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Martin K. Johns, Director of Medical Photography & Illustration, Addenbrookes Hospital, Hills Road, Cambridge CB2 2QQ, UK. E-mail: [email protected] Informed consent for clinical photography MARTIN K. JOHNS The question of (informed) consent to medical photog- raphy has long been a vexed one. This paper briefly considers key landmarks in the debate, and examines in detail the evolution of the Addenbrooke’s NHS Trust policy Photography and Video Recordings of Patients: Confidentiality and Consent, Copyright and Storage. The impact of the 1998 Data Protection Act, the Depart- ment of Health’s Model Policy on Consent, and the implications of wider access to digital photography are discussed together with their integration into the Addenbrooke’s policy. Introduction ‘Patients have a fundamental legal and ethical right to determine what happens to their bodies’. 1 This is equally true whether the patient is being asked to consent to major surgery or to procedures such as photography or video recording; while these may seem to be relatively trivial when compared to major surgery, further unconsented use of such records may result in loss of privacy and dignity, and may cause major distress. Clinical photographs and video recordings are the only form of medical intervention to produce recognizable images of a patient identifiable to the lay viewer – this does not necessarily have to be an outsider, but may be a member of the hospital staff who sees them ‘in passing’. Great care therefore needs to be taken to obtain proper informed consent prior to clinical photog- raphy and video recordings, and to ensure that specific consent is obtained for publication. In order to obtain ‘informed’ consent, the patient must understand all the issues with regard to the consent, and it must not be obtained under any form of duress. In this paper, all references to images, recordings and photography can be taken to refer to both photography and video recording. Some historical landmarks Until the mid 1980s, consent to photography did not have a high profile within the NHS and very few references exist before 1984. Medical photographic publications hold two of the key references: Longmore in 1949 ( and possibly in earlier editions) stated that ‘convention decrees that the permission of the patient should always be sought before he or she is photographed’, but goes on to say that ‘too much emphasis should not be placed on this aspect lest it serve to put the patient off as a result . . .’. He further suggests that the anonymity of all patients should be preserved wherever possible, and comments on the added desirability of obtaining consent – especially in the case of facial photographs – if there is any likelihood of subsequent publication of the record, pointing out the risks of litigation. Most significantly he states that every medical photograph is a part of hospital records, and that the copyright of the images is vested in the employing authorities. 2 In 1979, Turnbull discussed issues concerning the welfare of the patient, including the requirement for informed consent of the patient before photography is undertaken. 3 She too stated that the ownership of copyright is vested in the employer in the case of an employed photographer, and this is still the case under the more recent Copyright, Designs and Patents Act ( 1988 ). Until the early 1980s this situation remained, and consent to photography, while seen as desirable by medical photographers, was only rarely obtained in practice for subsequent publication. A turning point came in 1984 with a ruling from the Health Service Commissioner, which resulted from a case concerning a man who had received extensive treatment at a teaching hospital for lymphatic disease. 4 After the death of the professor who had been treating him, he learned to his embarrassment and distress that two full-length frontal photographs of himself, unclothed and unmasked, had been published in a medical textbook. The textbook also contained the patient’s initials and hospital number. The Commissioner ruled that the patient had a right to consent ( or otherwise) to the use of such images, and that the hospital in question should have had an appropriate procedure for obtaining informed consent before con- fidential clinical information was used for purposes other than the patient’s treatment. At about this time, and triggered by the same incident, the North East Thames Region of the NHS developed a policy on confidentiality of illustrative clinical records. This was subsequently published in this Journal, 5 and later formed the basis of the Institute of Medical Illustrators’ publication A Code of Responsible Practice – Protocols for ethical conduct and legal compliance for medical illustrators. 6 These events provoked the development of the Consent to Photography and Video Recordings of Patients policy at Addenbrooke ’s Hospital, Cambridge, where hitherto no consent had been required. The policy was introduced early in 1986 after wide consultations with both the medical and the administrative staff of the hospital, the associated ISSN 0140-511X printed/ISSN 1465-3494 online/02/020059-05 © 2002 Institute of Medical Illustrators DOI: 10.1080/01405110220140838 Journal of Audiovisual Media in Medicine, Vol. 25, No. 2, pp. 59–63 J Vis Commun Med Downloaded from informahealthcare.com by University of Bath on 11/02/14 For personal use only.

Informed consent for clinical photography

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Martin K. Johns, Director of Medical Photography & Illustration,Addenbrookes Hospital, Hills Road, Cambridge CB2 2QQ, UK. E-mail:[email protected]

Informed consent for clinical photography

MARTIN K. JOHNS

The question of (informed) consent to medical photog-raphy has long been a vexed one. This paper brieflyconsiders key landmarks in the debate, and examines indetail the evolution of the Addenbrooke’s NHS Trustpolicy Photography and Video Recordings of Patients:Confidentiality and Consent, Copyright and Storage.The impact of the 1998 Data Protection Act, the Depart-ment of Health’s Model Policy on Consent, and theimplications of wider access to digital photography arediscussed together with their integration into theAddenbrooke’s policy.

Introduction

‘Patients have a fundamental legal and ethical right todetermine what happens to their bodies’.1 This is equallytrue whether the patient is being asked to consent to majorsurgery or to procedures such as photography or videorecording; while these may seem to be relatively trivialwhen compared to major surgery, further unconsented useof such records may result in loss of privacy and dignity,and may cause major distress. Clinical photographs andvideo recordings are the only form of medical interventionto produce recognizable images of a patient identifiable tothe lay viewer – this does not necessarily have to be anoutsider, but may be a member of the hospital staff who seesthem ‘in passing’. Great care therefore needs to be taken toobtain proper informed consent prior to clinical photog-raphy and video recordings, and to ensure that specificconsent is obtained for publication. In order to obtain‘informed’ consent, the patient must understand all theissues with regard to the consent, and it must not beobtained under any form of duress. In this paper, allreferences to images, recordings and photography can betaken to refer to both photography and video recording.

Some historical landmarks

Until the mid 1980s, consent to photography did not have ahigh profile within the NHS and very few references existbefore 1984. Medical photographic publications hold two ofthe key references: Longmore in 1949 (and possibly in earliereditions) stated that ‘convention decrees that the permissionof the patient should always be sought before he or she isphotographed’, but goes on to say that ‘too much emphasis

should not be placed on this aspect lest it serve to put thepatient off as a result . . .’. He further suggests that theanonymity of all patients should be preserved whereverpossible, and comments on the added desirability ofobtaining consent – especially in the case of facialphotographs – if there is any likelihood of subsequentpublication of the record, pointing out the risks of litigation.Most significantly he states that every medical photograph isa part of hospital records, and that the copyright of the imagesis vested in the employing authorities.2 In 1979, Turnbulldiscussed issues concerning the welfare of the patient,including the requirement for informed consent of the patientbefore photography is undertaken.3 She too stated that theownership of copyright is vested in the employer in the caseof an employed photographer, and this is still the case underthe more recent Copyright, Designs and Patents Act (1988).

Until the early 1980s this situation remained, and consentto photography, while seen as desirable by medicalphotographers, was only rarely obtained in practice forsubsequent publication.

A turning point came in 1984 with a ruling from theHealth Service Commissioner, which resulted from a caseconcerning a man who had received extensive treatment ata teaching hospital for lymphatic disease.4 After the death ofthe professor who had been treating him, he learned to hisembarrassment and distress that two full-length frontalphotographs of himself, unclothed and unmasked, had beenpublished in a medical textbook. The textbook alsocontained the patient’s initials and hospital number. TheCommissioner ruled that the patient had a right to consent(or otherwise) to the use of such images, and that thehospital in question should have had an appropriateprocedure for obtaining informed consent before con-fidential clinical information was used for purposes otherthan the patient’s treatment.

At about this time, and triggered by the same incident, theNorth East Thames Region of the NHS developed a policyon confidentiality of illustrative clinical records. This wassubsequently published in this Journal,5 and later formedthe basis of the Institute of Medical Illustrators’ publicationA Code of Responsible Practice – Protocols for ethicalconduct and legal compliance for medical illustrators.6

These events provoked the development of the Consent toPhotography and Video Recordings of Patients policy atAddenbrooke ’s Hospital, Cambridge, where hitherto noconsent had been required. The policy was introduced earlyin 1986 after wide consultations with both the medical andthe administrative staff of the hospital, the associated

ISSN 0140-511X printed/ISSN 1465-3494 online/02/020059-05 © 2002 Institute of Medical Illustrators

DOI: 10.1080/01405110220140838

Journal of Audiovisual Media in Medicine, Vol. 25, No. 2, pp. 59–63

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Clinical School, and the hospital’s legal advisers. It is true tosay that the policy was neither liked nor appreciated by aminority of the medical staff, but the obtaining of informedconsent soon became a routine part of clinical photographyrequests. The 1986 policy clearly stated the hospital’s viewthat all images of patients illustrating a condition or anaspect of treatment, are medical records, and thus automati-cally protected in the same way as all other medical records,irrespective of the photographer.

One section of this policy that never attained generalacceptance or observation was a requirement that anyonetaking photographs of patients (other than staff from theMedical Illustration Department) should register theiractivity with the Director of Medical Illustration. This wasintroduced because the hospital authorities could clearly seethe need to trace the whereabouts of any photographs takenof their patients, and in particular so they could be tracedwhen a patient requested disclosure of their medicalrecords. There were very few registrations under thisscheme (which was not intended to restrict the right ofdoctors or others to take photographs of patients), and as aresult, it has been difficult to locate such photographs onseveral occasions. Patients know that they have hadphotographs taken, but do not differentiate between amedical photographer and a doctor taking them. Thisweakness was addressed in the revised policy introduced in1999 (discussed later).

The next milestone came in 1989. Slue demonstrated thatthe common practice of placing a black bar across the eyesonly anonymizes the subject to the viewer who does notknow the subject and, as such, is an unsatisfactory means ofanonymization.7 Gilson confirmed this argument in 1994,and further suggested that eye masking dehumanizes thepatient – he recommended that full consent to publication beobtained as opposed to any form of masking.8

The advent of digital photography opened the door tomany more sophisticated ways to anonymize clinicalphotographs, but in the author’s opinion these should beresisted and proper informed consent obtained. Littleappears to have been written to date on this topic, butHayden discusses acceptable manipulations in the relatedtopics of publication and presentation of scientificresearch.9 Acceptable manipulation is generally defined asincluding ‘global’ adjustments of the entire image, such aswhite balancing or contrast correction, and he proposes thatphotographic or digital ‘tricks’ are unacceptable alterationsof the original data which can bring the truthfulness of theentire research into question.

Another major landmark was the attempted publication ofthe video Everyday Operations. The quick response by theNHS Executive to obtain a High Court injunction banningits sale and distribution, raised the profile of the question ofconsent to publication. In a letter to NHS Trust Chairmenand Chief Executives dated 7 October 1996, the NHS ChiefExecutive required that current procedures [for consent tovideo recording] should be reviewed by November of thatyear. While this letter primarily referred to the use of videorecordings, it also dealt with more general protection anduse of patient information.

In 1998, Hood et al. published ‘Videos, photographs andpatient consent’ in the British Medical Journal.10 Thisspelled out the principle that ‘images taken in the medicalcontext, just like the information that a patient gives a doctor,form part of a patient’s confidential records and shouldtherefore be treated in exactly the same way’. They clearlystate that patients have a right to give consent for photographsto be filed in their case notes, but to refuse permission forthem to be placed in the public domain. They conclude thatpatient consent should be required for publication, evenwhen the image does not identify the patient.

The Addenbrooke’s Policy (1999)

It was against this background that the Addenbrooke’spolicy on Consent to Photography and Video Recordings ofPatients was reviewed. The review was conducted by agroup which included Consultant Medical Staff, SeniorManagers, the Trust’s Data Protection Officer, and theDirector of Medical Illustration. The revised policy clearlystates that all clinical photographs form part of the patient’sconfidential medical record, no matter who the author of thepicture is, or who the owner of the camera and film used totake the photograph is. A clinical photograph is defined asany image which illustrates a patient’s condition or anaspect of their treatment. Its copyright belongs ultimately tothe Secretary of State for Health, although for day to daypurposes, custody of that copyright is vested in Adden-brooke’s NHS Trust.

The policy requires that photography or video recordingsare only carried out after proper informed consent has beenobtained, with certain exceptions such as recording ofsuspected non-accidental injuries and of findings in theunconscious patient: separate provisions are made to coverthese within the policy. It also discusses ‘non-clinical’photography (where the patient is not the prime subject of thephotograph), and the conditions under which external andfreelance professional photographers may be introduced intothe Trust. Copyright and the Data Protection Act is dealt within some depth, as is the use of digital photography.

Medical and other Trust staff who wish to photographpatients themselves (rather than refer them to MedicalPhotography) are required to register what they are doingwith the Trust’s Administrative Director. Registration isnot intended to discourage staff other than the medicalphotographers employed for the purpose from takingclinical photographs, rather it is intended to ensure that theresulting photographs are taken with appropriate equip-ment and that they are stored safely and properly loggedto be traceable in accordance with the provisions of theData Protection Act (1998).

Department of Health Model Policy on Consent

In December 2001, the Department of Health published newguidance to Trusts in a document entitled Good Practice inConsent Implementation Guide.11 The main body of thisdocument comprises a model consent policy which coversall aspects of consent to treatment, including photography

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and video recordings. It also contains four model forms: onefor patients able to consent for themselves; one for thosewith parental responsibility consenting on behalf of a child/young person; a shorter form combining the first two for usewhere the procedure does not involve any impairment ofconsciousness; and a form for adults who lack capacity toconsent to a particular treatment. The timetable forintroduction of the policy and its associated forms is tight –Trusts are expected to have introduced the forms by Aprilthis year and adopted the model policy by October 2002.Neither the new forms nor the policy change the currentposition on when written (as opposed to oral) consent totreatment is necessary, and leaves this to local determinationwithin the broad guidelines set out in the policy. Section 8of the policy deals with clinical photography and conven-tional or digital video recordings and is the main section ofinterest to medical illustrators.

Paragraph 1 opens with the clear statement that photo-graphic and video recordings made for clinical purposesform part of a patient’s record, and reminds healthprofessionals that if recording is an integral part of anotherprocedure for which consent will be obtained, then theyshould ensure that the patient is aware that photographs orvideo recordings will exist as a result of that procedure.

Specific written consent to photography for treatment andassessment purposes only is therefore not required underthis policy, but paragraph 2 states that such recordings mustnot be used for ‘any purpose other than the patient’s care orthe audit of that care without the express consent of thepatient and requires that consent in writing is obtained ifsuch a recording is to be used for education, publication orresearch purposes’.12

There are two further requirements laid out in thisparagraph. The first of these is that patients must be madeaware that once the material is placed in the public domain,future control of the use of the image may not be possible.This is particularly the case with electronic publications,and reminds readers that with the current levels of securityon the Internet, there is little to ensure that such images arenot widely seen, distributed or misused.13 The secondrequirement is that a child’s wishes about publicationoverride any consent that may have been given by a personwith parental responsibility: if a child does not wish a recordto be published, it must not be published.

Paragraph 3 broadens the use of ‘record only’ photo-graphs or videos, and states that they may be used within theclinical setting for education and research purposes withoutthe express consent of the patient as long as the policy iswell publicized, allowing a patient to ‘opt out’ of such useof his/her images. While this paragraph was clearlyintroduced to ease the way to local teaching, it is notintended to provide a carte blanche for the use of clinicalphotographs in any context, and the policy does reiterate therequirement for consent to any form of publication.

The fourth paragraph deals with recordings made specifi-cally for education, publication or research purposes, wherespecific written consent is required both to make therecording and to use it. Safeguards for the patient are builtin: they are free to stop the recording at any stage and are

entitled to view it prior to deciding whether to give consentto its use. If they decide that they are not happy for therecording to be used, it must be destroyed. Healthprofessionals are also reminded that they must give fullinformation to the patients about possible future uses of thematerial, including the fact that it may not be possible towithdraw it once in the public domain.

Paragraph 5 raises the question of the unconscious patientin the context of recordings specifically made for education,publication or research. Here the recording may be made,but consent must be obtained as soon as the patient regainscapacity. It stresses that the recording must not be used untilconsent for its use has been obtained and that if the patientdoes not consent, the record must be destroyed.

The final paragraph deals with the situation where thepatient is likely to be permanently unable to give or withholdconsent. In this case, agreement should be sought fromsomeone close to the patient. The document is clear that nouse may be made of any recording that might be against theinterests of the patient, and that if at all possible, otherpatients who are in a position to consent should be used.

Section 5 of the model policy deals with responsibility forseeking consent, and states that the health professionalcarrying out the procedure is ultimately responsible in lawfor ensuring that the patient is genuinely consenting to whatis being done. It is important to remember that this modelpolicy is principally aimed at physical procedures whichinvolve touching the body of the patient (touching thepatient without valid consent may constitute a battery, andin the event of the patient suffering harm, questions ofnegligence may arise if the patient was inadequatelyinformed). The legal issues surrounding photographs andvideo recordings are different and relate primarily toconfidentiality and data protection, and clarification withthe Department of Health suggests that the health pro-fessional requesting the images will continue, in themajority of cases, to obtain the consent.14

The Addenbrooke’s Policy (2002)

The publication of the Model Policy prompted a review ofthe Addenbrooke’s NHS Trust policy, the most significantchanges being to the consent form itself. The new form(Figure 1) is a three-part NCR set (A4 in size) and it is tobe used in all cases of photography or video recordingexcept where these form an integral part of the procedure(for example, endoscopy). The top copy will be filed in thecase notes, the second given to the patient, and the bottomcopy (which has space on the back for instructions) sentwith the patient to Medical Photography.

The ongoing problem (existing from the first version ofthe Addenbrooke ’s policy in 1986) of non-compliance byhealth professionals (other than Medical Photography andIllustration staff) is addressed in this policy by the consentform, which is also used by doctors or other healthprofessional who take photographs. In these cases, themember of staff concerned will sign the form stating that he/she has registered their photographic activity in accordancewith the Trust policy, that the equipment used is approved

Informed consent for clinical photography 61

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Figure 1. The Addenbrooke’s new consent form, 2002.

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by Medical Photography, and that the pictures will be takenand managed at all times to protect the dignity of thepatient. The copies of the form will be distributed in thesame way, enabling the Medical Photography Departmentto become the first point of contact in cases where thepatient requests disclosure of the photographs.

Addenbrooke’s NHS Trust will continue to seek consentfor all clinical photography on the basis that any photographmay become a teaching photograph although taken in thefirst instance as a simple record. Consent will be obtained atone of three levels (record only, record and teaching orrecord, teaching and specified publication), and details ofthe consent level agreed by the patient retained so thatinappropriate use can be guarded against. The third level ofconsent, including publication, will only be used where aspecific publication is in preparation, and the detail of theproposed publication is written on the form. Any othersubsequent publication is subject to a new consent.

A new concept introduced into the revised policy seeks toprotect the dignity of the patient, both in the location wherethe photography is carried out and in the nature of theimages. It also states clearly that all medical records must bestored on Trust’s premises (i.e., they may not be kept at aclinician’s home).

Conclusion

The Data Protection Act and the recently published GoodPractice in Consent Implementation Guide make clearTrusts’ responsibilities to protect patients by implementinga proper policy of informed consent including photographicand video recording of patients. This paper has reviewedsome of the key landmarks in the history of consent tovisual recording of patients and explained the significanceof the requirements of the recently published guide. Trusts

can adapt the forms in the Model Policy to suit the specificneeds of photography, and the Addenbrooke’s NHS Trustconsent form is shown as a model.

The Good Practice in Consent Implementation Guide isavailable free of charge from Department of HealthPublications, PO Box 77, London SE1 6XH, and inelectronic form from the Department of Health website(www.doh.gov.uk/consent). Copies of the Addenbrooke’sNHS Trust Policy on Photography and Video Recordings ofPatients are available from the author.

References

1. Department of Health. Good Practice in Consent Implementa-tion Guide. HMSO: London, 2001.

2. Longmore TA, editor. Medical Photography. London: FocalPress, 1949.

3. Turnbull PM. Ethical considerations. In: Hansell P, ed. AGuide to Medical Photography. MTP Press 1979: 147–52.

4. Health Services Commission. Report W415/83–84 of HC418.London, 1984.

5. Gilson CC, Green P. Confidentiality of illustrative clinicalrecords. J Audiov Media Med 1984; 7: 4–9.

6. Institute of Medical Illustrators. A Code of ResponsiblePractice – Protocols for Ethical Conduct and Legal Com-pliance for Medical Illustrators. London: Institute of MedicalIllustrators, 1998.

7. Slue WE. Unmasking the Lone Ranger. New Engl J Med1989; 321(8): 550–1.

8. Gilson CC. Ethical and legal aspects of illustrative clinicalrecording. Br J Hosp Med 1994; 52(5): 225– 9.

9. Hayden JE. Digital manipulation in scientific images: someethical considerations. J Biocommun 2000; 27(1): 11– 9.

10. Hood CA, Hope T, Dove P. Videos, photographs and patientconsent. Br Med J 1998; 316: 1009–11.

11. Department of Health, op. cit.12. ibid.13. Hood et al., op. cit.14. Gadd E. Personal communication 2002.

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