We would appreciate COPE Forum’s advice with regard to consent and confidentiality in the publication of case histories.
Our journal is published three times a year and has a relatively small circulation but also goes to some postgraduate medical libraries, so is potentially available to a much wider audience.
Our subscribers are doctors working with patients presenting with sexual difficulties in a variety of settings. Training is experiential, through the presentation of cases in seminar groups with a designated leader. Case presentation at our meetings and in the journal articles also provides learning opportunities and peer review.
As well as addressing (in an ordinary medical way) the physical aspects of the sexual problem presented, our work explicitly uses the study of the doctor–patient relationship to shed light on the presenting difficulties. In other words, the doctor–patient relationship is one of our key treatment ‘tools’ allowing connections to be made between the body and the mind in relation to the sexual problem.
These consultations almost always include intimate and sensitive information. Therefore, it had previously been felt that asking for permission to present cases would disrupt the very doctor–patient relationship on which our work depends. As a result, we have tended instead to seek to ensure anonymity by disguising personal details in presentations at meetings and in the journal rather than asking for consent from the patient.
We recognise that this practice is out of line with that recommended by the BMA and the GMC.
Our main concern relates to the possibility of limiting the availability of suitable case material for teaching purposes in presentations and in the journal if doctors felt unable to comply with a requirement to obtain patient consent. This would seriously interfere with the training.
We would prefer to continue using our current guidance where consent is recommended rather than mandatory. Indeed, we would like to suggest that where the doctor is satisfied that the information can be anonymised, he/she does not need to try to obtain consent.
We have considered adding a statement in the journal for patients who might read it, and recognise or believe that they recognise themselves, or their story. One of our founder members addressed this very idea in the preface of a book, asking patients to accept that no-one but themselves would be able to recognise them and to understand that, although each is unique, there are many like them who share similar problems; they are not alone.
We would appreciate your advice on the following points:
1) Is there any justification for continuing the current practice of ensuring anonymity by altering elements of the case history—for example, name, occupation, family details, appearance, geographical location, etc—and continuing to avoid an absolute requirement to obtain consent from patients? As a training body can we claim ‘special case status’ in view of the need to use case material to further training aims for future generations of doctors?
2) It has been suggested by a lawyer who is however not a medicolegal expert that we might interpret the GMC guidance and the NHS Code of Practice on Confidentiality to mean that consent is not needed where the doctor is satisfied that he or she can anonymise the data to be used (bearing in mind that the symptoms might be an identifier).
3) If you feel that we do need to change our practice and require authors to obtain consent from patients whose case histories they wish to present; it would be very helpful to have your advice on how this might be implemented.
All acknowledged that this is a difficult situation. This issue has come before the Forum many times, particularly in the case of child protection procedures. Such cases have proved almost impossible to publish in the UK and the public interest defence (that public health interests in knowing the information are greater than the requirement for confidentiality) does not seem to hold up.
The Forum warned that if enough information is available in the published report that a good investigative journalist can identify the patient, then the editor is in breach of the Data Protection Act. The Forum also warned that the editor, if on the UK medical register, could be in breach of the General Medical Council (GMC) regulations and was advised to consult the GMC’s documents Good Medical Practice and Patient Confidentiality and Consent.
The Forum also advised contacting the GMC for advice and approaching the Information Commissioner for the DPA. The Forum noted that even producing educational and training leaflets can be contentious and consent should be sought and a disclaimer added to the effect that patients should accept that no-one but themselves would be able to recognise them and that patients need to understand that, although each is unique, there are many like them who share similar problems. PLoS and the BMJ have policies on these issues and it was suggested that the editor might be able to adapt these.
While some advised seeking consent or publishing vignettes of anonymised cases, it is almost impossible to fully anonymise case studies and often such heavily anonymised cases can be educationally useless.
As recommended, we have spoken to the Information Commissioner for the DPA. He advised us that anonymised information could be published, and said that if the patient is not 100% sure that he/she is being described, then this is anonymised information. He said that it would nevertheless be best to ask for consent to publish a case history in its anonymised form.
We filled out the questionnaire from the GMC consultation on their new draft guidance on confidentiality. We have noted that the GMC proposes to change the recommendation that consent is obtained whether or not you think the patient can be identified, to recommending that consent is obtained if the information cannot be anonymised. The glossary now adds the word “reasonably” when discussing identification of information.
Pending the outcome of the GMC Consultation, it is likely that we will change our Guidelines to contributors to recommend that consent is obtained prior to publication of case reports in our journal, even when these have been anonymised. In situations where it is not possible to obtain consent, authors would be asked to confirm that, in their opinion, there is adequate anonymisation of the patient’s details; we have also produced a form for this purpose.
We raised these issues with the members of our organisation at a meeting in November 2008. We explained the background and provided a sample consent form for their use, together with our plans to provide sample patient letters to request consent, clinic information leaflets and suggestions on how to ensure anonymisation. We found that most were in agreement with our suggestions.