In Summary

Record summaries can play an important role in the facilitation of clinical communication, but only with careful thought, which is often lacking, as illustrated by the sad tale of the English Summary Care Record (SCR) and the happier tale of the Scottish Emergency Care Summary.

The first thing to understand about a “summary record” is that the term is a meaningless. There are potentially a practically infinite number of summaries that could be created from an entire record, but for a summary to be useful it has to be for a clear purpose understood both by those creating and those using the summary. Scotland got this right with a clear purpose “Emergency Care” now be successfully extended for another clear purpose as the “Palliative Care Summary”. While the English SCR is basically also an emergency care summary it has been touted as suitable for a whole range of purposes including many for which it not fit (“when you only tool is a hammer all your problems look like nails”) and while this is not the only reason for its’ lack of progress this lack of clarity of purposes remains a key problem for the SCR.

What then is a record summary and how can we describe the various types of summary that might be useful?

First, let’s consider the difference between and integrated a standalone summary. The distinguishing feature of an integrated summary is that the rest of the record from which it is drawn is immediately available. i.e. you can “drill down” into the summary and see the detailed information that underpins it. Today, such drill down facilities are usually only available when the record and summary are part of the same system, but this not need be the case and in the future it will become increasingly common to be able to drilldown to data held in other systems. With a standalone summary the user only has easy access to the information held in the summary and it thus has to contain all the information that might be needed to support its purpose. Clearly a different approach is required in the design of a standalone summary compared to an integrated one. The summary view in a GP system is an integrated summary while the SCR and ECS are standalone summaries.

I also find it useful to think of summaries as being either horizontal or vertical and while this is sometimes an oversimplification I find it useful. A horizontal summary is one that is wide but shallow it contains top-level information from many parts of the record. The SCR, the ECS, and the summary view in a GP system are all horizontal summaries. A vertical summary is narrow but deep containing most or all of the information from a few parts of the record. A medication summary would be an example of a pure vertical summary. A more complex example would be a disease specific summary, say a diabetic shared care record. This is a summary of the record containing detailed information relating to diabetic care (and thus vertical) but would also have summary information from other parts of the record (and thus have some horizontal components) the Scottish Palliative Care Summary is another example of complex summary.

My view is that to be really useful summaries should be statefull i.e. that they should reflect the current state of the patient. With a simple summary like a medication summary it may be possible to maintain statefullness automatically, but in more complex summaries a degree of human intervention is usually required to maintain statefullness and this is well described by Ian McNicholl in his blog where he talks about the maintenance of a “meta-narrative”. Some summaries are stateless and just represent a journal of all activity within the scope of the summary. The Spine Personal Spine Information Service (PCIS) and the abandoned London Shared Record were such stateless records, just a spike onto which a range of clinical correspondence had been placed. Such summaries have some value but to understand the current state of the patient the user has to read back through the record and risks missing significant information buried at the bottom of the pile. Such summaries have the advantage that they can be automatically created drawing on a large range of sources, but in my view unless supplemented by an appropriate statefull summary are of limited value. Some proposal for the SCR would combine the statless PSIS with the GP maintained statefull SCR as it is today.

One of the key uses I see for a summary is the sharing of information and the management of a care plan and care pathways over the Hawking Horizon (a patient is often on many pathways but there should only ever be a single integrated care plan) Ideally such a summary should operate under shared governance and be the result of considered publication in to the shared space by all of the actors involved in the care plan (including the patient and members of their informal care networks) systems should facilitate the creation of such summaries automatically updating those parts that can safely be automatically maintained, but will require active maintenance by the human actors involved. The systems managing the summary should provide mechanism for reconciling information coming from multiple sources and resolving differences of views (some analogies exist with the Wikipedia approach which allows the resolution of differences on a discussion page behind each article) but should be able to represent dissonance where resolution can’t be achieved.

Summaries are often implemented as read-only and this approach certainly simplifies the technical and governance issues associated with keeping a summary in sync with its source systems, but it might be desirable to allow information to be edited or entered into the summary with mechanisms to update source systems but any mechanism should not pollute source records with information they don’t need, want or consider of adequate quality.

Summaries could usefully supplement and integrate with the stateless status feed proposed for Fredbook and form part of the rich online environment in which patients, informal care networks and healthcare professional come together.

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