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DOI: 10.15265/IY-2015-001
Ethical Issues of Social Media Usage in Healthcare
Summary
Objective: Social media, web and mobile technologies are increasingly used in healthcare and directly support patient-centered care. Patients benefit from disease self-management tools, contact to others, and closer monitoring. Researchers study drug efficiency, or recruit patients for clinical studies via these technologies. However, low communication barriers in social-media, limited privacy and security issues lead to problems from an ethical perspective. This paper summarizes the ethical issues to be considered when social media is exploited in healthcare contexts.
Methods: Starting from our experiences in social-media research, we collected ethical issues for selected social-media use cases in the context of patient-centered care. Results were enriched by collecting and analyzing relevant literature and were discussed and interpreted by members of the IMIA Social Media Working Group.
Results: Most relevant issues in social-media applications are confidence and privacy that need to be carefully preserved. The patient-physician relationship can suffer from the new information gain on both sides since private information of both healthcare provider and consumer may be accessible through the Internet. Physicians need to ensure they keep the borders between private and professional intact. Beyond, preserving patient anonymity when citing Internet content is crucial for research studies.
Conclusion: Exploiting medical social-media in healthcare applications requires a careful reflection of roles and responsibilities. Availability of data and information can be useful in many settings, but the abuse of data needs to be prevented. Preserving privacy and confidentiality of online users is a main issue, as well as providing means for patients or Internet users to express concerns on data usage.
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References
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Correspondence to:
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References
- 1 Eysenbach G. Medicine 2.0: social networking, collaboration, participation, apomediation, and openness. J Med Internet Res 2008; Aug 25 10 (03) e22.
- 2 Rozenblum R, Bates DW. Patient-centred health-care, social media and the internet: the perfect storm?. BMJ Qual Saf 2013
- 3 Eckler P, Worsowicz G, Rayburn J. Social media and health care: an overview. PM R 2010; 2 (11) 1046-50.
- 4 Armstrong N, Powell J. Patient perspectives on health advice posted on internet discussion boards: a qualitative study. Health Expect 2009; 12 (03) 313-20.
- 5 Chretien KC, Kind T. Social media and clinical care: ethical, professional, and social implications. Circulation 2013; 127: 1413-21.
- 6 Wicks P, Vaughan TE, Massagli MP, Heywood J. Accelerating clinical discovery using self-reported patient data collected online and a patient-matching algorithm. Nat Biotechnol 2011; 29: 411-14.
- 7 Ackland R. Social network services as data sources and platforms for e-researching social networks. Soc Sci Comput Rev 2009; 27: 481-92.
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- 9 Denecke K, Krieck M, Otrusina L, Smrz P, Dolog P, Nejdl W. et al. How to exploit twitter for public health monitoring?. Methods Inf Med 2013; 52 (04) 326-39.
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- 19 Amon KL, Campbell AJ, Hawke C, Steinbeck K. Facebook as a Recruitment Tool for Adolescent Health Research: A Systematic Review. Acad Pediatr 2014; 14 (05) 439-47.
- 20 Leonard A, Hutchesson M, Patterson A, Chalmers K, Collins C. Recruitment and retention of young women into nutrition research studies: practical considerations. Trials 2014; 15: 23.
- 21 Moreno MA, Grant A, Kacvinsky L, Moreno P, Fleming M. Older adolescents´ views regarding participation in Facebook research. J Adolesc Health 2012; 51 (05) 439-44.
- 22 Denecke K. Ethical aspects of using medical social media in healthcare applications. Stud Health Technol Inform 2014; 198: 55-62.
- 23 Byron P, Albury K, Evers C. “It would be weird to have that on Facebook”: young people´s use of social media and the risk of sharing sexual health information. Reprod Health Matters 2013; 21 (41) 35-44.
- 24 Perez-Carceles MD, Lorenzo MD, Luna A. E, Osuna E. Elderly patients also have rights. J Med Ethics 2007; 33: 712-716.
- 25 Mallia P. Clinical intervention in aging: ethicolegal issues in assessing risk and benefit. Clin Interv Aging 2010; 5: 373-80.
- 26 Sorrel T, Drapper H. Telecare, surveillance, and the welfare state. Am J Bioeth 2012; 12 (09) 36-44.
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- 30 Mcare LL. The Video Grade cognitive training platform. www.llmcare.gr , last access Oct 2014.
- 31 Frantzidis CA, Ladas AK, Vivas AB, Tsolaki M, Bamidis PD. Cognitive and physical training for the elderly: Evaluating outcome efficacy by means of neurophysiological synchronization. Int J Psychophysiol 2014; Jul 93 (01) 1-11.
- 32 DISCOVER project, Digital Inclusion Skills for Carers bringing Opportunities, Value and Excellence (project 297268) of the Competitiveness and Innovation Framework Programme Pilot actions by the European Commission. http://www.discover-4carers.eu , last access Oct 2014.
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- 35 Bamidis PD, Sidiropoulos S, Vontas A, Wynne N, Waights V, de Graaf H. et al. Training Material and Quality Assurance Report - Deliverable D4.2 - Revision: 2.8 - Revised version of 1.6.3, DISCOVER project Deliverable, Access through. www.discover4carers.eu
- 36 Payette MJ, Albreski D, Grant-Kels JM. “You’d know if you ‘friended’ me on Facebook”: Legal, moral, and ethical considerations of online social media. J Am Acad Dermatol 2013; 69: 305-7.
- 37 Kane B, Sands DZ. Guidelines for the clinical use of electronic mail with patients. The AMIA Internet Working Group, Task Force on Guidelines for the Use of Clinic-Patient Electronic Mail. J Am Med Inform Assoc 1998; Jan-Feb 5 (01) 104-11.
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- 39 AMA (2014) American Medical Association. AMA Code for Medical Ethics. Opinion 9.124 –Professionalism in the use of social media. URL:. http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion9124.page? (Access: 12.08.2014, 13:21).
- 40 Farnan JM, Snyder Sulmasy L, Worster BK, Chaudhry HJ, Rhyne JA, Arora VM. et al. Online Medical Professionalism: Patient and Public Relationships: Policy Statement From the American College of Physicians and the Federation of State Medical Boards. Ann Intern Med 2013; 158: 620-627.
- 41 CrowdMed. Frequently Asked Questions. Does CrowdMed need to be HIPAA compliant (in the US)? [Date Accessed, September 8, 2014 https://www.crowdmed.com/#!/faqs ]
- 42 Park A. “Web MDs: Social media are changing how we diagnose disease.”. Time 180 (06) 2012; 16-16.
- 43 Househ M. Sharing sensitive personal health information through Facebook: the unintended consequences. Stud Health Technology Inform 2011; 169: 616-20.
- 44 COPPA – Children’s Online Privacy Protection Act. [Date Accessed, September 8, 2014 http://www.coppa.org/comply.htm ]
- 45 Rodriguez-González A, Mayer MA, Fernández-Breis JT. Biomedical Information through the implementation of social media environments. J Biomed Inform 2013; 46: 955-6.
- 46 Herigon J. How social media will merge with electronic medical records. 2011 June 17. In: KevinMD.com. Social media’s leading physician voice. [cited 2014 Sep 25]. Available from: http://www.kevinmd.com/blog/2011/06/social-media-merge-electronic-medical-records.html
- 47 Costa FF. Social networks, web-based tools and diseases: implications for biomedical research. Drug Discov Today 2013; 18 5-6 272-81.
- 48 European Commission (EC).. Justice. Protection of personal data. Reform of data protection legislation. 2012 [cited 2014 Sep 25]. Available from: http://ec.europa.eu/justice/data-protection
- 49 Mayer MA, Leis A. How medical doctors and students should use Social Media: a review of the main guidelines for proposing practical recommendations. Stud Health Technol Inform 2012; 180: 853-7.
- 50 Moorhead SA, Hazlett DE, Harrison L, Carrol JK, Irwin A, Hoving C. A new dimension of health care: systematic review of the uses, benefits, and limitations of social media for health communication. J Med Internet Res 2013; 15 (04) e85.
- 51 Chen BX. Mixed predictions about wearables like smartwatches and Google Glass. Bits [Internet]. 2014 July 2 [cited 2014 Sept 11]. Available from: http://bits.blogs.nytimes.com/2014/07/02/hot-or-not-smart-watches-and-google-glass/?_ php=true&_type=blogs&_r=0.
- 52 Grossman L, Vella M. Never offline. TIME Magazine [Internet]. 2014 Sept 11. [cited 2014 Sept 19]. Available from: http://time.com/3326576/never-offline/.
- 53 Translator App Decodes Crying Babies & Tell you what is wrong. http://www.bitrebels.com/apps/translator-app-decodes-crying-babies/ (accessed 16.04.2015)
- 54 Sproutling:. http://www.sproutling.com (accessed 16.04.2015)
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- 56 OnTrack Diabetes - Android Apps on Google Play - https://play.google.com/store/apps/details?id=com.gexperts.ontrack&hl=en [last accessed: 15.04.2015]
- 57 Diabetes under control - dbees - http://dbees.com [last accessed: 15.04.2015]
- 58 Track3 Diabetes Planner - http://www.track3.com/android_diabetes_logbook/ [last accessed: 15.04.2015]
- 59 Kristjánsdóttir OB, Fors EA, Eide E, Finset A, Stensrud TL, van Dulmen S. et al. A smart-phone-based intervention with diaries and therapist-feedback to reduce catastrophizing and increase functioning in women with chronic widespread pain: randomized controlled trial. J Med Internet Res 2013; Jan 7 15 (01) e5.
- 60 Trafford E. Smartphones: A Better Approach To Clinical Trials. https://www.linkedin.com/pulse/smartphones-better-approach-clinical-trials-evan-trafford (last accessed: 15.04.2015)
- 61 Subramanian C. Why 2014 is not the year of wearables [Internet]. 2014 [cited 2014 Sept 19]. Available from: http://fortune.com/2014/06/20/2014-not-year-wearables.
- 62 The future of biosensing wearables.. Rock Health (2014). Slideshare presentation [Internet]. 2014 [cited 2014 Sept 11]. Available from: http://rockhealth.com/resources/rock-reports/?gclid=-CLiKmsjw5sACFUZbfgodYEcA9g.
- 63 Wessing T. Introducing wearable technology [Internet]. 2013 June. [cited 2014 Sept 21]. Available from: http://www.taylorwessing.com/globaldatahub/article_intro_wearable_technology.html.
- 64 Whitehead LC. Methodological and ethical issues in Internet-mediated research in the field of health: an integrated review of the literature. Soc Sci Med 2007; Aug 65 (04) 782-91.
- 65 Eysenbach G, Till JE. Ethical issues in qualitative research on internet communities. BMJ 2001; Nov 10 323 7321 1103-5.
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