How do we set the records straight?
In the United Kingdom there are plans to make elements of patients' electronic health records available to any practitioner with "a legitimate care relationship" anywhere in the country. There is justifiable unease about confidentiality and consent in this new environment. Will patients understand what is happening to information about them, and will that information be secure?
Another cause for concern, which is perhaps even more fundamental, has to do with how a medical record's context contributes to its meaning.
Half of general practices in the United Kingdom are now minimising their use of paper, with routine record keeping being done on computer rather than on the traditional record card. While appreciating the greater accessibility of information in a computerised record, many GPs still miss the feeling that, just by holding a records envelope in their hand, all sorts of knowledge will seep into their brains. Thickness, weight, state of repair, handwriting, and wee diagrams all contribute. Why can't electronic records carry more of this context?
What GPs think of as useful context is probably just what patients will wish to be restricted.
Some things have not, so far, been changed by computerised records. In most practices and computerised units in hospitals the record is held on site, and the computer server mimics a filing cabinet. A patient's continuation notes have a limited readership, and those who do read the record are part of a team and know each other. When communication is with a different social group a specific message is created: a referral
letter from primary to secondary care or a discharge summary or clinic letter in the other direction.
What is proposed in the NHS care records service is that items that are recorded as continuation notes will be extracted and made available across the NHS. Thus another aspect of context - the purpose of the record item - is lost. Berg and Goorman ( International Journal of Medical Informatics 1999;56: 51-60[CrossRef][ISI][Medline]) described the difficulties of reconstructing the meaning of a message sent from a distance, unless all sorts of context came with it. For instance, a summary code of "depression" may be recorded for an episode of severe depression as defined by formal diagnostic criteria; alternatively the same code may be used for a consultation with someone who is not coping with stress and is showing some features of mild depression. This
distinction is important: practitioners local to the author will be able to infer the difference: a remote practitioner, who only has access to the coded summary, will not.
I recently had a consultation with someone who had a problem with alcohol intake in the 1980s and early 1990s. He has had an application for permanent health insurance turned down (on the basis of what was in
the computerised summary of his records) and was somewhat miffed. We talked about the relations between the computer record, the written record, and his current view of his previous condition.
This brings a dilemma. On one hand is the case for including as much context as possible in what goes into the care records service. This is in the hope that the meaning of record entries may survive the distance
travelled. For meaning to be preserved in this way the record has to carry surrogates for the cues that we traditionally pick up by handling a handwritten record and from personal knowledge of the author. On the other hand, what GPs think of as useful context is probably just what the patient (or third parties) are likely to wish to be restricted in distribution. Given the opportunity of granting consent, this is what they may refuse.
As a jobbing practitioner I am not sure how to handle this. It takes shared decision making to new heights if the decision is about what is included in the record. Is it sensible to expect clinical systems to make explicit to the parties in the consultation just what is going to
remain local and what is going to the records service? What is the legal status of information that we choose to keep local? Can we manage consultations in the future without this distinction being explicit?
The government is in the process of spending billions of pounds on the national programme for IT in the NHS. It was explicit in the Department of Health's 1998 Information for Health that one purpose of electronic
health records was to provide service managers with accurate data about activity in the health service. At this late stage we still do not know how much of the local medical record is going to be exported to the records service. We do not know what control patients will have over what information about them is held there. We do not know if the amount of context required for a remote record to be meaningful exceeds or is less than patients will consent to. We do not know how the passage of
time will affect patients' and doctors' interpretations of events. In short, it is not clear how a centralised record system will sit with the dispersed relationships that constitute primary care or whether the government will get any useful return on its investment.
Paul Robinson, general practitioner
Snainton, North Yorkshire Paul01@btconnect.com