- Email: [email protected]
Ethical issues in using social media for health and health care research
Health Policy 110 (2013) 298–301
Contents lists available at SciVerse ScienceDirect
Health Policy journal homepage: www.elsevier.com/locate/healthpol
Commentary
Ethical issues in using social media for health and health care research Rebecca McKee Institute for Social Change, University of Manchester, 2.11 Humanities, Bridgeford Street, Manchester M13 9PL, United Kingdom
a r t i c l e Keywords: Social media Ethics
i n f o
a b s t r a c t The dramatic growth of social media in recent years has not gone unnoticed in the health sector. Media such as Facebook and Twitter are increasingly being used to disseminate information among health professionals and patients but, more recently, are being seen as a source of data for surveillance and research, for example by tracking public concerns or capturing discourses taking place outside traditional media outlets. This raises ethical issues, in particular the extent to which postings are considered public or private and the right to anonymity of those posting on social media. These issues are not clear cut as social media, by their nature, blur the boundary between public and private. There is a need for further research on the beliefs and expectations of those using social media in relation to how their material might be used in research. In contrast, there are areas where the ethical issues are more clear cut, such as when individuals are active participants in research, where traditional considerations apply. © 2013 Elsevier Ireland Ltd. All rights reserved.
1. Introduction Health professionals are making increasing use of social media [1]. Uses include dissemination of health promotion messages [2], medical education [3–5], and dissemination of information at conferences [6,7]. So are patients, acting as sources of mutual support for others with similar ailments [8], although, in some cases, such as epilepsy, the role of Twitter is negative, promulgating stigmatisation of those affected. There are also concerns that some social media sites disseminate information that lacks an evidence base or contradicts established guidelines [9]. Given these increasing roles for social media, health researchers are also using it as a source of information, exemplified by the paper on the role of Twitter in the
DOI of the original article:http://dx.doi.org/10.1016/j.healthpol.2013. 02.005. E-mail address: [email protected] 0168-8510/$ – see front matter © 2013 Elsevier Ireland Ltd. All rights reserved. http://dx.doi.org/10.1016/j.healthpol.2013.02.006
debate on controversial health care reforms in England in this volume [10]. The term “infodemiology” has been coined to describe the surveillance of social media during outbreaks to identify and respond to public concerns [11]. Social media can capture emerging disease trends before official data are available [12,13]. Advances in data linkage, in which social media messages are combined with information on the location of the originator and the characteristics of the environment where they are located offer many additional possibilities [14]. The enormous potential has been revealed by disclosures about a product being manufactured by the defence contractor Raytheon, which exploits the time/date and geographical data embedded in messages and photographs posted on social networking sites to build up detailed pictures of individual’s daily activities [15]. Less controversially, it has also been suggested that comments on Twitter could be used to monitor the quality of healthcare providers [16]. There is a growing body of research in how to undertake research with media such as Twitter, both in terms of its
R. McKee / Health Policy 110 (2013) 298–301
content, for example to filter out the information that is wanted from the large volume of extraneous data [17], and to evaluate processes, such as the scale and direction of communication [18]. 2. Ethical challenges The nature of social media means that researchers can now “lurk” in wait for what are, in essence, ready-made data sets [19]. However, the speed with which these new sources of data have emerged, as well as the increasingly imaginative ways that researchers are using them, risked running ahead of the development of an appropriate ethical framework for their use. Ethicists have recognised that they face a challenge in determining how to transfer traditional deontological principles into the world of social media, addressing the duties and obligations of the researcher, as well as how to deal with concepts such as utilitarianism, feminism, and communitarianism [20]. As research on material published on the internet involves no direct contact between the subject and the researcher. It avoids one of the problems facing much qualitative research, namely that of interviewer bias, whereby what is said is influenced by the researcher. However, the absence of such contact creates other problems, in particular those relating to informed consent and protection of the subject. This commentary considers two of the major issues in the ethics of social media research; the difference between public and private space and the right to anonymity. Now that people routinely share detailed information on all aspects of their lives, including embarrassing anecdotes and even incriminating photographs on social media, there are questions as to what online privacy actually means. One approach is to apply the ethic of reciprocity, or Golden Rule, whereby the researcher asks how they would feel if the roles were reversed [21]. While the researcher might post information on his or her public profiles to be shared by friends or peers, this does not mean that they have consented for this information to be collated, analysed and published, in effect turning them into research subjects [22]. On the other hand, they may use their website to disseminate their work, in which case they will wish others to cite it. A key consideration is whether information is considered as public or private. If public, then it is a legitimate source of research data, in the same way that a professional register [23] or a list of those receiving honours [24] may be used to examine certain characteristics, such as gender or country of qualification, of those included [25]. Yet, information on other characteristics, such as that obtained from the same subjects’ tax returns, would be viewed as private in many (although not all) countries. This is a much harder distinction to make with online information, with some platforms having features of a public event (such as a rally or football match) and others like a private event (personal conversations). These dichotomised distinction are not very helpful when researching on the internet as the divisions are often indistinct and many interactions lie somewhere in between [22]. Although some interactions will more clearly be at one end of the spectrum, for
299
example in terms of the number of participators or explicit terms and conditions of use, this is not often the case. These challenges have caused a revisiting of privacy norms associated with social media, where subjects’ expectations are viewed as different from those in respect of communications off line or using email [26]. Specifically, there has been a rejection of the “anything goes” approach in social media research and acceptance that there are certain expectations of a degree of privacy by those using such media [27]. The challenge then is to operationalise this principle. How do people’s expectations of privacy change depending on the type of media they are using and what are the consequences for researchers’ ethical obligations [28]? This discussion recognises that the concept of privacy is inherently complicated and there is a need to understand how individuals will respond to violations in different contexts [29]. A related issue is that of anonymity. Anonymity is a fundamental right of subjects of research. It underpins the potentially fragile trust between the subject and the researcher and is integral to consent and provision of information as well as being a manifestation of the respect in which the researcher holds the subject in front of the computer screen. The use of online material as data intensifies the challenges that exist in traditional settings. Thus, a quotation from an interview need not identify the subject but, if from a Tweet, it can be traced back to the subject in seconds using Google [22]. Moreover, even when someone posts a message anonymously, it is relatively easy for a determined individual to trace that person through information such as their IP address [30]. This creates many additional ethical considerations for the researcher [28,31]. 3. Potential responses There are a number of measures that can be taken to address these concerns. One is to avoid quoting directly from a source that is publically available but rather to paraphrase it [22], although, as this interferes with the integrity of the data it should be noted that this has been done and it should be recognised that this could introduce bias. Where it is necessary to use direct quotes or to cite names or pseudonyms, Lawson argues that informed consent is necessary [32]. However, this seems somewhat simplistic. First, in many cases, such as the Tweets reproduced elsewhere in this volume, it is apparent that the initiators expected, and in many cases, wished them to be quoted. In essence, they were speaking publicly to advocate a particular position. Second, this fails to address the issues that arise when researching activities that are illegal, immoral, or politically controversial. For example, is it necessary, or even appropriate, for a researcher examining racism to obtain consent from those posting extremist comments? There are, however, less contentious matters. Thus, when individuals participate anonymously in experimental studies, such as those in psychology, but where the IP address is collected, this can reveal the identity of the subject. It seems evident that this should be deleted before the information is published [33], something that will be of increasing importance given ongoing campaigns for publication of clinical trial data. This is a real concern, as seen
300
R. McKee / Health Policy 110 (2013) 298–301
in a 2008 study in which information collected from university students via Facebook was released as a dataset for research. The study had ethical approval and steps were taken to ensure anonymity. However the college was easily identified, making it possible to trace individuals. Even when such data are anonymised, it can be relatively easy to combine variables in ways that identify individuals. Thus, Zimmer [34] showed that the dataset in question could be traced to Harvard University because of the pattern of majors that were being studied; moreover there were some examples of nationalities with only one student, who could thus be traced rapidly. This problem is familiar to those compiling census data, who have created mechanisms to suppress cells containing only a few individuals with specific characteristics [35]. The same principles should apply when making datasets available from social media research. This needs to be recognised by both researchers and ethics committees. 4. Conclusion Despite the public nature of social media, concerns about privacy and anonymity are similar to those arising in traditional qualitative research. However, the pitfalls may be less obvious and thus much easier to fall into unintentionally. The debate between private and public space may only be able to be answered by the subjects themselves as they are the authors of their own words. This is an area that clearly needs much more research and it cannot be assumed that those who are willing to place so much of their private lives on the internet will have the same concerns as previous generations who might guard their privacy much more jealously. The nature of new media itself blurs the boundary between public and private. Should what is posted be considered the equivalent of a personal diary or a newspaper? In some cases the answer may be obvious but often it will not be. Where individuals are active participants in research, as opposed to passive providers of data, the responsibility of the researcher is clearer. In particular, the risks of unintentional disclosure of identity, as described above, should be recognised. The changing nature of technology, as well as the relatively recent use of social media for research, means that ethical considerations will have to be reviewed regularly. However, while there is a need for agreed ethical principles, their application must take account of the contexts in which they are to be applied. This will not be straightforward. References [1] Thackeray R, Neiger BL, Smith AK, Van Wagenen SB. Adoption and use of social media among public health departments. BMC Public Health 2012;12:242. [2] Neiger BL, Thackeray R, Van Wagenen SA, Hanson CL, West JH, Barnes MD, et al. Use of social media in health promotion: purposes, key performance indicators, and evaluation metrics. Health Promotion Practice 2012;13:159–64. [3] Forgie SE, Duff JP, Ross S. Twelve tips for using Twitter as a learning tool in medical education. Medical Teacher 2013;35: 8–14.
[4] George DR, Dellasega C. Use of social media in graduate-level medical humanities education: two pilot studies from Penn State College of Medicine. Medical Teacher 2011;33: e429–34. [5] Bahner DP, Adkins E, Patel N, Donley C, Nagel R, Kman NE. How we use social media to supplement a novel curriculum in medical education. Medical Teacher 2012;34:439–44. [6] McKendrick DR, Cumming GP, Lee AJ. Increased use of Twitter at a medical conference: a report and a review of the educational opportunities. Journal of Medical Internet Research 2012;14: e176. [7] Desai T, Shariff A, Kats M, Fang X, Christiano C, Ferris M. Tweeting the meeting: an in-depth analysis of Twitter activity at Kidney Week 2011. PLoS One 2012;7:e40253. [8] Sugawara Y, Narimatsu H, Hozawa A, Shao L, Otani K, Fukao A. Cancer patients on Twitter: a novel patient community on social media. BMC Research Notes 2012;5:699. [9] Prochaska JJ, Pechmann C, Kim R, Leonhardt JM. Twitter = quitter? An analysis of Twitter quit smoking social networks. Tobacco Control 2012;21:447–9. [10] King D, Ramirez-Cano D, Greaves F, Vlaev I, Beales S, Darzi A. Twitter and the health reforms in the English National Health Service. Health Policy, http://dx.doi.org/10.1016/j.healthpol.2013.02.005, this issue. [11] Chew C, Eysenbach G. Pandemics in the age of Twitter: content analysis of Tweets during the 2009 H1N1 outbreak. PLoS One 2010;5:e14118. [12] Chunara R, Andrews JR, Brownstein JS. Social and news media enable estimation of epidemiological patterns early in the 2010 Haitian cholera outbreak. American Journal of Tropical Medicine and Hygiene 2012;86:39–45. [13] Collier N, Son NT, Nguyen NM. OMG U got flu? Analysis of shared health messages for bio-surveillance. Journal of Biomedical Semantics 2011;2(Suppl. 5):S9. [14] Kamel Boulos MN, Resch B, Crowley DN, Breslin JG, Sohn G, Burtner R, et al. Crowdsourcing, citizen sensing and sensor web technologies for public and environmental health surveillance and crisis management: trends, OGC standards and application examples. International Journal of Health Geography 2011;10:67. [15] Gallagher R. Software that tracks people on social media created by defence firm; 2013. http://wwwguardiancouk/world/ [accessed 2013/feb/10/software-tracks-social-media-defence 11.02.13]. [16] Greaves F, Ramirez-Cano D, Millett C, Darzi A, Donaldson L. Harnessing the cloud of patient experience: using social media to detect poor quality healthcare. BMJ Quality and Safety 2013, doi:bmjqs-2012001527. [17] Bosley JC, Zhao NW, Hill S, Shofer FS, Asch DA, Becker LB, et al. Decoding twitter: surveillance and trends for cardiac arrest and resuscitation communication. Resuscitation 2012, http://dx.doi.org/10.1016/j.resuscitation.2012.10.017. [18] Neiger BL, Thackeray R, Burton SH, Giraud-Carrier CG, Fagen MC. Evaluating social media’s capacity to develop engaged audiences in health promotion settings: use of twitter metrics as a case study. Health Promotion Practice 2012, http://dx.doi.org/10.1177/1524839912469378. [19] Boyd D, Ellison N. Social network sites: definition, history, and scholarship. Journal of Computer-Mediated Communication 2008;13:210–30. [20] Ess C. Internet research ethics. In: Joinson A, IcKenna K, Postmes T, Reips U-D, editors. Oxford handbook of internet psychology. New York: Oxford University Press; 2007. [21] Honderich T, editor. The Oxford companion to philosophy. Oxford: Oxford University Press; 1995. [22] Eysenbach G, Till J. Information in practice. Ethical issues in qualitative research on internet communities. British Medical Journal 2001;323:1103–5. [23] Mitchell AJ, Crowfoot D, Leaver J, Hughes S. Does the academic performance of psychiatrists influence success in the NHS Clinical Excellence Award Scheme? JRSM Short Report 2011;2: 21. [24] Islam S, Cole JL, Taylor CJ. Doctors recognized by the British honours systems: a retrospective analysis of the last decade. Journal of the Royal Society of Medicine 2011;104:521–4. [25] Humphrey C, Hickman S, Gulliford MC. Place of medical qualification and outcomes of UK General Medical Council “fitness to practise” process: cohort study. BMJ 2011;342:d1817. [26] Smith JH, Dinev T, Xu H. Information privacy research: an interdisciplinary review. MIS Quarterly 2011;35:989–1015. [27] Nissenbaum H. Privacy as contextual integrity. Washington Law Review 2004;79:119–58.
R. McKee / Health Policy 110 (2013) 298–301 [28] Martin K. Information technology and privacy: conceptual muddles or privacy vacuums? Ethics and Information Technology 2012;14:267–84. [29] Malhotra NK, Kim SS, Agarwal J. Internet users’ information privacy concerns (IUIPC): the construct, the scale, and a causal model. Information Systems Research 2004;15:336–55. [30] Perlroth N. Trying to keep your e-mails secret when the C.I.A. chief couldn’t. New York Times 2012;November. http://www.nytimes. com/2012/11/17/technology/trying-to-keep-your-e-mails-secretwhen-the-cia-chief-couldnt.html?pagewanted=all& r=0 [31] Hui K, Teo H, Sang-Yong TL. The value of privacy assurance: an exploratory field experiment. MIS Quarterly 2007;31: 19–33.
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[32] Lawson D. Blurring the boundaries: ethical considerations for online research using synchronous CMC forums. In: Buchanan EA, editor. Readings in virtual research ethics: issues and controversies. London: Information Science Publishing; 2004. [33] Nosek B, Banaji MR, Greenwald AG. E-research: ethics, security, design, and control in psychological research on the internet. Journal of Social Issues 2002;58:161–76. [34] Zimmer M. “But the data is already public”: on the ethics of research in Facebook. Ethics and Information Technology 2010;12: 313–25. [35] Sullivan CM. An overview of disclosure principles. Statistical research division research report series no. RR-92/09. Washington, DC: Bureau of the Census; 1992.
Contents lists available at SciVerse ScienceDirect
Health Policy journal homepage: www.elsevier.com/locate/healthpol
Commentary
Ethical issues in using social media for health and health care research Rebecca McKee Institute for Social Change, University of Manchester, 2.11 Humanities, Bridgeford Street, Manchester M13 9PL, United Kingdom
a r t i c l e Keywords: Social media Ethics
i n f o
a b s t r a c t The dramatic growth of social media in recent years has not gone unnoticed in the health sector. Media such as Facebook and Twitter are increasingly being used to disseminate information among health professionals and patients but, more recently, are being seen as a source of data for surveillance and research, for example by tracking public concerns or capturing discourses taking place outside traditional media outlets. This raises ethical issues, in particular the extent to which postings are considered public or private and the right to anonymity of those posting on social media. These issues are not clear cut as social media, by their nature, blur the boundary between public and private. There is a need for further research on the beliefs and expectations of those using social media in relation to how their material might be used in research. In contrast, there are areas where the ethical issues are more clear cut, such as when individuals are active participants in research, where traditional considerations apply. © 2013 Elsevier Ireland Ltd. All rights reserved.
1. Introduction Health professionals are making increasing use of social media [1]. Uses include dissemination of health promotion messages [2], medical education [3–5], and dissemination of information at conferences [6,7]. So are patients, acting as sources of mutual support for others with similar ailments [8], although, in some cases, such as epilepsy, the role of Twitter is negative, promulgating stigmatisation of those affected. There are also concerns that some social media sites disseminate information that lacks an evidence base or contradicts established guidelines [9]. Given these increasing roles for social media, health researchers are also using it as a source of information, exemplified by the paper on the role of Twitter in the
DOI of the original article:http://dx.doi.org/10.1016/j.healthpol.2013. 02.005. E-mail address: [email protected] 0168-8510/$ – see front matter © 2013 Elsevier Ireland Ltd. All rights reserved. http://dx.doi.org/10.1016/j.healthpol.2013.02.006
debate on controversial health care reforms in England in this volume [10]. The term “infodemiology” has been coined to describe the surveillance of social media during outbreaks to identify and respond to public concerns [11]. Social media can capture emerging disease trends before official data are available [12,13]. Advances in data linkage, in which social media messages are combined with information on the location of the originator and the characteristics of the environment where they are located offer many additional possibilities [14]. The enormous potential has been revealed by disclosures about a product being manufactured by the defence contractor Raytheon, which exploits the time/date and geographical data embedded in messages and photographs posted on social networking sites to build up detailed pictures of individual’s daily activities [15]. Less controversially, it has also been suggested that comments on Twitter could be used to monitor the quality of healthcare providers [16]. There is a growing body of research in how to undertake research with media such as Twitter, both in terms of its
R. McKee / Health Policy 110 (2013) 298–301
content, for example to filter out the information that is wanted from the large volume of extraneous data [17], and to evaluate processes, such as the scale and direction of communication [18]. 2. Ethical challenges The nature of social media means that researchers can now “lurk” in wait for what are, in essence, ready-made data sets [19]. However, the speed with which these new sources of data have emerged, as well as the increasingly imaginative ways that researchers are using them, risked running ahead of the development of an appropriate ethical framework for their use. Ethicists have recognised that they face a challenge in determining how to transfer traditional deontological principles into the world of social media, addressing the duties and obligations of the researcher, as well as how to deal with concepts such as utilitarianism, feminism, and communitarianism [20]. As research on material published on the internet involves no direct contact between the subject and the researcher. It avoids one of the problems facing much qualitative research, namely that of interviewer bias, whereby what is said is influenced by the researcher. However, the absence of such contact creates other problems, in particular those relating to informed consent and protection of the subject. This commentary considers two of the major issues in the ethics of social media research; the difference between public and private space and the right to anonymity. Now that people routinely share detailed information on all aspects of their lives, including embarrassing anecdotes and even incriminating photographs on social media, there are questions as to what online privacy actually means. One approach is to apply the ethic of reciprocity, or Golden Rule, whereby the researcher asks how they would feel if the roles were reversed [21]. While the researcher might post information on his or her public profiles to be shared by friends or peers, this does not mean that they have consented for this information to be collated, analysed and published, in effect turning them into research subjects [22]. On the other hand, they may use their website to disseminate their work, in which case they will wish others to cite it. A key consideration is whether information is considered as public or private. If public, then it is a legitimate source of research data, in the same way that a professional register [23] or a list of those receiving honours [24] may be used to examine certain characteristics, such as gender or country of qualification, of those included [25]. Yet, information on other characteristics, such as that obtained from the same subjects’ tax returns, would be viewed as private in many (although not all) countries. This is a much harder distinction to make with online information, with some platforms having features of a public event (such as a rally or football match) and others like a private event (personal conversations). These dichotomised distinction are not very helpful when researching on the internet as the divisions are often indistinct and many interactions lie somewhere in between [22]. Although some interactions will more clearly be at one end of the spectrum, for
299
example in terms of the number of participators or explicit terms and conditions of use, this is not often the case. These challenges have caused a revisiting of privacy norms associated with social media, where subjects’ expectations are viewed as different from those in respect of communications off line or using email [26]. Specifically, there has been a rejection of the “anything goes” approach in social media research and acceptance that there are certain expectations of a degree of privacy by those using such media [27]. The challenge then is to operationalise this principle. How do people’s expectations of privacy change depending on the type of media they are using and what are the consequences for researchers’ ethical obligations [28]? This discussion recognises that the concept of privacy is inherently complicated and there is a need to understand how individuals will respond to violations in different contexts [29]. A related issue is that of anonymity. Anonymity is a fundamental right of subjects of research. It underpins the potentially fragile trust between the subject and the researcher and is integral to consent and provision of information as well as being a manifestation of the respect in which the researcher holds the subject in front of the computer screen. The use of online material as data intensifies the challenges that exist in traditional settings. Thus, a quotation from an interview need not identify the subject but, if from a Tweet, it can be traced back to the subject in seconds using Google [22]. Moreover, even when someone posts a message anonymously, it is relatively easy for a determined individual to trace that person through information such as their IP address [30]. This creates many additional ethical considerations for the researcher [28,31]. 3. Potential responses There are a number of measures that can be taken to address these concerns. One is to avoid quoting directly from a source that is publically available but rather to paraphrase it [22], although, as this interferes with the integrity of the data it should be noted that this has been done and it should be recognised that this could introduce bias. Where it is necessary to use direct quotes or to cite names or pseudonyms, Lawson argues that informed consent is necessary [32]. However, this seems somewhat simplistic. First, in many cases, such as the Tweets reproduced elsewhere in this volume, it is apparent that the initiators expected, and in many cases, wished them to be quoted. In essence, they were speaking publicly to advocate a particular position. Second, this fails to address the issues that arise when researching activities that are illegal, immoral, or politically controversial. For example, is it necessary, or even appropriate, for a researcher examining racism to obtain consent from those posting extremist comments? There are, however, less contentious matters. Thus, when individuals participate anonymously in experimental studies, such as those in psychology, but where the IP address is collected, this can reveal the identity of the subject. It seems evident that this should be deleted before the information is published [33], something that will be of increasing importance given ongoing campaigns for publication of clinical trial data. This is a real concern, as seen
300
R. McKee / Health Policy 110 (2013) 298–301
in a 2008 study in which information collected from university students via Facebook was released as a dataset for research. The study had ethical approval and steps were taken to ensure anonymity. However the college was easily identified, making it possible to trace individuals. Even when such data are anonymised, it can be relatively easy to combine variables in ways that identify individuals. Thus, Zimmer [34] showed that the dataset in question could be traced to Harvard University because of the pattern of majors that were being studied; moreover there were some examples of nationalities with only one student, who could thus be traced rapidly. This problem is familiar to those compiling census data, who have created mechanisms to suppress cells containing only a few individuals with specific characteristics [35]. The same principles should apply when making datasets available from social media research. This needs to be recognised by both researchers and ethics committees. 4. Conclusion Despite the public nature of social media, concerns about privacy and anonymity are similar to those arising in traditional qualitative research. However, the pitfalls may be less obvious and thus much easier to fall into unintentionally. The debate between private and public space may only be able to be answered by the subjects themselves as they are the authors of their own words. This is an area that clearly needs much more research and it cannot be assumed that those who are willing to place so much of their private lives on the internet will have the same concerns as previous generations who might guard their privacy much more jealously. The nature of new media itself blurs the boundary between public and private. Should what is posted be considered the equivalent of a personal diary or a newspaper? In some cases the answer may be obvious but often it will not be. Where individuals are active participants in research, as opposed to passive providers of data, the responsibility of the researcher is clearer. In particular, the risks of unintentional disclosure of identity, as described above, should be recognised. The changing nature of technology, as well as the relatively recent use of social media for research, means that ethical considerations will have to be reviewed regularly. However, while there is a need for agreed ethical principles, their application must take account of the contexts in which they are to be applied. This will not be straightforward. References [1] Thackeray R, Neiger BL, Smith AK, Van Wagenen SB. Adoption and use of social media among public health departments. BMC Public Health 2012;12:242. [2] Neiger BL, Thackeray R, Van Wagenen SA, Hanson CL, West JH, Barnes MD, et al. Use of social media in health promotion: purposes, key performance indicators, and evaluation metrics. Health Promotion Practice 2012;13:159–64. [3] Forgie SE, Duff JP, Ross S. Twelve tips for using Twitter as a learning tool in medical education. Medical Teacher 2013;35: 8–14.
[4] George DR, Dellasega C. Use of social media in graduate-level medical humanities education: two pilot studies from Penn State College of Medicine. Medical Teacher 2011;33: e429–34. [5] Bahner DP, Adkins E, Patel N, Donley C, Nagel R, Kman NE. How we use social media to supplement a novel curriculum in medical education. Medical Teacher 2012;34:439–44. [6] McKendrick DR, Cumming GP, Lee AJ. Increased use of Twitter at a medical conference: a report and a review of the educational opportunities. Journal of Medical Internet Research 2012;14: e176. [7] Desai T, Shariff A, Kats M, Fang X, Christiano C, Ferris M. Tweeting the meeting: an in-depth analysis of Twitter activity at Kidney Week 2011. PLoS One 2012;7:e40253. [8] Sugawara Y, Narimatsu H, Hozawa A, Shao L, Otani K, Fukao A. Cancer patients on Twitter: a novel patient community on social media. BMC Research Notes 2012;5:699. [9] Prochaska JJ, Pechmann C, Kim R, Leonhardt JM. Twitter = quitter? An analysis of Twitter quit smoking social networks. Tobacco Control 2012;21:447–9. [10] King D, Ramirez-Cano D, Greaves F, Vlaev I, Beales S, Darzi A. Twitter and the health reforms in the English National Health Service. Health Policy, http://dx.doi.org/10.1016/j.healthpol.2013.02.005, this issue. [11] Chew C, Eysenbach G. Pandemics in the age of Twitter: content analysis of Tweets during the 2009 H1N1 outbreak. PLoS One 2010;5:e14118. [12] Chunara R, Andrews JR, Brownstein JS. Social and news media enable estimation of epidemiological patterns early in the 2010 Haitian cholera outbreak. American Journal of Tropical Medicine and Hygiene 2012;86:39–45. [13] Collier N, Son NT, Nguyen NM. OMG U got flu? Analysis of shared health messages for bio-surveillance. Journal of Biomedical Semantics 2011;2(Suppl. 5):S9. [14] Kamel Boulos MN, Resch B, Crowley DN, Breslin JG, Sohn G, Burtner R, et al. Crowdsourcing, citizen sensing and sensor web technologies for public and environmental health surveillance and crisis management: trends, OGC standards and application examples. International Journal of Health Geography 2011;10:67. [15] Gallagher R. Software that tracks people on social media created by defence firm; 2013. http://wwwguardiancouk/world/ [accessed 2013/feb/10/software-tracks-social-media-defence 11.02.13]. [16] Greaves F, Ramirez-Cano D, Millett C, Darzi A, Donaldson L. Harnessing the cloud of patient experience: using social media to detect poor quality healthcare. BMJ Quality and Safety 2013, doi:bmjqs-2012001527. [17] Bosley JC, Zhao NW, Hill S, Shofer FS, Asch DA, Becker LB, et al. Decoding twitter: surveillance and trends for cardiac arrest and resuscitation communication. Resuscitation 2012, http://dx.doi.org/10.1016/j.resuscitation.2012.10.017. [18] Neiger BL, Thackeray R, Burton SH, Giraud-Carrier CG, Fagen MC. Evaluating social media’s capacity to develop engaged audiences in health promotion settings: use of twitter metrics as a case study. Health Promotion Practice 2012, http://dx.doi.org/10.1177/1524839912469378. [19] Boyd D, Ellison N. Social network sites: definition, history, and scholarship. Journal of Computer-Mediated Communication 2008;13:210–30. [20] Ess C. Internet research ethics. In: Joinson A, IcKenna K, Postmes T, Reips U-D, editors. Oxford handbook of internet psychology. New York: Oxford University Press; 2007. [21] Honderich T, editor. The Oxford companion to philosophy. Oxford: Oxford University Press; 1995. [22] Eysenbach G, Till J. Information in practice. Ethical issues in qualitative research on internet communities. British Medical Journal 2001;323:1103–5. [23] Mitchell AJ, Crowfoot D, Leaver J, Hughes S. Does the academic performance of psychiatrists influence success in the NHS Clinical Excellence Award Scheme? JRSM Short Report 2011;2: 21. [24] Islam S, Cole JL, Taylor CJ. Doctors recognized by the British honours systems: a retrospective analysis of the last decade. Journal of the Royal Society of Medicine 2011;104:521–4. [25] Humphrey C, Hickman S, Gulliford MC. Place of medical qualification and outcomes of UK General Medical Council “fitness to practise” process: cohort study. BMJ 2011;342:d1817. [26] Smith JH, Dinev T, Xu H. Information privacy research: an interdisciplinary review. MIS Quarterly 2011;35:989–1015. [27] Nissenbaum H. Privacy as contextual integrity. Washington Law Review 2004;79:119–58.
R. McKee / Health Policy 110 (2013) 298–301 [28] Martin K. Information technology and privacy: conceptual muddles or privacy vacuums? Ethics and Information Technology 2012;14:267–84. [29] Malhotra NK, Kim SS, Agarwal J. Internet users’ information privacy concerns (IUIPC): the construct, the scale, and a causal model. Information Systems Research 2004;15:336–55. [30] Perlroth N. Trying to keep your e-mails secret when the C.I.A. chief couldn’t. New York Times 2012;November. http://www.nytimes. com/2012/11/17/technology/trying-to-keep-your-e-mails-secretwhen-the-cia-chief-couldnt.html?pagewanted=all& r=0 [31] Hui K, Teo H, Sang-Yong TL. The value of privacy assurance: an exploratory field experiment. MIS Quarterly 2007;31: 19–33.
301
[32] Lawson D. Blurring the boundaries: ethical considerations for online research using synchronous CMC forums. In: Buchanan EA, editor. Readings in virtual research ethics: issues and controversies. London: Information Science Publishing; 2004. [33] Nosek B, Banaji MR, Greenwald AG. E-research: ethics, security, design, and control in psychological research on the internet. Journal of Social Issues 2002;58:161–76. [34] Zimmer M. “But the data is already public”: on the ethics of research in Facebook. Ethics and Information Technology 2010;12: 313–25. [35] Sullivan CM. An overview of disclosure principles. Statistical research division research report series no. RR-92/09. Washington, DC: Bureau of the Census; 1992.