ABSTRACT
Normative accounts on health information privacy often highlight the importance of regulating data sharing. Yet, little attention has been paid to how health professionals perform and negotiate privacy practices in highly multidisciplinary, technologically-mediated medical work. This paper examines information privacy practices in two HIV outpatient clinics based in two NHS hospitals in London (UK). Methods include 46 semi-structured interviews, primarily with health professionals and technology developers, ethnographic observation and document analysis. Drawing on an empirically informed understanding of privacy as 'articulation work', we focus on the indeterminate nature of information privacy practices and examine the work required to translate privacy, from a normative professional duty to an enacted medical practice. This analysis also highlights the invisibility of privacy practices and their coordinating role in delivering technologically-supported medical care. The paper ends with a discussion of implications for practice and technology design.
- Anderson, J. Ethical issues in relation to HIV care in the UK. Medicine, 37, 7 (2009), 330--332.Google ScholarCross Ref
- Anderson, R., Brown, I., Dowty, T., Inglesant, P., Heath, W. and Sasse, A. Database State. Joseph Rowntree Reform Trust, York, 2009.Google Scholar
- Bardram, J. E. and Bossen, C. Mobility Work: The Spatial Dimension of Collaboration at a Hospital. Computer Supported Cooperative Work (CSCW), 14, 2 (2005), 131--160. Google ScholarDigital Library
- Barkhuus, L. The mismeasurement of privacy: using contextual integrity to reconsider privacy in HCI. Proc. SIGCHI Human Factors in Computing Systems 2012, ACM Press (2012), 367--376. Google ScholarDigital Library
- Belanger, F. and Crossler, R. E. Privacy in the Digital Age: A Review of Information Privacy Research in Information Systems. MIS Quarterly, 35, 4 (2011), 1017--1041. Google ScholarDigital Library
- Berg, M. and Bowker, G. The Multiple Bodies of the Medical Record: Toward a Sociology of an Artifact. The Sociological Quarterly, 38, 3 (1997), 513--537.Google ScholarCross Ref
- Berg, M. The politics of technology: On bringing social theory into technological design. Science, Technology, & Human Values, 23, 4 (1998), 456--490.Google ScholarCross Ref
- Berg, M. Accumulating and Coordinating: Occasions for Information Technologies in Medical Work. Computer Supported Cooperative Work (CSCW), 8, 4 (1999), 373--401. Google ScholarDigital Library
- BHIVA. Standards of care for people living with HIV 2013. British HIV Association, London, 2012.Google Scholar
- Brown, I., Brown, L. and Korff, D. Using NHS Patient Data for Research Without Consent. Law, Innovation and Technology, 2, 2 (2010), 219--258.Google Scholar
- Chen, Y. and Heng, X. Privacy management in dynamic groups: understanding information privacy in medical practices. Proc. CSCW 2013, ACM Press (2013), 541--552. Google ScholarDigital Library
- Dept. of Health. The power of information: Putting all of us in control of the health and care information we need, London, UK, 2012.Google Scholar
- Dept. of Health. Information: to share or not to share? The Information Governance Review. London, UK, 2013.Google Scholar
- Dourish, P. and Anderson, K. Collective Information Practice: Exploring Privacy and Security as Social and Cultural Phenomena. Human-Computer Interaction, 21, 3 (2006), 319--342. Google ScholarDigital Library
- Gavison, R. Privacy and the Limits of Law. In F. D. Schoeman (Ed.), Philosophical Dimensions of Privacy, Cambridge University Press (1984), Cambridge, 364--404.Google ScholarCross Ref
- Gerson, E. M. and Star, S. L. Analyzing due process in the workplace. ACM Transactions on Information Systems (TOIS), 4, 3 (1986), 257--270. Google ScholarDigital Library
- Gutwirth, S. Privacy and the Information Age. Rowman & Littlefield Publishers, Oxford, 2002.Google Scholar
- Health Protection Agency. HIV in the United Kingdom: 2013 Report. Health Protection Services, London, 2013.Google Scholar
- Heath, C. and Luff, P. Collaboration and control Crisis management and multimedia technology in London Underground Line Control Rooms. Computer Supported Cooperative Work (CSCW), 1, 1-2 (1992), 69--94.Google Scholar
- Hope, R. A., Hope, T., Savulescu, J. and Hendrick, J. Medical ethics and law: the core curriculum. Churchill Livingstone/Elsevier, London, 2008.Google Scholar
- Marx, G. T. Murky conceptual waters: The public and the private. Ethics and Information Technology, 3, 3 (2001), 157--169. Google ScholarDigital Library
- Mazanderani, F. and Brown, I. Privacy as a Practice: Exploring the Relational and Spatial Dynamics of HIVRelated Information Seeking. Springer, City, 2011.Google Scholar
- Murphy, A. R., Madhu, C. R. and Heng, X. Privacy practices in collaborative environments: a study of emergency department staff. Proc CSCW and Social Computing 2014, ACM Press (2014), 269--282. Google ScholarDigital Library
- Nissenbaum, H. Privacy in Context: Technology, Policy and the Integrity of Social Life. Stanford University Press, Stanford, California, 2010. Google ScholarDigital Library
- ONC. Connecting Health and Care for the Nation: A Ten Year Vision to Achieve Interoperable Health IT Infrastructure. The Office of the National Coordinator for Health Information Technology, 2014.Google Scholar
- Palen, L. and Dourish, P. Unpacking 'privacy' for a networked world. Proc. SIGCHI Human factors in computing systems, ACM Press (2003), 129--136. Google ScholarDigital Library
- Pavlou, P. A. State of the Information Privacy Literature: Where Are We Now and Where Should We Go? MIS Quarterly, 35, 4 (2011), 977--988. Google ScholarDigital Library
- Rindfleisch, T. C. Privacy, Information Technology, and Health Care. Communications of the ACM, 40, 8 (1997), 93--100. Google ScholarDigital Library
- Schmidt, K. and Bannon, L. Taking CSCW Seriously: Supporting Articulation Work. Computer Supported Cooperative Work, 1(1992), 7--40.Google ScholarCross Ref
- Selwyn, P. A. and Forstein, M. Overcoming the False Dichotomy of Curative vs Palliative Care for Late-Stage HIV/AIDS. JAMA: The Journal of the American Medical Association, 290, 6 (2003), 806--814.Google ScholarCross Ref
- Sheather, J. and Brannan, S. Patient confidentiality in a time of care.data. BMJ, 347(2013).Google Scholar
- Sheller, M. and Urry, J. Mobile Transformations of 'Public' and 'Private' Life. Theory, Culture & Society, 20, 3 (2003), 107--125.Google Scholar
- Siegel, K. and Lekas, H.-M. AIDS as a chronic illness: psychosocial implications. AIDS, 16 (2002), S69-S76.Google ScholarCross Ref
- Smith, H. J., Milberg, S. J. and Burke, S. J. Information Privacy: Measuring Individuals' Concerns about Organizational Practices. MIS Quarterly, 20, 2 (1996), 167--196. Google ScholarDigital Library
- Smith, H. J., Dinev, T. and Xu, H. Information Privacy Research: An Interdisciplinary Review. MIS Quarterly, 35, 4 (2011), 989--1015. Google ScholarDigital Library
- Solove, D. J. Understanding Privacy. Harvard University Press, Cambridge, 2008.Google Scholar
- Star, S. L. and Strauss, A. Layers of silence, arenas of voice: The ecology of visible and invisible work. Computer Supported Cooperative Work, 8, 1-2 (1999), 9--30. Google ScholarDigital Library
- Stewart, K. A. and Segars, A. H. An Empirical Examination of the Concern for Information Privacy Instrument. Information Systems Research, 13, 1 (2002), 36--49. Google ScholarDigital Library
- Strauss, A. L., Fagerhaugh, S., Suczek, B. and Wiener, C. Social Organization of Medical Work. Transaction Publishers, New Brunswick, 1997.Google Scholar
- Suchman, L. A. Supporting articulation work. In R. Kling (Ed.), Computerization and Controversy: Value Conflicts and Social Choices. Academic Press (1996), London, 407--423. Google ScholarDigital Library
- The Antiretroviral Therapy Cohort Collaboration Life expectancy of individuals on combination antiretroviral therapy in high-income countries: a collaborative analysis of 14 cohort studies. The Lancet, 372, 9635 (2008), 293--299.Google Scholar
- Vikkelsø, S. Subtle redistribution of work, attention and risks: Electronic patient records and organisational consequences. Scandinavian Journal of Information Systems, 17, 1 (2005), 3--30.Google Scholar
- Westin, A. Privacy and freedom. Atheneum, NY, 1967.Google Scholar
- Ziebland, S. and McPherson, A. Making sense of qualitative data analysis: an introduction with illustrations from DIPEx (personal experiences of health and illness). Medical Education, 40, 5 (2006), 405--414.Google ScholarCross Ref
Index Terms
- Privacy as Articulation Work in HIV Health Services
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