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Towards a Consent and Licence Model for Non-clinical Use of Clinical Recordings and Images
- Helen S Cameron, Rachel Ellaway and Michael Ross (24 May 2006)
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Do patients wish to be asked for their consent prior to the use of their personal medical information in a lecture to healthcare professionals?
- Lucy A Kirkham, Andrew McIndoe (30 August 2006)
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Helen S Cameron, Director Medical Teaching Organisation University of Edinburgh, Chancellor's Building, 49 Little France Crescent, Edinburgh EH16 4SB, Rachel Ellaway and Michael Ross
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We read “When lecturers need patient consent’’(1) with interest having recently completed a UK-wide project(2) to review the issues associated with using clinical recordings for academic non-clinical purposes such as teaching. We agree with many of Yentis’ concerns but offer an alternative solution. Clinical teachers often use shared digitised images and seek reassurance that appropriate consent has been obtained from those patients not in their direct care. We suggest that the clinician arranging the recording is the one best placed to consider the benefits and harms of using such data for non-clinical purposes and to request consent as required. Similarly the Health Insurance Portability and Accountability Act 1996(3) in the USA locates responsibility for clearing clinical information for exchange with the clinician. HIPAA does not encompass terms of use or consent since the framework is used for health insurance portability. For clinical information to be used in teaching, such terms must be explicit, particularly in a digital age. Creative Commons(4) is a framework of permissions for use of digitised images and we propose an adaptation, the Clinical Commons, to embrace clinical images. Our report advocates further clarification of ‘non-identifiable images’ and a consent and licence system that disaggregates the roles of physician and lecturer even if these are the same individual. Consent obtained by the clinician, or a declaration that this is unnecessary would be held within the healthcare system and associated through a unique identifier with a licence and mark of assurance. The latter, affixed permanently to the clinical image, would demonstrate its provenance and terms of use, based on the patient’s consent and the originator’s copyright while retaining patient confidentiality. Subsequent users of clinical recordings for non-clinical purposes could thus ensure the data has adequate permissions for intended use. 1.BMJ 2006;332:1100 2.CHERRI Project (Common Healthcare Educational Recordings Reusability Infrastructure http://www.cherri.mvm.ed.ac.uk 3.http://www.hipaa.org/ 4.http://creativecommons.org Competing interests: None declared |
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Lucy A Kirkham, Clinical fellow in anaesthesia Bristol Royal Infirmary, Marlborough St, Bristol, BS2 8HW, Andrew McIndoe
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It was recently high-lighted in a BMJ review (Ref 1) that there is a lack of guidance to medical lecturers regarding whether consent should be sought prior to the presentation of a patient’s medical information. Of the 13 royal colleges contacted by Dr Yentis in this review (9 of which responded) one currently issues guidance but this refers only to the use of patients’ photographs in lectures. The GMC and BMA currently allow for the use of anonymised patient images or recordings in teaching without first obtaining the subjects’ consent, providing the public do not have access. Journals such as the BMJ and EMJ have very strict guidelines which require that explicit consent be sought prior to the publication of a patient’s personal medical information. The premise being that anonymity cannot be guaranteed; particularly in this era of internet based journals and therefore consent must be sought. With the advent of powerpoint, there is the potential for dissemination of a lecture to members of the public. Printed handouts of powerpoint slides to large seminar based audiences are not cost efficient, a CD containing all the information and images is both effective and frugal. It is entirely possible to re-present the recorded lecture to an audience of your choosing or post it on the internet. A simple web-based search for information pertinent to a teaching session one might need to give, often yields an entire powerpoint presentation on that very topic. Hood et al have made the point that in consenting patients for the use of medical photos they should be made aware that there is a lack of control over who will see the images (Ref 2). In medical lectures no consent is gained and patients are not warned of the possible dissemination of their information. What do patients actually want with regards to the use of their medical information? With this question in mind I undertook a survey of 100 patients. My aim was to ascertain if they would wish their consent to be sought prior to the presentation of their anonymised or un-anonymised personal medical information in lectures to medical professionals. I approached a random sample of NHS patients on the day surgery unit (DSU), clinical support unit (CSU) and surgical admission unit (SAU) to fill in a structured questionnaire. I introduced myself, stated that I was carrying out a survey which had nothing to do with their medical case but just required their opinion in the form of circling yes/no answers to a series of questions. They were told that they did not have to fill in the questionnaire and that there were no right or wrong answers. Two patients declined to take part in the survey and one questionnaire was rejected as it was only partially filled in. Therefore, I approached a total of 103 patients. If they agreed to fill in the questionnaire I explained that it posed a theoretical situation of a doctor wanting to use information from their notes. That information might be in one of 4 possible forms; medical photos, a case report i.e. their medical story, medical images or blood results. The doctor then wished to either publish it in a journal, which would be available on the internet, a medical text book or present it in a lecture to medical professionals. I explained that with each type of information the doctor was going to make it anonymous in scenario A and in scenario B “for whatever reason” the information was not anonymised. I told them if they circled ‘yes’ that indicated that they would like to be asked for their consent or “permission” before the doctor could use that information and therefore they could potentially refuse permission if they so wanted. If they circled ‘No’ that indicated that they did not want to be asked for their permission before the doctor could use that information. I then left them alone to fill in the questionnaire. The results were such that 55% of respondents wished to be asked for their permission/consent prior to the use of their medical photos in a lecture to medical professionals. If the photos were anonymised, 30% wished to be asked. 58% wanted consent to be sought before a doctor could present their case report/medical story in a lecture, though this figure dropped to 15% if they were not identifiable in the report. 48% wished their consent to be sought before their medical images could be presented in a lecture though only 14% wished to be asked if the scans were anonymised. Finally, 47% wished to be asked for their consent prior to the presentation of their blood results in a lecture to medical professionals. If the results were anonymised 7% wanted their consent to be sought. There is a potential for powerpoint presentations to find their way into non-medical hands via the internet or on CDs. The prospect of their anonymised information appearing in a journal on the internet increased the percentage of patients wishing to be asked for their consent. Medical photos by 15%, 5% in case reports, 4% with anonymised scans and a 6% increase for blood results. This was a small survey with regard to numbers of participants. It was carried out to gain an insight as to what a representative cross section of hospital patients actually want with regard to the use of the information in their notes. Even with anonymity, some of these patients wanted to be asked for their permission prior to the use of their medical information in a lecture to healthcare professionals. Do we need clearer guidelines as to where consent is needed with regards to medical lecturers in order to protect both the patients autonomy and ourselves from litigation? The General Medical Council charged three doctors in 1995 with professional misconduct for not gaining adequate consent prior to publishing a report on a patient. The patient had consented for the use of her information in teaching but no mention of publication had been made(Ref 3). We need to be sure of where the information from our lectures will end up and where we stand both ethically and legally before the patient’s desire for their consent to be sought is ignored. Ref 1. Yentis S M. BMJ 2006;332:1100 Ref2. Catherine A Hood, Tony Hope, Phillip Dove. Videos, photographs, and patient consent. BMJ 2004 329:566-568 Ref 3. Smith R. Publishing information about patients. BMJ 1995 311:1240- 1241 Competing interests: None declared |
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