Balancing Between Privacy and Patient Needs for Health Information in the Age of Participatory Health and Social Media: A Scoping Review

Mowafa Househ; Rebecca Grainger; Carolyn Petersen; Panagiotis Bamidis; Mark Merolli

doi:10.1055/s-0038-1641197

Yearbook of Medical Informatics, Table of Contents

CC BY-NC-ND 4.0 · Yearb Med Inform 2018; 27(01): 029-036
DOI: 10.1055/s-0038-1641197

Special Section: Between Access and Privacy: Challenges in Sharing Health Data

Working Group Contributions

Georg Thieme Verlag KG Stuttgart

Balancing Between Privacy and Patient Needs for Health Information in the Age of Participatory Health and Social Media: A Scoping Review

Authors

Mowafa Househ

¹Department of Health Informatics, College of Public Health and Health Informatics, King Saud Bin Abdulaziz University for Health Sciences, Ministry of National Guard Health Affairs, Riyadh, Kingdom of Saudi Arabia
Rebecca Grainger

²Rehabilitation Teaching and Research Unit (RTRU), University of Otago, Wellington, New Zealand
Carolyn Petersen

³Global Business Solutions, Mayo Clinic, Rochester, Minnesota, United States
Panagiotis Bamidis

⁴Lab of Medical Physics, Medical School, Aristotle University, Thessaloniki, Greece

⁵Leeds Institute of Medical Education, University of Leeds, Leeds, United Kingdom
Mark Merolli

⁶School of Health Science, Swinburne University of Technology, Melbourne, Australia

Abstract

Summary

Objectives: With the increased use of participatory health enabling technologies, such as social media, balancing the need for health information with patient privacy and confidentiality has become a more complex and immediate concern. The purpose of this paper produced by the members of the IMIA Participatory Health and Social Media (PHSM) working group is to investigate patient needs for health information using participatory health enabling technologies, while balancing their needs for privacy and confidentiality.

Methods: Six domain areas including media sharing platforms, patient portals, web-based platforms, crowdsourcing websites, medical avatars, and other mobile health technologies were identified by five members of the IMIA PHSM working group as relevant to participatory health and the balance between data sharing and patient needs for privacy and confidentiality. After identifying the relevant domain areas, our scoping review began by searching several databases such as PubMed, MEDLINE, Scopus, and Google Scholar using a variety of key search terms.

Results: A total of 1,973 studies were identified, of which 68 studies met our inclusion criteria and were included in the analysis. Results showed that challenges for balancing patient needs for information and privacy and confidentiality concerns included: cross-cultural understanding, clinician and patient awareness, de-identification of data, and commercialization of patient data. Some opportunities identified were patient empowerment, connecting participatory health enabling technologies with clinical records, open data sharing agreement, and e-consent.

Conclusion: Balancing between privacy and patient needs for health information in the age of participatory health and social media offers several opportunities and challenges. More people are engaging in actively managing health through participatory health enabling technologies. Such activity often includes sharing health information and with this comes a perennial tension between balancing individual needs and the desire to uphold privacy and confidentiality. We recommend that guidelines for both patients and clinicians, in terms of their use of participatory health-enabling technologies, are developed to ensure that patient privacy and confidentiality are protected, and a maximum benefit can be realized.

Keywords

Participatory health - social media - privacy - data sharing

Full Text

References

References
1 Denecke K. Ethical aspects of using medical social media in healthcare applications. Stud Health Technol Inform 2014; May 23; 198: 55-62
2 Gibbons MC. Personal health and consumer informatics. The impact of health oriented social media applications on health outcomes. Yearb Med Inform 2013; 8: 159-61 . europepmc.org [Internet]. 2013; Available from: http://europepmc.org/ab-stract/med/23974564
3 Eysenbach G. Medicine 2.0: social networking, collaboration, participation, apomediation, and openness. J Med Internet Res 2008; Aug 25; 10 (03) e22
4 deBronkart D. From patient centred to people powered: autonomy on the rise. BMJ 2015; Feb 10; 350: h148
5 Swan M. Health 2050: The Realization of Personalized Medicine through Crowdsourcing, the Quantified Self, and the Participatory Biocitizen. J Pers Med 2012; Sep 12; 2 (03) 93-118
6 Grajales 3rd FJ, Sheps S, Ho K, Novak-Lauscher H, Eysenbach G. Social media: a review and tutorial of applications in medicine and health care. J Med Internet Res 2014; Feb 11; 16 (02) e13
7 Hors-Fraile S, Atique S, Mayer MA, Denecke K, Merolli M, Househ M. The Unintended Consequences of Social Media in Healthcare: New Problems and New Solutions. Yearb Med Inform 2016; Nov 10; (01) 47-52
8 Miron-Shatz T, Hansen MM, Grajales 3rd FJ, Martin-Sanchez F, Bamidis PD. Social Media for the Promotion of Holistic Self-Participatory Care: An Evidence Based Approach. Contribution of the IMIA Social Media Working Group. Yearb Med Inform 2013; 8: 162-8
9 Kaye J, Curren L, Anderson N, Edwards K, Fullerton SM, Kanellopoulou N. , et al. From patients to partners: participant-centric initiatives in biomedical research. Nat Rev Genet 2012; Apr 3; 13 (05) 371-6
10 Shachak A, Jadad AR. Electronic health records in the age of social networks and global telecommunications. JAMA 2010; Feb 3; 303 (05) 452-3
11 Murdoch TB, Detsky AS. The inevitable application of big data to health care. JAMA 2013; Apr 3; 309 (13) 1351-2
12 Bloomrosen M, Detmer DE. Informatics, evidence-based care, and research; implications for national policy: a report of an American Medical Informatics Association health policy conference. J Am Med Inform Assoc 2010; Mar; 17 (02) 115-23
13 Baldwin M, Spong A, Doward L, Gnanasakthy A. Patient-reported outcomes, patient-reported information: from randomized controlled trials to the social web and beyond. Patient 2011; 4 (01) 11-7
14 Zarcadoolas C, Vaughon WL, Czaja SJ, Levy J, Rockoff ML. Consumers’ perceptions of patient-accessible electronic medical records. J Med Internet Res 2013; Aug 26; 15 (08) e168
15 Beard L, Schein R, Morra D, Wilson K, Keelan J. The challenges in making electronic health records accessible to patients. J Am Med Inform Assoc 2012; Jan; 19 (01) 116-20
16 Bansal G, Zahedi FM, Gefen D. The impact of personal dispositions on information sensitivity, privacy concern and trust in disclosing health information online. Decis Support Syst 2010; May 1; 49 (02) 138-50
17 Sakaguchi-Tang DK, Bosold AL, Choi YK, Turner AM. Patient Portal Use and Experience Among Older Adults: Systematic Review. JMIR Med Inform 2017; Oct 16; 5 (04) e38
18 Dhanireddy S, Walker J, Reisch L, Oster N, Delbanco T, Elmore JG. The urban underserved: attitudes towards gaining full access to electronic medical records. Health Expect 2014; Oct; 17 (05) 724-32
19 Tieu L, Sarkar U, Schillinger D, Ralston JD, Ratanawongsa N, Pasick R. , et al. Barriers and Facilitators to Online Portal Use Among Patients and Caregivers in a Safety Net Health Care System: A Qualitative Study. J Med Internet Res 2015; Dec 3; 17 (12) e275
20 Schickedanz A, Huang D, Lopez A, Cheung E, Lyles CR, Bodenheimer T. , et al. Access, interest, and attitudes toward electronic communication for health care among patients in the medical safety net. J Gen Intern Med 2013; Jul; 28 (07) 914-20
21 Collins S, Dykes P, Bates DW, Couture B, Rozenblum R, Prey J. , et al. An informatics research agenda to support patient and family empowerment and engagement in care and recovery during and after hospitalization. J Am Med Inform Assoc [Internet]. 2017 Jun 17; Available from: http://dx.doi.org/10.1093/jamia/ocx054
22 Patient-Perceived Facilitators of and Barriers to Electronic Portal Use: A Systematic Review. Comput Inform Nurs 2017; Nov; 35 (11) 606-7
23 King G, Maxwell J, Karmali A, Hagens S, Pinto M, Williams L. , et al. Connecting Families to Their Health Record and Care Team: The Use, Utility, and Impact of a Client/Family Health Portal at a Children's Rehabilitation Hospital. J Med Internet Res 2017; Apr 6; 19 (04) e97
24 Cosgrove V, Gliddon E, Berk L, Grimm D, Lauder S, Dodd S. , et al. Online ethics: where will the interface of mental health and the internet lead us?. Int J Bipolar Disord 2017; Dec; 5 (01) 26
25 Batterham PJ, Calear AL. Preferences for Internet-Based Mental Health Interventions in an Adult Online Sample: Findings From an Online Community Survey. JMIR Ment Health 2017; Jun 30; 4 (02) e26
26 Lygidakis C, Wallace P, Tersar C, Marcatto F, Ferrante D, Della Vedova R. , et al. Download Your Doctor: Implementation of a Digitally Mediated Personal Physician Presence to Enhance Patient Engagement With a Health-Promoting Internet Application. JMIR Res Protoc 2016; Mar 4; 5 (01) e36
27 Brady SS, Sieving RE, Terveen LG, Rosser BRS, Kodet AJ, Rothberg VD. An Interactive Website to Reduce Sexual Risk Behavior: Process Evaluation of TeensTalkHealth. JMIR Res Protoc 2015; Sep 2; 4 (03) e106
28 Bender JL, Cyr AB, Arbuckle L, Ferris LE. Ethics and Privacy Implications of Using the Internet and Social Media to Recruit Participants for Health Research: A Privacy-by-Design Framework for Online Recruitment. J Med Internet Res 2017; Apr 6; 19 (04) e104
29 Wakefield BJ, Alexander G, Dohrmann M, Richardson J. Design and Evaluation of a Web-Based Symptom Monitoring Tool for Heart Failure. Comput Inform Nurs 2017; May; 35 (05) 248-54
30 Choi Y, Lee MJ, Kang HC, Lee MS, Yoon S. Development and application of a web-based nutritional management program to improve dietary behaviors for the prevention ofmetabolic syndrome. Comput Inform Nurs 2014; May; 32 (05) 232-41
31 Mao J, Chen Y, Shi F, Jia Y, Liang Z. Toward Exposing Timing-Based Probing Attacks in Web Applications. Sensors [Internet] 2017 Feb 25;17(03). Available from: http://dx.doi.org/10.3390/s17030464
32 Olden M, Holle R, Heid IM, Stark K. IDGenerator: unique identifier generator for epidemiologic or clinical studies. BMC Med Res Methodol 2016; Sep 15; 16: 120
33 Green AK, Reeder-Hayes KE, Corty RW, Basch E, Milowsky MI, Dusetzina SB. , et al. The project data sphere initiative: accelerating cancer research by sharing data. Oncologist 2015; May; 20 (05) 464-e20
34 Price M, Yuen EK, Goetter EM, Herbert JD, Forman EM, Acierno R. , et al. mHealth: a mechanism to deliver more accessible, more effective mental health care. Clin Psychol Psychother 2014; Sep; 21 (05) 427-36
35 Nebeker C, Murray K, Holub C, Haughton J, Arredondo EM. Acceptance of Mobile Health in Communities Underrepresented in Biomedical Research: Barriers and Ethical Considerations for Scientists. JMIR Mhealth Uhealth 2017; Jun 28; 5 (06) e87
36 Martínez-Pérez B, de la Torre-Díez I, López-Coro-nado M. Privacy and security in mobile health apps: a review and recommendations. J Med Syst 2015; Jan; 39 (01) 181
37 Hussain M, Al-Haiqi A, Zaidan AA, Zaidan BB, Kiah MLM, Anuar NB. , et al. The landscape of research on smartphone medical apps: Coherent taxonomy, motivations, open challenges and recommendations. Comput Methods Programs Biomed 2015; Dec; 122 (03) 393-408
38 Boulos MNK, Brewer AC, Karimkhani C, Buller DB, Dellavalle RP. Mobile medical and health apps: state of the art, concerns, regulatory control and certification. Online J Public Health Inform 2014; Feb 5; 5 (03) 229
39 Hogan NM, Kerin MJ. Smart phone apps: smart patients, steer clear. Patient Educ Couns 2012; Nov; 89 (02) 360-1
40 Elias BL, Fogger SA, McGuinness TM, D' Alessandro KR. Mobile apps for psychiatric nurses. J Psychosoc Nurs Ment Health Serv 2014; Apr; 52 (04) 42-7
41 Grundy QH, Wang Z, Bero LA. Challenges in Assessing Mobile Health App Quality: A Systematic Review of Prevalent and Innovative Methods. Am J Prev Med 2016; Dec; 51 (06) 1051-9
42 Sunyaev A, Dehling T, Taylor PL, Mandl KD. Availability and quality of mobile health app privacy policies. J Am Med Inform Assoc 2015; Apr; 22 (e1): e28-33
43 Kao C-K, Liebovitz DM. Consumer Mobile Health Apps: Current State, Barriers, and Future Directions. PM R 2017; May; 9 (5S): S106-15
44 Morera EP, de la Torre Díez I, Garcia-Zapirain B, López-Coronado M, Arambarri J. Security Recommendations for mHealth Apps: Elaboration of a Developer's Guide. J Med Syst 2016; Jun; 40 (06) 152
45 Katusiime J, Pinkwart N. A review of privacy and usability issues in mobile health systems: Role of external factors. Health Informatics J 2017 Oct 1;1460458217733121
46 Aranda-Jan CB, Mohutsiwa-Dibe N, Loukanova S. Systematic review on what works, what does not work and why of implementation of mobile health (mHealth) projects in Africa. BMC Public Health 2014; Feb 21; 14 (01) 188
47 Kotz D, Gunter CA, Kumar S. Weiner JP Privacy and Security in Mobile Health: A Research Agenda. Computer 2016; Jun; 49 (06) 22-30
48 Madathil KC, Rivera-Rodriguez AJ, Greenstein JS, Gramopadhye AK. Healthcare information on YouTube: A systematic review. Health Informatics J 2014; Mar 25; 21 (03) 173-94
49 Dorfman RG, Vaca EE, Fine NA, Schierle CF. The Ethics of Sharing Plastic Surgery Videos on Social Media. Plast Reconstr Surg 2017; Oct 1; 140 (04) 825-36
50 Gómez-Zúñiga B, Fernandez-Luque L, Pousada M, Hernández-Encuentra E, Armayones M. ePa-tients on YouTube: Analysis of Four Experiences From the Patients’ Perspective. Med 20 2012; Jan 1; 1 (01) e1-7
51 Making and using visual and audio recordings of patients. 2009 Jul 22 [cited 2017 Nov 12]; Available from: https://www.gmc-uk.org/guidance/ ethical_guidance/making_audiovisual.asp
52 Crane GM, Gardner JM. Pathology Image-Sharing on Social Media: Recommendations for Protecting Privacy While Motivating Education. AMA J Ethics 2016; Aug 1; 18 (08) 817-25
53 Ranschaert ER, Ooijen PMA, Lee S, Ratib O, Parizel PM. Social media for radiologists: an introduction. Insights Imaging 2015; Nov 19; 1-12
54 Steele S, Adcock C, Steel A. Ethical, legal and professional issues arising from social media coverage by UK Helicopter Emergency Medical Services. Emerg Med J 2015; Dec 23; 33 (01) 57-60
55 Cadogan M, Thoma B, Chan TM, Lin M. Free Open Access Meducation (FOAM): the rise of emergency medicine and critical care blogs and podcasts (2002-2013). Emerg Med J 2014; Oct 1; 31 (e1): e76-7
56 Lamas E, Salinas R, Coquedano C, Simon M-P, Bousquet C, Ferrer M. , et al. The Meaning of Patient Empowerment in the Digital Age: The Role of Online Patient-Communities. Stud Health Technol Inform 2017; 244: 43-7
57 Meyer AND, Longhurst CA, Singh H. Crowd-sourcing Diagnosis for Patients With Undiagnosed Illnesses: An Evaluation of CrowdMed. J Med Internet Res 2016; Jan 14; 18 (01) e12
58 Ranard BL, Ha YP, Meisel ZF, Asch DA, Hill SS, Becker LB. , et al. Crowdsourcing-harnessing the masses to advance health and medicine, a systematic review. J Gen Intern Med 2014; Jan; 29 (01) 187-203
59 Aungst H, Fishman JR, McGowan ML. Participatory Genomic Research: Ethical Issues from the Bottom Up to the Top Down. Annu Rev Genomics Hum Genet 2017; Aug 31; 18: 357-67
60 Brabham DC, Ribisl KM, Kirchner TR, Bernhardt JM. Crowdsourcing applications for public health. Am J Prev Med 2014; Feb; 46 (02) 179-87
61 Young MJ, Scheinberg E. The Rise of Crowdfund-ing for Medical Care: Promises and Perils. JAMA 2017; Apr 25; 317 (16) 1623-4
62 Zarate OA, Brody JG, Brown P, Ramirez-Andreotta MD, Perovich L, Matz J. Balancing Benefits and Risks of Immortal Data. Hastings Cent Rep 2016; Jan 1; 46 (01) 36-45
63 Personal Genome Projects: Global Network [Internet]. . [cited 2017 Nov 12]. Available from: http://www.personalgenomes.org/
64 Wikipedia contributors. . Avatar (computing) [Internet]. Wikipedia, The Free Encyclopedia. 2017 [cited 2017 Nov 16]. Available from: https://en.wikipedia.org/w/index.php?title=Avatar_(com-puting)&oldid=810176189
65 Wang VCX. Handbook ofResearch on E-Learning Applications for Career and Technical Education: Technologies for Vocational Training: Technologies for Vocational Training. IGI Global; 2009: 1028 p
66 Lawrence L. Code and other Laws of Cyberspace; 1999
67 Intelligent Virtual Agents | SpringerLink [Internet] [cited 2017 Nov 16]. Available from: http://link.springer.com/content/pdf/10.1007/978-3-642-40415-3.pdf
68 Chi N-C, Sparks O, Lin S-Y, Lazar A, Thompson HJ, Demiris G. Pilot testing a digital pet avatar for older adults. Geriatr Nurs [Internet] 2017 May 4; Available from: http://dx.doi.org/10.1016/j.gerinurse.2017.04.002
69 Meropi P, Billis AS, Hasanagas ND, Bratsas C, Antoniou I, Bamidis PD. Conditional Entropy Based Retrieval Model in Patient-Carer Conversational Cases. In: 2017 IEEE 30th International Symposium on Computer-Based Medical Systems (CBMS). 2017 p. 576-81
70 Graber MA, Graber AD. Get your paws off of my pixels: personal identity and avatars as self. J Med Internet Res 2010; Jul 13; 12 (03) e28
71 Yellowlees PM, Holloway KM, Parish MB. Therapy in virtual environments-clinical and ethical issues.. Telemed J E Health 2012; Sep; 18 (07) 558-64
72 Pouke M, Hakkila J. Elderly healthcare monitoring using an avatar-based 3D virtual environment. Int J Environ Res Public Health 2013; Dec 17; 10 (12) 7283-98
73 Reamer - Social work FG, 2013. Social work in a digital age: Ethical and risk management challenges. academic.oup.com [Internet]. 2013; Available from: https://academic.oup.com/sw/article-abstract/58/2/163/1940392
74 Gordon MS, Carswell SB, Schadegg M, Mangen K, Merkel K, Tangires S. , et al. Avatar-assisted therapy: a proof-of-concept pilot study of a novel technology-based intervention to treat substance use disorders. Am J Drug Alcohol Abuse 2017; Sep; 43 (05) 518-24
75 Gardiner PM, McCue KD, Negash LM, Cheng T, White LF, Yinusa-Nyahkoon L. , et al. Engaging women with an embodied conversational agent to deliver mindfulness and lifestyle recommendations: A feasibility randomized control trial. Patient Educ Couns 2017; Sep; 100 (09) 1720-9
76 Andrade AD, Bagri A, Zaw K, Roos BA, Ruiz JG. Avatar-mediated training in the delivery of bad news in a virtual world. J Palliat Med 2010; Dec; 13 (12) 1415-9