DISCLAIMER: Information extracted or copy and paste by Dr. Muhamad Na’im Bin Ab Razak from various sources for the purpose of guiding the author in publishing the images or patients’ information in this website.
Dear readers, it is an Honor for me to be able to share the cases that I have read, experience, met and manage throughout my medical student time and during my working period. I believe that this very small effort can make a big change in our medical education system. With the advance in technology, knowledge can be obtained from the tips of fingers and medical website is one of the best place to obtain it provided that the website is well manage and the purity of the knowledge is well preserved. However, online publication will face an ethical dilemma especially the breach of patient confidentiality and my website is not an exception to it. While i’m trying very hard to avoid any breach of confidentiality, there could be a small chance where it can happen. However, i will try my best to uphold the integrity of medical profession and at the same time improve the medical education system.
Here i would like to share some text extract from few guidelines regarding the online or journal publication concerning with patient’s confidentiality issue.
Reference 1: “Social Media and the Medical Profession: A Guide to online professionalism for medical practitioners and medical students.” A joint initiative of the Australian Medical Association Council of Doctors-in-Training, the New Zealand Medical Association, Doctors-in-Training Council, the New Zealand Medical Students’ Association and the Australian Medical Students’ Association.
You are working in a rural hospital and make a comment on a social networking site about an adverse outcome for one of your patients. You are careful not to name the patient or the hospital. However, you mentioned the name of the hospital you are working at in a post last week. A cousin of the patient searches the internet for the hospital’s name in order to find its contact phone number. In the search results, the patient’s cousin is presented with your posting mentioning the hospital. The cousin then sees the subsequent posting regarding the adverse outcome involving the patient.
Doctors have an ethical and legal responsibility to maintain their patients’ confidentiality. This still applies when using any form of online tool, regardless of whether the communication is with other doctors, a specific group of people (e.g. ‘friends’ on social networking sites), or the public (e.g. a blog). The anonymity potentially afforded online is no excuse for unprofessional behaviour. Before putting patient information online, think about why you are doing it. You should inform the patient and gain their express consent, and acknowledge that consent has been obtained in any online posts. If you feel it is appropriate to discuss a patient case – for example, to further that patient’s care or the care of future patients who present with a similar condition – care must be taken to ensure that the patient is properly de-identified. Using a pseudonym is not always enough; you might have to change case information or delay the discussion. The accessibility and indexability of online information means that although a single posting on a social networking website may be sufficiently de-identified in its own right, this may be compromised by other postings on the same website, which are just a mouse click away.
In maintaining confidentiality, you must ensure that any patient or situation cannot be identified by the sum of information available online. Breaching confidentiality can result in complaints to your medical registration authority (with potential disciplinary action, including loss of registration), involvement of the Privacy Commissioner, or even legal action (including civil claims for damages). In Australia, Medical Boards have already investigated doctors for patient-identifying information posted on social networking sites.10 11 Moreover, breaching confidentiality erodes the public’s trust in the medical profession, impairing our ability to treat patients effectively.
Reference 2: “Uniform Requirements for Manuscripts Submitted to Biomedical Journals: Ethical Considerations in the Conduct and Reporting of Research: Privacy and Confidentiality Patients and Study Participants”, International Comittee of Medical Journal Editors, http://www.icmje.org/ethical_5privacy.html
Patients have a right to privacy that should not be violated without informed consent. Identifying information, including names, initials, or hospital numbers, should not be published in written descriptions, photographs, or pedigrees unless the information is essential for scientific purposes and the patient (or parent or guardian) gives written informed consent for publication. Informed consent for this purpose requires that an identifiable patient be shown the manuscript to be published. Authors should disclose to these patients whether any potential identifiable material might be available via the Internet as well as in print after publication. Patient consent should be written and archived with the journal, the authors, or both, as dictated by local regulations or laws. Applicable laws vary from locale to locale, and journals should establish their own policies with legal guidance. Since a journal that archives the consent will be aware of patient identity, some journals may decide that patient confidentiality is better guarded by having the author archive the consent and instead providing the journal with a written statement that attests that they have received and archived written patient consent.
Nonessential identifying details should be omitted. Informed consent should be obtained if there is any doubt that anonymity can be maintained. For example, masking the eye region in photographs of patients is inadequate protection of anonymity. If identifying characteristics are altered to protect anonymity, such as in genetic pedigrees, authors should provide assurance, and editors should so note, that such alterations do not distort scientific meaning.
The requirement for informed consent should be included in the journal’s Instructions for Authors. When informed consent has been obtained, it should be indicated in the published article.
Reference 3: Guidance for Doctors Concerning "Confidentiality" by General Medical Council 2009, subsection “Research and other secondary uses”.
40 Research, epidemiology, public health surveillance, health service planning,and education and training are among the important secondary uses made of patient information. Each of these uses can serve important public interests.
41 For many secondary uses, it will be sufficient and practicable to disclose only anonymised or coded information.When identifiable information is needed, or it is not practicable to remove identifiable information, it will often be perfectly practicable to get patients’ express consent.
42 You may disclose identifiable information without consent if it is required by law, if it is approved under section 251 of the NHS Act 2006,15 or if it can be justified in the public interest and it is either:
(a) necessary to use identifiable information, or
(b) not practicable to anonymise or code the information and, in either case, not practicable16 to seek consent (or efforts to seek consent have been unsuccessful).
43 In considering whether it is practicable to seek consent you must take account of:
(a) the age of records and the likely traceability of patients
(b) the number of records, and
(c) the possibility of introducing bias because of a low response rate or because particular groups of patients refuse, or do not respond to, requests to use their information.
44 When considering whether the public interest in disclosures for secondary uses outweighs patients’ and the public interest in keeping the information confidential, you must consider:
(a) the nature of the information to be disclosed
(b) what use will be made of the information
(c) how many people will have access to the information
(d) the confidentiality and security arrangements in place to protect the information from further disclosure
(e) the advice of a Caldicott Guardian or similar expert adviser, who is not directly connected with the use for which disclosure is being considered, and
(f) the potential for distress or harm to patients.
45 When considering applications for support under section 251 of the NHS Act 2006 in England andWales, the National Information Governance Board considers:
(a) the feasibility of doing the research or other activity with patients’ consent or by using anonymised or coded information, and
(b) whether the use of identifiable information would benefit patients or the public sufficiently to outweigh patients’ right to privacy.
46 The Privacy Advisory Committee in Northern Ireland can advise on some of the same considerations; but it has no statutory powers and so cannot give lawful authority to disclosures of identifiable information without consent. In the event of a complaint or challenge, its advice on best practice might play an important part in any assessment of the propriety of a disclosure.
47 The Privacy Advisory Committee in Scotland performs a different role, and doctors there should seek the advice of Caldicott Guardians, defence organisations or professional bodies if they are unsure about whether disclosures of identifiable information for secondary uses can be justified in the public interest.
48 It might not be practicable for the healthcare team, or those who usually support them, to anonymise or code information or to seek patients’ express consent:
(a) for the disclosure of identifiable information for important secondary uses, or
(b) so that suitable patients can be recruited to clinical trials or other approved research projects.
49 If that is the case:
(a) identifiable information may be sent to a ‘safe haven’, where they exist and have the capabilities and are otherwise suitable to process the information (including anonymising or coding it) and to manage the disclosure of information for secondary uses or, if that is not practicable
(b) the task of anonymising or coding the information or seeking patients’ consent to disclosure can be delegated to someone incorporated into the healthcare team on a temporary basis and bound by legal and contractual obligations of confidentiality.
50 You should only disclose identifiable information for research if that research is approved by a Research Ethics Committee. You should alert Research Ethics Committees to disclosures of identifiable information without consent when applying for approval for research projects.
Reference 4: "Vancouver Group Guidelines before 1995" Extract from Patient's consent for Publication of Information about them by Richard Smith, The Cope Report 1998.
Detailed descriptions of individual patients, whether of their whole bodies or of body sections (including physiognomies), are sometimes central documentation in medical journal articles. Use of such materials may lead to disclosure of the patient's identity, sometimes even indirectly by a combination of seemingly innocent information.
Patients and relatives have a right to anonymity in published clinical documentation. Details that might identify patient should be avoided unless essential for scientific purposes. Masking of the eye region in photographs of patients may be inadequate protection of anonymity.
In publication of identifying information is essential, informed consent should be obtained.
Changing data on patients should not be used as a way of securing anonymity.
Medical journals ought to publish their editorial rules for accepting publication of detailed descriptions of individual patients and photograph. When informed consent has been obtained by authors, this should be clearly stated in the article.
Reference 5: "Revised Vancouver Group Guidelines" Extract from Patient's consent for Publication of Information about them by Richard Smith, The Cope Report 1998.
The guidelines is amended in favor of getting consent rather than preserving anonymity
Patients are entitled to privacy and this should not be infringed without informed consent.
Identifying information should not be published in written description, photographs and pedigrees unless the information is essential for scientific purposes and the patient or parent or guardian gives written informed consent for publication. And for this, the intended manuscript must be shown to the patient
Identifying details should be omitted if they are not essential, but patient data should never be altered or falsified in any attempts to anonymize.
If there is any doubt about achieving complete anonymity, informed consent should be obtained, and the requirement for it should be included among the instructions for authors.
When informed consent has been obtained, it should be indicated in the published article.