments and explore some of the ongoing issues, which are important for everyone whether healthcare professionals or patients. It will be interesting to see what the effects of the public information campaigns in early adopter areas will be and how many of the current proposals are still in place ina years time.

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