Patient access to records must be acceptable to both parties

Editor—Mandl et al think that patients should be able to annotate and challenge interpretations in their records, but in her commentary MacDonald says that this would have British doctors reeling in horror.¹

The utility of patients auditing and being able to correct their computer held records has been shown in several studies, including studies of administrative records in hospital² and problem and drug lists in diabetes outpatient clinics³ and general practice.⁴ In one study in general practice 24% of patients said that there were mistakes and 30% omissions in their records, including allergies, dates of birth, addresses, current drug treatments and items on the problem list, smoking details, height, weight, alcohol history, and family history.⁴

Other challenges to achieving Mandl et al's aim exist. There may be items on the record that the doctor does not want the patient to see. The desire for such censoring is not always due to paternalism; it may be due to the need for time for discussion with the patient. In the 1980s, when moving from poor quality paper records to computerised records with a copy for the patient, doctors censored many items, apparently without due cause, but probably because they could not be sure that these had yet been discussed with the patient.⁵

Patients may not understand their medical record, and we need to find ways to use it as a gateway to explanations and further information, which may be available on the web. Patients, as well as professionals, need more evidence based discussion about the uses of records so that they can make informed choices about who should have access to their record. The recent study of communication between general medical and general dental practitioners found that at baseline less than half the patients thought that dentists should have full access to their general medical record.⁴ The experience of holding their own summary record made them more positive towards the idea.

Mandl et al are American and have problems (such as competition between institutions and reluctance to share information) that are of less concern or have been solved in the United Kingdom. In the United Kingdom, however, we have an important problem—equity of access to information for patients—that they do not mention. We need to investigate different ways of achieving equitable access to medical records which both patients and professionals will find useful and acceptable.