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Developing a Research Agenda on Ethical Issues Related to Using Social Media in Healthcare

Lessons from the First Dutch Twitter Heart Operation

Published online by Cambridge University Press:  10 June 2015

SAMANTHA A. ADAMS ,
DENNIS VAN VEGHEL  and
LUKAS DEKKER
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Abstract:

The consequences of using publicly available social media applications specifically for healthcare purposes are largely unaddressed in current research. Where they are addressed, the focus is primarily on issues of privacy and data protection. We therefore use a case study of the first live Twitter heart operation in the Netherlands, in combination with recent literature on social media from other academic fields, to identify a wide range of ethical issues related to using social media for health-related purposes. Although this case reflects an innovative approach to public education and patient centeredness, it also illustrates the need for institutions to weigh the various aspects of use and to develop a plan to deal with these on a per case basis. Given the continual development of technologies, researchers may not yet be able to oversee and anticipate all of the potential implications. Further development of a research agenda on this topic, the promotion of guidelines and policies, and the publication of case studies that reveal the granularity of individual situations will therefore help raise awareness and assist physicians and institutions in using social media to support existing care services.

Keywords

social mediaDutch heart operationTwitter heart operationsocial mediahealth-relatedpublic educationinnovation in healthcare
Type
Special Section: Bioethics and Information Technology
Information
Cambridge Quarterly of Healthcare Ethics , Volume 24 , Issue 3 , July 2015 , pp. 293 - 302
Copyright
Copyright © Cambridge University Press 2015 

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References

Notes

1. Scholz, T.Market ideology and the myths of Web 2.0. First Monday 2008;13(3); available at http://firstmonday.org/htbin/cgiwrap/bin/ojs/index.php/fm/article/view/2138/1945 (last accessed 15 Dec 2014).CrossRefGoogle Scholar

2. Adams, SA. Post-panoptic surveillance through healthcare rating sites: Who’s watching whom? Information, Communication and Society 2013;16(2):215–35.CrossRefGoogle Scholar

3. Drexhage, D. Erasmus MC Media Protocol [in Dutch]. Rotterdam: EMC; 2010.Google Scholar

4. UMC St. Radboud Social Media Policy [in Dutch]. Nijmegen: UMC St. Radboud; 2010.

5. Royal Dutch Society of Physicians (KNMG). Doctors and Social Media [in Dutch]. Utrecht: KNMG; 2011.

6. Professional Association for Nurses and Caregivers (V&VN). Social Media Handbook for Nurses and Caregivers [in Dutch]. Utrecht: V&VN; 2012.

7. Jarvis, J. Public Parts. New York: Simon and Schuster; 2011.Google Scholar

8. Williams, SA, Terras, M, Warwick, C. How Twitter is studied in the medical professions: A classification of Twitter papers indexed in PubMed. Med 2.0 2013;2(2):e2.Google ScholarPubMed

9. EurActiv.com. Web 2.0: New Opportunities, New Risks; 2008 Apr 17; available at http://www.euractiv.com/infosociety/web-20-new-opportunities-new-risks/article-171600 (last accessed 15 May 2008).

10. Boyd, d, Golder, S, Lotan, G.Tweet, tweet, retweet: Conversational aspects of retweeting on Twitter. HICSS-43. IEEE 2010 Jan 6; Kauai, HI.Google Scholar

11. Verbeek, PP. Moralizing Technology. Chicago: University of Chicago Press; 2011.CrossRefGoogle Scholar

12. See note 1, Scholz 2008.

13. Dixon, A, Robertson, R, Bal, R. The experience of implementing choice at point of referral: A comparison of the Netherlands and England. Health Economics, Policy and Law 2010;5(3):295–317.CrossRefGoogle ScholarPubMed

14. Harris, R, Wyatt, S, Wathen, N, eds. Reconfiguring Health Consumers: Health Work and the Imperative of Personal Responsibility. Houndmills: Palgrave; 2010.CrossRefGoogle Scholar

15. Oudshoorn N. Telecare Technologies and the Transformation of Healthcare. Houndmills: Palgrave; 2011.

16. Eysenbach, G. What is e-health? Journal of Medical Internet Research 2001;3(2):e20.CrossRefGoogle ScholarPubMed

17. Bush, H. Time to tweet? Hospitals and Health Networks Magazine 2009; available at http://www.hhnmag.com/hhnmag/jsp/articledisplay.jsp?dcrpath=HHNMAG/Article/data/06JUN2009/0906HHN_FEA_twitter&domain=HHNMAG (last accessed 21 Nov 2013).Google Scholar

18. See note 14, Harris et al. 2010.

19. Millington, B. Wii has never been modern: “Active” video games and the “conduct of conduct.” New Media & Society 2009;11(4):621–40.CrossRefGoogle Scholar

20. Scholtes, P. Zorgbedrijf moet zich profileren [Health institutions must profile themselves]. Eindhovens Dagblad 2012 Jan 28:26.Google Scholar

21. Smeets, J. Letter to the editor. Eindhovens Dagblad 2012 Jan 28:16.Google Scholar

22. Yamout, SZ, Glick, ZA, Lind, DS, Monson, RA, Glick, PL. Using social media to enhance surgeon and patient education and communication. Bulletin of American College of Surgeons 2011;96(7):7–15.Google Scholar

23. Thompson, MA, Younes, A, Miller, RS. Using social media in oncology for education and patient engagement. Oncology 2012;26(9); available at http://www.cancernetwork.com/practice/content/article/10165/2101308# (last accessed 15 Dec 2014).Google ScholarPubMed

24. Rozenblum, R, Bates, DW. Patient-centred healthcare, social media and the internet: The perfect storm? BMJ Quality and Safety 2013;22:183–6.CrossRefGoogle ScholarPubMed

25. Lee, JY, Sundar, SS. To tweet or to retweet? That is the question for health professionals on Twitter. Health Communication 2013;28(5):509–24.CrossRefGoogle ScholarPubMed

26. Seeburger, J, Diegeler, A, Dossche, K, Lange, R, Mohr, FW, Schreiber, C, et al. Live broadcasting in cardiac surgery does not increase the operative risk. European Journal of Cardio-Thoracic Surgery 2011;40:367–71.Google Scholar

27. See note 17, Bush 2009.

28. Laird S. World’s first live-tweeted open-heart surgery is a success [PICS]; 2012; available at http://www.mashable.com/2012/02/23/tweeted-open-heart-surgery/ (last accessed 15 Dec 2014).

29. Fuchs, C.Web 2.0, prosumption, and surveillance. Surveillance & Society 2011;8(3):289–309.Google Scholar

30. Hart K. The rise of alter egos in everybody’s space. Washington Post 2008 2 May:D01; available at http://articles.washingtonpost.com/2008-05-02/news/36855874_1_friend-request-myspace-social-networks (last accessed 15 Dec 2014).

31. Leonard S. The fog of more. New Inquiry Magazine 2012 Apr(3); available at http://thenewinquiry.com/essays/the-fog-of-more (last accessed 15 Dec 2014).

32. Madrigal A. I’m being followed: How Google and 104 other companies are tracking me on the web. The Atlantic Monthly 2012 Feb 29; available at http://www.theatlantic.com/technology/archive/2012/02/im-being-followed-how-google-151-and-104-other-companies-151-are-tracking-me-on-the-web/253758/ (last accessed 15 Dec 2014).

33. Lupton, D. The commodification of patient opinion: The digital patient experience economy in the age of big data. Sociology of Health and Illness 2014. doi:10.1111/1467-9566.12109.CrossRefGoogle ScholarPubMed

34. See note 14, Harris et al. 2010.

35. Adams, SA. Sourcing the crowd for health services improvement: The reflexive patient and “share-your-experience” websites. Social Science and Medicine 2011;72:1069–76.CrossRefGoogle ScholarPubMed

36. See note 13, Dixon et al. 2010.

37. Parry M. Harvard researchers accused of breaching students’ privacy. The Chronicle of Higher Education 2011 July 10; available at http://chronicle.com/article/Harvards-Privacy-Meltdown/128166/ (last accessed 15 Dec 2014).

38. Zimmer, M. “But the data is already public”: On the ethics of research in Facebook. Ethics and Information Technology 2010;12:313–25.CrossRefGoogle Scholar

39. Wyatt, S, Harris, A, Adams, SA, Kelly, SE. Illness online: Self-reported data and questions of trust in medical and social research. Theory, Culture & Society 2013;30(4):128–47.CrossRefGoogle Scholar

40. Harris, A, Wyatt, S, Kelly, S. The gift of spit (and the obligation to return it): How consumers of online genetic testing services participate in research. Information, Communication & Society 2013;16(2):236–57.CrossRefGoogle Scholar

41. Hookaway, N.“Entering the blogosphere”: Some strategies for using blogs in social research. Qualitative Research 2008;8(1):91–113.CrossRefGoogle Scholar

42. See note 38, Zimmer 2010.

43. See note 37, Parry 2011.

44. Karim T. #Adderall: Positionality and ethics in social media research. Back Up Minds [Blog]; 2013; available at http://backupminds.wordpress.com/2013/05/09/adderall-positionality-and-ethics-in-social-media-research/ (last accessed 15 Dec 2014).

45. Montgomery, K, Oliver, AL. Shifts in guidelines for ethical scientific conduct: How public and private organizations create and change norms of research integrity. Social Studies of Science 2009;39(1):137–55.CrossRefGoogle ScholarPubMed

46. McKee, R. Ethical issues in using social media for health and health research. Health Policy 2013;110(2–3):298–301.CrossRefGoogle Scholar

47. See note 17, Bush 2009.

48. See note 28, Laird 2012.

49. deBronkart D. Personal webpage of e-Patient Dave; available at http://www.epatientdave.com/about-dave/ (last accessed 15 Mar 2014).

50. Butcher, L. Profiles in oncology social media: Dave deBronkart, @ePatientDave. Oncology Times 2012;34(20):28–30.Google Scholar

51. See note 23, Thompson et al. 2012.

52. See note 24, Rozenblum, Bates 2013.

53. See note 25, Lee, Sundar 2013

54. Scanfield, D, Scanfield, V, Larson, EL. Dissemination of health information through social networks: Twitter and antibiotics. American Journal of Infection Control 2010;38(3):182–8.CrossRefGoogle Scholar

55. Paul, MJ, Dredze, M. You are what you tweet: Analyzing Twitter for public health. Proceedings of the Fifth International AAAI Conference on Weblogs and Social Media 2011:265–72.Google Scholar

56. Frost, JH, Massagli, MP. Social uses of personal health information within PatientsLikeMe, an online patient community: What can happen when patients have access to one another’s data. Journal of Medical Internet Research 2008;10(3):e15.CrossRefGoogle ScholarPubMed

57. Williams M. Larry Page wants to see your medical records. PC World 2013 16 May; available at http://www.pcworld.com/article/2038857/larry-page-wants-to-see-your-medical-records.html (last accessed 17 Dec 2014).

58. Moubarak, G, Guiot, A, Benhamou, Y, Benhamou, A, Hariri, S. Facebook activity of residents and fellows and its impact on the doctor-patient relationship. Journal of Medical Ethics 2010;37:101–4.CrossRefGoogle ScholarPubMed

59. Meslin, EM, Alpert, SA, Carroll, AE, Odell, JD, Tierney, WM, Schwarz, PH. Giving patients granular control of personal health information: Using an ethics “Points to Consider” to inform informatics systems designers. International Journal of Medical Informatics 2013;82(12):1136–43.CrossRefGoogle ScholarPubMed