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Helen asked to see her records under the Data Protection Act 1998, as she is fully entitled to do, and she discovered when she examined them that there was a serious mistake in them. She was effectively and, I repeat, mistakenly, registered as an alcoholic. Helen resolved, given her anger about the mistake, her concern about the many people who have access to even the correct parts of her record, and her anxiety about the even larger number who might well have access to it as the NHS computerisation programme proceeds, that she wanted her records removed from NHS systems altogether.
Now the debate rages over who should be allowed to see these records, under what circumstances, and whether it is possible (and whether it is practical) to "opt out" of the system altogether.
Other NHS patients will be as concerned as Helen (some media discussion on the matter has already occurred) about the confidentiality of their records, if those records end up on a national system that a large number of NHS bodies and individuals, including social workers for example, can access. After all, those records will hold data set down by nurses, health visitors, midwives, physiotherapists, psychologists, laboratory staff, sexually transmitted disease and addiction workers, ambulance crews and so forth. It is a long list. Those records will contain information about such sensitive matters as sexuality, ethnicity, genetics, mental health, intellectual impairment, illicit drug use, imprisonment, abortion, contraception, impotence, paternity, infertility, HIV, personal relationships, domestic violence, rape and abuse in childhood—again, a long list.
All very important issues, all needing consideration. However, in Helen's case it would seem that the most obvious point is being overlooked. This is not really a case of how to control the distribution of information, it is a case of how to handle an error within that information. Does the system have a well thought out mechanism to handle the inevitable errors that will occur from time to time? I don't see anyone in parliament (or the news media) actually asking this question. If the system has no mechanism for coping with errors then the system is broken and cannot be used until it is fixed... end of story.
Now it seems to me (possibly naively) that the purpose of any record-keeping system is to provide the ability to honestly and accurately review past events. This holds equally for financial transactions, criminal records and medical record. It also seems to me that there are two sides to every transaction. In particular, if Helen Wilkinson was declared to be an alcoholic then the declaration was made by someone. Helen's medical record surely must include the names and details of all the people who have contributed to Helen's medical history including those who wrote the record itself.
Thus, if there are false statements in any medical record, erasing the record is a very bad thing to do. Medical mistakes are well known for their capability to kill people; erasing the record of such mistakes is asking for a disaster to happen. If some medical practitioner is out there doing the wrong thing then most certainly their mistakes should be a matter of public record.
It is also important for the entire medical industry to realise that when they are writing someone else's medical record, they are also writing their own career progression. Their actions must remain open to scrutiny.
Back to Helen's problem... my solution is to add to the record, not attempt to erase it. If Helen has evidence that she is not alcoholic and that the original statement was false then the correction should be appended to her existing record along with whatever new evidence has come to light and some sort of inquest into how the mistake was made in the first place. Indeed, if the mistake was so bad as to result in legal action against the medical practitioner, then a note should be added to all the medical records that this practioner has been involved with to say that there are potential issues with the quality of their work.
On further inspection, it seems to have been a clerical error rather than a mistaken medical practitioner.
"I discovered that, without my consent, every hospital procedure I had had done had been sent to a private company in Warwick -- McKesson. I discovered I had been put down as attending an alcohol advisory service. They mixed it up with a surgical procedure," she said.
In this particular case, such a clerical error is annoying and embarrassing but not going to put anyone's life in danger. On the other hand, similar errors about alergy information or drug interaction could easily be life threatening. The conclusion is the same -- errasing the error just helps hide the person who made the mistake. In this case, both the clerical staff involved and the procedures followed should be open to scrutiny. The names of all the individuals and companies involved must be included in the record as a guarantee that such people will take their jobs seriously. If they are not up to the job then maybe find them a job with less responsibility.
All too often, such support and data-entry jobs are low paid, seen as menial and trivial, and given to the most junior person in the office. How often are the results checked? These jobs are where companies like to squeeze hard to save money, and the results tend to speak for themselves.
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