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 http://bit.ly/dT3d8u 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 http://bit.ly/jAoFWV (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 http://bit.ly/lfq3f3 and form part of the rich online environment in which patients, informal care networks and healthcare professional come together.

Secondary Uses of Data – A Poachers Tale

Early in my career in health informatics I had plans to make myself fabulously rich by selling pseudonymised patient data from GP for a range of secondary purposes. I managed to spend £15 million of my backers money giving away 1000 GP systems and established a database of 6 million patients records it all ended in tears (at least from the financial perspective) in 1992.

In those early days I had a naïve view of the extent to which pseudonymisation could protect patient privacy and the ease with which data could be used for secondary purposes, so in this world I am very much a poacher turned gamekeeper, but one that still believes in the massive benefits that could flow from intelligent secondary use of patient data.

In this blog piece I won’t dwell on issues of patient privacy, suffice it to say for now, that I don’t now believe that pseudonymisation of rich datasets is fully effective but I do believe that with a sophisticated approach that we can adequately protect patient privacy when we use their data for secondary purposes. What I want to concentrate on here are the challenges of using data for secondary purposes that have nothing to do with the need to protect patient privacy.

There are two ways in which we might consider the use of data secondary, the first is that the use is not directly connected with the care of the individual patient whose data it is and the second is that it’s a use not of direct concern to the person collecting the data. Here I want to concentrate on the second definition uses with which the collector of the data is not concerned and indeed may even be ignorant of. (There are clearly some secondary uses in the sense of the first definition with which the data collector is very concerned – maybe their own research interest.)

There are a number of issues that need to be considered when using data for secondary purposes.

• What were the primary purposes for which the data were collected and how do the requirements of these primary purposes fit with the proposed secondary uses?

• Is there a conflict as to how something is best recorded for the secondary purposes? The requirements of the primary use should and will prevail

• How aware is the data recorder of the secondary purpose?. Awareness may encourage the recorder to take more care that the data is fit for the secondary purpose or may result in a range of gaming activities when they have motivation to “spin” the results of the secondary use either to their own benefit or that of the patient. E.g. blood pressure readings clustering just below the QoF cut of point.

• How important is accuracy in the recording of data to the recorder? A particular issue where users are forced to record data by system design or management pressure. If you have to record something but the accuracy of record has no direct impact on you then you may guess or make-up data or just type any old rubbish to get past a mandatory field for which you don’t have valid data. E.g. A GP recording prescribing details will take great care to record the information accurately as this will be use to produce the prescription and errors would create a serious patient risk, whereas they might be tempted to just guess to complete a mandatory dataset where they don’t see value in recording the data.

• Are definitions shared between the primary and secondary purpose and between different recorders, have they even been told what assumptions about definitions have been made? Researchers are typically much tighter that frontline data recorders e.g. some clinicians will record a diagnoses of “asthma” on the basis of limited clinical findings, just because it is probably right while others will want further confirmation and just record it as “wheezing”.

• System design and configuration can have a profound effect on what and how people record data and the extent to which they code data. Most work using data from multiple GP systems assumes data across different systems are directly compatible when the evidence suggests this is often not the case – Work by Professor Simon de Lusignan based on video observation of many consultations shows a four fold difference between the major systems in the number of consultations with no coded data and a two-fold difference in the average number of codes used http://bit.ly/kO5tgw . He also found that the way different systems mange pickings list had a significant effect on the data entered http://1.usa.gov/itbtc5 Secondary uses have to take account of system biases.

This bring us to Van de Lei’s law, coined by the eponymous Dutch health informatician “Data should not be used other than for the purposes for which it was collected” While I would not take this extreme position (and I suspect Van de Lei said it to emphasise the point, rather that to be taken literally) There are significant challenges in using data where the use is not one that was in the mind of the recorder when they recorded it.

There is a massive growth of interest in health analytics based on data extracted from GP systems. Data quality is adequate for many of these purposes but not as good or consistent as some secondary users seem to assume. While there can be dangers in telling recorders about the secondary uses to which the data they enter will be put in most cases these are greatly outweighed by the benefits of making recorders aware of secondary uses and trying to secure their cooperation to make sure what they enter is fit for the secondary uses to which it will be put.

Users of data for secondary purpose beware.