World Health Organization 30 May, 2018 WHO Training Manual Ethics in epidemics, emergencies and disasters: Research, surveillance and patient care Learning Objective 3.3 Evaluate the measures required to protect privacy and confidentiality in an emergency L.O. XX Title

Outline Introduction Discussion Case Study Presentation Privacy & Confidentiality Measures to ensure Privacy & Confidentiality Records Summary/Conclusion Suggested time 0-5 (5 min) 6-15 (10 min) 16-20 21-45 (25 min) 46-60 (15 min) 61-85 86-90 Activity Introduction Discussion Reading Team preparation Group discussion Team presentations & discussion Summary and conclusion L.O. XX Title

Introduction Public health emergencies provide an opportunity to conduct activities that involve collecting personal data and/or biological samples from those directly or indirectly affected. Public health threats might be identified early thanks to such activities. Benefits of data collection activities during emergencies thus have the potential to extend to a community as a whole. Collecting personal data about an individual’s health status or specific conditions might pose a threat to that individual, particularly when it comes to stigmatized conditions (i.e. tuberculosis, HIV/AIDS, hepatitis STDs). Two ethical issues related to activities that involve the collection of personal data and/or biological samples during public health emergencies are discussed: privacy and confidentiality. (10 minutes) L.O. XX Title

Your Experience Please share your understanding of the concepts of privacy and confidentiality L.O. XX Title

Case Study Please split into three smaller groups Read the distributed case and associated questions, and prepare for the discussion. (20 minutes) Each group presents their responses to the rest of the trainees. (15 minutes) L.O. XX Title

Case Study (1) A public health emergency is taking place in a remote region of a given country. This region is home to an indigenous tribe who has had disputes with neighbouring tribes over the use of water sources, on which their cattle are heavily dependent. As part of its relief intervention, an international NGO decides to conduct a survey to assess the impact of the emergency in various villages to help better target resource deployment. To do so, the NGO recruits some of the more educated members of the local community and trains them to interview respondents and fill the associated survey questionnaires. L.O. XX Title

Case Study (2) The recently trained survey teams start collecting data from randomly selected villages in the affected region to identify the needs affected by the emergency. As one of the teams is collecting data from one of the affected villages, the members are stopped by that village’s leader because one of them is not from the same tribe. The village leader accuses the individual of being biased and of collecting data that will help her tribe get additional aid from the NGO. The leader asks the team to show him the filled questionnaires so that he might check the identity of those who contributed to the survey and to make sure that they are the neediest families in the village. He also asks the team to have his assistant attend all the interviews with the selected households. Otherwise, he threatens to not let the team continue collecting data in the village. L.O. XX Title

Case Questions Do you think that the team should comply with the requests of the village leader? Justify your choice based on ethical principles. Describe how privacy and confidentiality would be breached if the team did comply with the leader’s requests. Suggest two or three practical steps that should have been taken by the NGO and the survey team before, during and after the survey to protect the privacy of the survey participants and the confidentiality of the collected data. L.O. XX Title

Privacy & Confidentiality Privacy is about the right or expectation not to be interfered with, to be free from surveillance, or, more generally, a moral right to be left alone. In practical terms, privacy is for instance concerned with the setting within which the person’s health-related information is acquired. Confidentiality is the principle that ensures that identifiable information is kept out of reach of others. All identifiable information about individuals, whether recorded (written, computerized, visual, audio) or simply held in the memory of health professionals, is subject to the duty of confidentiality. L.O. XX Title

Privacy & Confidentiality In more practical terms, privacy is concerned with the circumstances under which a person’s health-related information is collected (e.g. interviewing someone to fill a questionnaire), while confidentiality is concerned with the collected information itself (e.g. the filled questionnaires). Hence, the duty of confidentiality includes all identifiable health-related personal information, whether written, computerised, visual, audio, or simply memorised by health professionals. L.O. XX Title

Moral duty to respect privacy and confidentiality Beneficence and non-maleficence Respect for autonomy Trustworthiness

General Measures to respect Privacy and Confidentiality Avoid collecting unnecessary identifiable information. Use coding to refer to respondents. Limit access to data based on a clear understanding of roles and information needed to complete an assignment. Do not discuss an individual’s personal data with unauthorized personnel. Be explicit about the circumstances under which identifiers might need to be disclosed (e.g.: court order). Set policies that regulate access to medical information and how any breach to confidentiality is managed. L.O. XX Title

General Measures to respect Privacy and Confidentiality Do not collect information not related to the public health activity - wastes resources (e.g.: practitioners’ time), while adding a burden regarding confidentiality and privacy protection. Do not inappropriately access records or facilitate access. Lock doors of offices. Ask about the identity of visitors (unknown individuals) near record storages. Advise senior personnel if anything suspicious or worrying is noted. Whenever possible, separate clinical details from demographic data.

Hand-written records Hold in secure storage. Track if moved or transferred, for instance by adding a note of their current location within the filing system. Return to the filing system as soon as possible after use. Store and close when not in use so that the content is not easily accessed by others. Be clear who is responsible for locking the file cabinet (or equivalent).

Electronic records Always correctly log out of applications and computers when you have completed your work. Do not leave a terminal unattended and logged in. Do not share passwords or electronic cards with others. Regularly change all of your passwords. Always clear the screen of confidential information when others are present. Seek to encrypt data where feasible. Do not share personal information over email if the communication is not encrypted.

Summary Public health activities undertaken during public health emergencies should be guided by ethical standards that are relevant to the context of the emergency. Two main ethical standards are the duty to respect privacy and to ensure confidentiality. The urgency of the situation should not override the affected people’s claim to privacy and confidentiality. Careful measures must be followed during public health emergencies to protect the process of data collection and the data once collected. Ideally, the importance of privacy and confidentiality should be reflected in the operating procedures of institutions conducting surveillance and associated data collection activities during public health emergencies. L.O. XX Title

Sources Armstrong, H., Ashton, C., & Thomas, R. 2007, Data Protection and Sharing - Guidance for Emergency Planners and Responders. London: Crown. https://www.gov.uk/government/uploads/system/uploads/attachment_d ata/file/60970/dataprotection.pdf Emanuel, E.J., Wendler, D., & Grady, C. 2000. What Makes Clinical Research Ethical? JAMA: The Journal of the American Medical Association, 283, (20) 2701-2711 available from: http://jama.ama- assn.org/cgi/content/abstract/283/20/2701 Mill, J.S. 1859. On Liberty London, GBR, Electric Book Company. L.O. XX Title

Chapter author Acknowledgements Hussein, Ghaiath, School of Health and Population Science, University of Birmingham, Birmingham, United Kingdom L.O. XX Title