Yearb Med Inform 2016; 25(01): 47-52
DOI: 10.15265/IY-2016-009
IMIA and Schattauer GmbH
Georg Thieme Verlag KG Stuttgart

The Unintended Consequences of Social Media in Healthcare: New Problems and New Solutions

S. Hors-Fraile
1   Department of Computer Technology and Architecture, University of Seville, Seville, Spain
,
S. Atique
2   Graduate Institute of Biomedical Informatics, Taipei Medical University, Taipei, Taiwan
,
M. A. Mayer
3   Research Programme on Biomedical Informatics (GRIB), IMIM-Universitat Pompeu Fabra, Barcelona, Spain
,
K. Denecke
4   Institute for Medical Informatics, Bern University of Applied Sciences, Bern, Switzerland
,
M. Merolli
5   Health and Biomedical Informatics Centre, The University of Melbourne, Victoria, Australia
,
M. Househ
6   King Saud Bin Abdulaziz University for Health Sciences, College of Public Health and Health Informatics, Ministry of National Guard Health Affairs, Riyadh, Kingdom of Saudi Arabia
› Author Affiliations
Further Information

Correspondence to:

Santiago Hors-Fraile
Departamento ATC
Escuela Técnica Superior de Ingeniería Informática
Universidad de Sevilla
41012 Sevilla, Spain
Phone: +34 954 55 68 17   

Publication History

10 November 2016

Publication Date:
06 March 2018 (online)

 

Summary

Objectives: Social media is increasingly being used in conjunction with health information technology (health IT). The objective of this paper is to identify some of the undesirable outcomes that arise from this integration and to suggest solutions to these problems.

Methodology: After a discussion with experts to elicit the topics that should be included in the survey, we performed a narrative review based on recent literature and interviewed multidisciplinary experts from different areas. In each case, we identified and analyzed the unintended effects of social media in health IT.

Results: Each analyzed topic provided a different set of unintended consequences. Most relevant consequences include lack of privacy with ethical and legal issues, patient confusion in disease management, poor information accuracy in crowdsourcing, unclear responsibilities, misleading and biased information in the prevention and detection of epidemics, and demotivation in gamified health solutions with social components.

Conclusions: Using social media in healthcare offers several benefits, but it is not exempt of potential problems, and not all of these problems have clear solutions. We recommend careful design of digital systems in order to minimize patient’s feelings of demotivation and frustration and we recommend following specific guidelines that should be created by all stakeholders in the healthcare ecosystem.


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  • References

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  • 2 Statista [Internet]. [Place unknown]: [publisher unknown]; September 2015 [cited March 27 2016] Available from: http://www.statista.com/statistics/454799/social-media-hours-region/.
  • 3 Stellefson M, Chaney B, Barry AE, Chavarria E, Tennant B, Walsh-Childers K. et al. Web 2.0 chronic disease self-management for older adults: a systematic review. J Med Internet Res 2013 15(2).
  • 4 Velasco E, Agheneza T, Denecke K, Kirchner G, Eckmanns T. Social media and internet-based data in global systems for public health surveillance: a systematic review. Milbank Q 2014; Mar 92 (01) 7-33.
  • 5 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.
  • 6 Allam A, Kostova Z, Nakamoto K, Schulz PJ. The Effect of Social Support Features and Gamification on a Web-Based Intervention for Rheumatoid Arthritis Patients: Randomized Controlled Trial. J Med Internet Res 2015; 17 (01) e14.
  • 7 Goff DA, Kullar R, Newland JG. Review of twitter for infectious diseases clinicians: useful or a waste of time?. Clin Infect Dis 2015; 60 (10) 1533-40.
  • 8 Dyar OJ, Castro-Sánchez E, Holmes AH. What makes people talk about antibiotics on social media? A retrospective analysis of Twitter use. J Antimicrob Chemother 2015; 69 (09) 2568-72.
  • 9 Paul MJ, Dredze M. You are what you Tweet: Analyzing Twitter for public health. In ICWSM 2011; 265-72.
  • 10 Bermúdez-Tamayo C, Alba-Ruiz R, Jiménez-Pernett J, García Gutiérrez J-F, Traver-Salcedo V, Yubraham-Sánchez D. Use of Social Media by Spanish Hospitals: Perceptions, Difficul-ties, and Success Factors. Telemed J eHealth 2013; 19 (02) 137-45.
  • 11 Lau AYS, Gabarron E, Fernandez-Luque L, Armayones M. Social media in health - what are the safety concerns for health consumers?. HIM J 2012; 41 (02) 30-5.
  • 12 Digital Epidemology And Its Ethical, Legal And Social Implications. Berlin (Germany): [publisher unknown] 14-18 September 2015 [cited May 12 2016] Available from: http://www.rki.de/DE/Content/Service/Veranstaltungen/Delsi_booklet.pdf?__blob=publicationFile
  • 13 Mayer MA, Leis A, Mayer A, Rodriguez-González A. How medical doctors and students should use social media: a review of the main guidelines for proposing practical recommendations. Stud Health 2012; 180: 853-7.
  • 14 Canadian Medical Association.. Social media and Canadian physicians – issues and rules of engagement [Internet]. 2011 [cited 2015 Oct 10]. Available from: www.cma.ca/socialmedia.
  • 15 World Medical Association Statement on the professional & ethical use of social media [Internet]. 2011 Oct [cited 2015 Oct 10]. Available from: http://www.wma.net/en/30publications/10policies/s11.
  • 16 American Medical Association Policy in the use of Social Media [Internet].. 2010 Nov [cited 2015 Oct 10] Available from: http://www.ama-assn.org/ama/pub/dab/9124a-abstract.page.
  • 17 Australian Medical Association Council and the New Zealand Medical Association [Internet].. 2010 Nov 30 [cited 2015 Oct 10] Available from: https://ama.com.au/article/social-media-and-medical-profession.
  • 18 British Medical Association: Using social media: practical and ethical guidance for doctors and medical students [Internet].. 2013 Oct 21 [cited 2015 Oct 10] Available from: https://bma.org.uk-/media/files/pdfs/practical advice at work/ethics/ socialmediaguidance.pdf.
  • 19 Denecke K. Ethical aspects of using medical social media in healthcare applications. Stud Health Technol Inform 2014; 198: 55-62.
  • 20 Thompson LA, Dawson K. The intersection of online social networking with medical professionalism. J Gen Intern Med 2008; 23 (07) 954-7.
  • 21 MacDonald J, Sohn S, Ellis P. Privacy, professionalism and Facebook: a dilemma for young doctors. Med Educ 2010; 44: 805-13.
  • 22 Langenfeld SJ, Cook G, Sudbeck C, Luers T, Schenarts PJ. An assessment of unprofessional behaviour among surgical residents on Facebook: a warning of the dangers of social media. J Surg Educ 2014; 71 (06) e28-32.
  • 23 White J, Kirwan P, Krista L, Walton J, Ross S. ‘Have you seen what is on Facebook?’ The use of social networking software by healthcare professions students. BMJ Open 2013; 3: e003013.
  • 24 Chretien KC, Greysen SR, Chretien JP. Online posting of unprofessional content by medical students. JAMA 2009; 302: 1309-15.
  • 25 Benetoli A, Chen TF, Aslani P. The use of social media in pharmacy practice and education. Res Social Adm Pharm 2015; 11 (01) 1-46.
  • 26 The IMIA Code of Ethics for Health Informatics Professionals. International Medical Informatics Association. [Internet]. [Place unknown]: [publisher unknown]; March 2016 [cited May 12 2016] Available from: http://www.imia-medinfo.org/new2/pubdocs/Ethics_Eng.pdf.
  • 27 von Etter P, Huttunen S, Vihavainen A, Vuorinen M, Yangarber R. Assessment of utility in web mining for the domain of public health. Proceedings of the NAACL HLT 2010 Second Louhi Workshop on Text and Data Mining of Health Documents 2012 p. 29-37.
  • 28 Becker KL. Cyberhugs: creating a voice for chronic pain sufferers through technology. Cyberpsychol Behav Soc Netw 2013; 16 (02) 123-6.
  • 29 de Boer M, Slatman J. Blogging and breast cancer: narrating one’s life, body and self on the Internet. Women Stud Int Forum 2014 44(0).
  • 30 Huh J, Liu LS, Neogi T, Inkpen K, Pratt W. Health vlogs as social support for chronic illness management. ACM Trans Comput Hum Interact 2014 21(4).
  • 31 Mo PK, Coulson NS. Online support group use and psychological health for individuals living with HIV/AIDS. Patient Educ Couns 2013; 93 (03) 426-32.
  • 32 Merolli M, Gray K, Martin-Sanchez F. Therapeutic Affordances of Social Media: Emergent Themes From a Global Online Survey of People With Chronic Pain. J Med Internet Res 2014; 16 (12) e284.
  • 33 Nordfeldt S, Hanberger L, Berterö C. Patient and Parent Views on a Web 2.0 Diabetes Portal—the Management Tool, the Generator, and the Gate-keeper: Qualitative Study. J Med Internet Res 2010; 12 (02) e17.
  • 34 Pousti H, Burstein F. Barriers of using social media to support health-related decisions: A sociomaterial perspective. Proceedings of the 17th IFIP Working Group 8.3 International Conference on Decision Support Systems, 02 June 2014 to 05 June 2014. Amsterdam Netherlands: IOS Press BV; 2014. p. 545-56.
  • 35 Zebrack B, Isaacson S. Psychosocial care of adolescent and young adult patients with cancer and survivors. J Clin Oncol 2012; 30 (11) 1221-6.
  • 36 Maier-Hein L, Mersmann S, Kondermann D, Bodenstedt S, Sanchez A, Stock C. et al. Can masses of non-experts train highly accurate image classifiers? A crowdsourcing approach to instrument segmentation in laparoscopic images. Med Image Comput Comput Assist Interv 2014; 17 Pt (02) 438-45.
  • 37 Naroditskiy V, Rahwan I, Cebrian M, Jennings NR. Verification in referral-based crowdsourcing. PLoS One 2012; 7 (10) e45924.
  • 38 Warrior Eli Hoax Group.. Finding The Fakers One At a time [Internet]. [Place unknown]: [publisher unknown]; May 2016 [cited May 04 2016] Available from: http://www.warriorelihoax.com.
  • 39 Childers L. Forbes, Next Avenue [Internet]. [Place unknown]. Childers L. When Medical Bills Pile Up, Can you Crowdfund Your Health Care?. 2013 [cited 2015 October 20]. Available from: http://www.forbes.com/sites/nextavenue/2013/04/17/when-medical-bills-pile-up-can-you-crowdfund-your-health-care/.
  • 40 Celi LA, Ippolito A, Montgomery RA, Moses C, Stone DJ. Crowdsourcing knowledge discovery and innovations in medicine. J Med Internet Res 2014; Sep 19 16 (09) e216.
  • 41 Denecke K, Bamidis P, Bond C. et al. Ethical Issues of Social Media Usage in Healthcare. Yearb Med Inform 2015; 10 (01) 137-47.
  • 42 Lyons EJ, Lewis ZH, Mayrsohn BG, Rowland JL. Behavior Change Techniques Implemented in Electronic Lifestyle Activity Monitors: A Systematic Content Analysis. J Med Internet Res 2014; 16 (08) e192.
  • 43 Lee Y, Lim Y-K. Understanding the Roles and Influences of Mediators from Multiple Social Channels for Health Behavior Change Proceeding CSCW ‘15 Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing. 2015 p. 1070-9.
  • 44 Ancker JS, Witteman HO, Hafeez B, Provencher T, Van de Graaf M, Wei E. “You Get Reminded You’re a Sick Person”: Personal Data Tracking and Patients With Multiple Chronic Conditions. J Med Internet Res 2015; 17 (08) e202.
  • 45 Hilliard ME, Hahn A, Ridge AK, Eakin MN, Riekert KA. User Preferences and Design Recommendations for an mHealth App to Promote Cystic Fibrosis Self-Management. JMIR mHealth uHealth 2014; 2 (04) e44.
  • 46 Curtis KE, Lahiri S, Brown KE. Targeting Parents for Childhood Weight Management: Development of a Theory-Driven and User-Centered Healthy Eating App. JMIR mHealth uHealth 2015; 3 (02) e69.
  • 47 Saksono H, Ranade A, Kamarthi G, Castaneda-Sceppa C, Hoffman JA, Wirth C. et al. Spaceship Launch: Designing a Collaborative Exergame for Families. CSCW 15 2015; p. 1776-87.
  • 48 Walthouwer MJL, Oenema A, Lechner L, de Vries H. Use and Effectiveness of a Video- and Text-Driven Web-Based Computer-Tailored Intervention: Randomized Controlled Trial. J Med Internet Res 2015; 17 (09) e222.

Correspondence to:

Santiago Hors-Fraile
Departamento ATC
Escuela Técnica Superior de Ingeniería Informática
Universidad de Sevilla
41012 Sevilla, Spain
Phone: +34 954 55 68 17   

  • References

  • 1 Statista [Internet]. [Place unknown]: [publisher unknown]; March 2016 [cited March 27 2016] Available from: http://www.statista.com/statistics/433871/daily-social-media-usage-worldwide.
  • 2 Statista [Internet]. [Place unknown]: [publisher unknown]; September 2015 [cited March 27 2016] Available from: http://www.statista.com/statistics/454799/social-media-hours-region/.
  • 3 Stellefson M, Chaney B, Barry AE, Chavarria E, Tennant B, Walsh-Childers K. et al. Web 2.0 chronic disease self-management for older adults: a systematic review. J Med Internet Res 2013 15(2).
  • 4 Velasco E, Agheneza T, Denecke K, Kirchner G, Eckmanns T. Social media and internet-based data in global systems for public health surveillance: a systematic review. Milbank Q 2014; Mar 92 (01) 7-33.
  • 5 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.
  • 6 Allam A, Kostova Z, Nakamoto K, Schulz PJ. The Effect of Social Support Features and Gamification on a Web-Based Intervention for Rheumatoid Arthritis Patients: Randomized Controlled Trial. J Med Internet Res 2015; 17 (01) e14.
  • 7 Goff DA, Kullar R, Newland JG. Review of twitter for infectious diseases clinicians: useful or a waste of time?. Clin Infect Dis 2015; 60 (10) 1533-40.
  • 8 Dyar OJ, Castro-Sánchez E, Holmes AH. What makes people talk about antibiotics on social media? A retrospective analysis of Twitter use. J Antimicrob Chemother 2015; 69 (09) 2568-72.
  • 9 Paul MJ, Dredze M. You are what you Tweet: Analyzing Twitter for public health. In ICWSM 2011; 265-72.
  • 10 Bermúdez-Tamayo C, Alba-Ruiz R, Jiménez-Pernett J, García Gutiérrez J-F, Traver-Salcedo V, Yubraham-Sánchez D. Use of Social Media by Spanish Hospitals: Perceptions, Difficul-ties, and Success Factors. Telemed J eHealth 2013; 19 (02) 137-45.
  • 11 Lau AYS, Gabarron E, Fernandez-Luque L, Armayones M. Social media in health - what are the safety concerns for health consumers?. HIM J 2012; 41 (02) 30-5.
  • 12 Digital Epidemology And Its Ethical, Legal And Social Implications. Berlin (Germany): [publisher unknown] 14-18 September 2015 [cited May 12 2016] Available from: http://www.rki.de/DE/Content/Service/Veranstaltungen/Delsi_booklet.pdf?__blob=publicationFile
  • 13 Mayer MA, Leis A, Mayer A, Rodriguez-González A. How medical doctors and students should use social media: a review of the main guidelines for proposing practical recommendations. Stud Health 2012; 180: 853-7.
  • 14 Canadian Medical Association.. Social media and Canadian physicians – issues and rules of engagement [Internet]. 2011 [cited 2015 Oct 10]. Available from: www.cma.ca/socialmedia.
  • 15 World Medical Association Statement on the professional & ethical use of social media [Internet]. 2011 Oct [cited 2015 Oct 10]. Available from: http://www.wma.net/en/30publications/10policies/s11.
  • 16 American Medical Association Policy in the use of Social Media [Internet].. 2010 Nov [cited 2015 Oct 10] Available from: http://www.ama-assn.org/ama/pub/dab/9124a-abstract.page.
  • 17 Australian Medical Association Council and the New Zealand Medical Association [Internet].. 2010 Nov 30 [cited 2015 Oct 10] Available from: https://ama.com.au/article/social-media-and-medical-profession.
  • 18 British Medical Association: Using social media: practical and ethical guidance for doctors and medical students [Internet].. 2013 Oct 21 [cited 2015 Oct 10] Available from: https://bma.org.uk-/media/files/pdfs/practical advice at work/ethics/ socialmediaguidance.pdf.
  • 19 Denecke K. Ethical aspects of using medical social media in healthcare applications. Stud Health Technol Inform 2014; 198: 55-62.
  • 20 Thompson LA, Dawson K. The intersection of online social networking with medical professionalism. J Gen Intern Med 2008; 23 (07) 954-7.
  • 21 MacDonald J, Sohn S, Ellis P. Privacy, professionalism and Facebook: a dilemma for young doctors. Med Educ 2010; 44: 805-13.
  • 22 Langenfeld SJ, Cook G, Sudbeck C, Luers T, Schenarts PJ. An assessment of unprofessional behaviour among surgical residents on Facebook: a warning of the dangers of social media. J Surg Educ 2014; 71 (06) e28-32.
  • 23 White J, Kirwan P, Krista L, Walton J, Ross S. ‘Have you seen what is on Facebook?’ The use of social networking software by healthcare professions students. BMJ Open 2013; 3: e003013.
  • 24 Chretien KC, Greysen SR, Chretien JP. Online posting of unprofessional content by medical students. JAMA 2009; 302: 1309-15.
  • 25 Benetoli A, Chen TF, Aslani P. The use of social media in pharmacy practice and education. Res Social Adm Pharm 2015; 11 (01) 1-46.
  • 26 The IMIA Code of Ethics for Health Informatics Professionals. International Medical Informatics Association. [Internet]. [Place unknown]: [publisher unknown]; March 2016 [cited May 12 2016] Available from: http://www.imia-medinfo.org/new2/pubdocs/Ethics_Eng.pdf.
  • 27 von Etter P, Huttunen S, Vihavainen A, Vuorinen M, Yangarber R. Assessment of utility in web mining for the domain of public health. Proceedings of the NAACL HLT 2010 Second Louhi Workshop on Text and Data Mining of Health Documents 2012 p. 29-37.
  • 28 Becker KL. Cyberhugs: creating a voice for chronic pain sufferers through technology. Cyberpsychol Behav Soc Netw 2013; 16 (02) 123-6.
  • 29 de Boer M, Slatman J. Blogging and breast cancer: narrating one’s life, body and self on the Internet. Women Stud Int Forum 2014 44(0).
  • 30 Huh J, Liu LS, Neogi T, Inkpen K, Pratt W. Health vlogs as social support for chronic illness management. ACM Trans Comput Hum Interact 2014 21(4).
  • 31 Mo PK, Coulson NS. Online support group use and psychological health for individuals living with HIV/AIDS. Patient Educ Couns 2013; 93 (03) 426-32.
  • 32 Merolli M, Gray K, Martin-Sanchez F. Therapeutic Affordances of Social Media: Emergent Themes From a Global Online Survey of People With Chronic Pain. J Med Internet Res 2014; 16 (12) e284.
  • 33 Nordfeldt S, Hanberger L, Berterö C. Patient and Parent Views on a Web 2.0 Diabetes Portal—the Management Tool, the Generator, and the Gate-keeper: Qualitative Study. J Med Internet Res 2010; 12 (02) e17.
  • 34 Pousti H, Burstein F. Barriers of using social media to support health-related decisions: A sociomaterial perspective. Proceedings of the 17th IFIP Working Group 8.3 International Conference on Decision Support Systems, 02 June 2014 to 05 June 2014. Amsterdam Netherlands: IOS Press BV; 2014. p. 545-56.
  • 35 Zebrack B, Isaacson S. Psychosocial care of adolescent and young adult patients with cancer and survivors. J Clin Oncol 2012; 30 (11) 1221-6.
  • 36 Maier-Hein L, Mersmann S, Kondermann D, Bodenstedt S, Sanchez A, Stock C. et al. Can masses of non-experts train highly accurate image classifiers? A crowdsourcing approach to instrument segmentation in laparoscopic images. Med Image Comput Comput Assist Interv 2014; 17 Pt (02) 438-45.
  • 37 Naroditskiy V, Rahwan I, Cebrian M, Jennings NR. Verification in referral-based crowdsourcing. PLoS One 2012; 7 (10) e45924.
  • 38 Warrior Eli Hoax Group.. Finding The Fakers One At a time [Internet]. [Place unknown]: [publisher unknown]; May 2016 [cited May 04 2016] Available from: http://www.warriorelihoax.com.
  • 39 Childers L. Forbes, Next Avenue [Internet]. [Place unknown]. Childers L. When Medical Bills Pile Up, Can you Crowdfund Your Health Care?. 2013 [cited 2015 October 20]. Available from: http://www.forbes.com/sites/nextavenue/2013/04/17/when-medical-bills-pile-up-can-you-crowdfund-your-health-care/.
  • 40 Celi LA, Ippolito A, Montgomery RA, Moses C, Stone DJ. Crowdsourcing knowledge discovery and innovations in medicine. J Med Internet Res 2014; Sep 19 16 (09) e216.
  • 41 Denecke K, Bamidis P, Bond C. et al. Ethical Issues of Social Media Usage in Healthcare. Yearb Med Inform 2015; 10 (01) 137-47.
  • 42 Lyons EJ, Lewis ZH, Mayrsohn BG, Rowland JL. Behavior Change Techniques Implemented in Electronic Lifestyle Activity Monitors: A Systematic Content Analysis. J Med Internet Res 2014; 16 (08) e192.
  • 43 Lee Y, Lim Y-K. Understanding the Roles and Influences of Mediators from Multiple Social Channels for Health Behavior Change Proceeding CSCW ‘15 Proceedings of the 18th ACM Conference on Computer Supported Cooperative Work & Social Computing. 2015 p. 1070-9.
  • 44 Ancker JS, Witteman HO, Hafeez B, Provencher T, Van de Graaf M, Wei E. “You Get Reminded You’re a Sick Person”: Personal Data Tracking and Patients With Multiple Chronic Conditions. J Med Internet Res 2015; 17 (08) e202.
  • 45 Hilliard ME, Hahn A, Ridge AK, Eakin MN, Riekert KA. User Preferences and Design Recommendations for an mHealth App to Promote Cystic Fibrosis Self-Management. JMIR mHealth uHealth 2014; 2 (04) e44.
  • 46 Curtis KE, Lahiri S, Brown KE. Targeting Parents for Childhood Weight Management: Development of a Theory-Driven and User-Centered Healthy Eating App. JMIR mHealth uHealth 2015; 3 (02) e69.
  • 47 Saksono H, Ranade A, Kamarthi G, Castaneda-Sceppa C, Hoffman JA, Wirth C. et al. Spaceship Launch: Designing a Collaborative Exergame for Families. CSCW 15 2015; p. 1776-87.
  • 48 Walthouwer MJL, Oenema A, Lechner L, de Vries H. Use and Effectiveness of a Video- and Text-Driven Web-Based Computer-Tailored Intervention: Randomized Controlled Trial. J Med Internet Res 2015; 17 (09) e222.