← Back to Search
Balancing Between Privacy And Patient Needs For Health Information In The Age Of Participatory Health And Social Media: A Scoping Review
M. Househ, R. Grainger, C. Petersen, P. Bamidis, M. Merolli
Published 2018 · Business, Medicine
Download PDFAnalyze on Scholarcy
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.
This paper references
Consumer Mobile Health Apps: Current State, Barriers, and Future Directions
C. Kao (2017)
Social Media: A Review and Tutorial of Applications in Medicine and Health Care
F. Grajales (2014)
Social work in a digital age: ethical and risk management challenges.
F. Reamer (2013)
Consumers' Perceptions of Patient-Accessible Electronic Medical Records
Christina Zarcadoolas (2013)
Access, Interest, and Attitudes Toward Electronic Communication for Health Care Among Patients in the Medical Safety Net
Adam Schickedanz (2012)
Pilot testing a digital pet avatar for older adults
Nai-Ching Chi (2017)
Conditional Entropy Based Retrieval Model in Patient-Carer Conversational Cases
M. Pavlidou (2017)
Smart phone apps: smart patients, steer clear.
Niamh M. Hogan (2012)
Barriers and Facilitators to Online Portal Use Among Patients and Caregivers in a Safety Net Health Care System: A Qualitative Study
L. Tieu (2015)
Participatory Genomic Research: Ethical Issues from the Bottom Up to the Top Down.
Heide Aungst (2017)
Making and using visual and audio recordings of patients
The Unintended Consequences of Social Media in Healthcare: New Problems and New Solutions.
S. Hors-Fraile (2016)
Healthcare information on YouTube: A systematic review
K. Madathil (2015)
Acceptance of Mobile Health in Communities Underrepresented in Biomedical Research: Barriers and Ethical Considerations for Scientists
Camille Nebeker (2017)
Mobile apps for psychiatric nurses.
Beth Elias (2014)
Security Recommendations for mHealth Apps: Elaboration of a Developer’s Guide
Enrique Pérez Morera (2016)
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. L. Bender (2017)
Patient-Perceived Facilitators of and Barriers to Electronic Portal Use: A Systematic Review.
Therapy in virtual environments--clinical and ethical issues.
P. Yellowlees (2012)
The urban underserved: attitudes towards gaining full access to electronic medical records
Shireesha Dhanireddy (2014)
The Free Encyclopedia
Handbook of Research on E-Learning Applications for Career and Technical Education: Technologies for Vocational Training
V. Wang (2009)
Crowdsourcing applications for public health.
Daren C. Brabham (2014)
Get Your Paws off of My Pixels: Personal Identity and Avatars as Self
M. Graber (2010)
Social media for radiologists: an introduction
E. Ranschaert (2015)
From patients to partners: participant-centric initiatives in biomedical research
J. Kaye (2012)
Electronic health records in the age of social networks and global telecommunications.
A. Shachak (2010)
Preferences for Internet-Based Mental Health Interventions in an Adult Online Sample: Findings From an Online Community Survey
P. Batterham (2017)
Development and Application of a Web-Based Nutritional Management Program to Improve Dietary Behaviors for the Prevention of Metabolic Syndrome
Yoon Choi (2014)
Social Media for the Promotion of Holistic Self-Participatory Care: An Evidence Based Approach. Contribution of the IMIA Social Media Working Group.
T. Miron-Shatz (2013)
Privacy and Security in Mobile Health Apps: A Review and Recommendations
Borja Martínez-Pérez (2014)
Online ethics: where will the interface of mental health and the internet lead us?
V. Cosgrove (2017)
Download Your Doctor: Implementation of a Digitally Mediated Personal Physician Presence to Enhance Patient Engagement With a Health-Promoting Internet Application
C. Lygidakis (2016)
An Interactive Website to Reduce Sexual Risk Behavior: Process Evaluation of TeensTalkHealth
S. Brady (2015)
Toward Exposing Timing-Based Probing Attacks in Web Applications †
J. Mao (2017)
From patient centred to people powered: autonomy on the rise
Dave deBronkart (2015)
Privacy and Security in Mobile Health: A Research Agenda
D. Kotz (2016)
The impact of personal dispositions on information sensitivity, privacy concern and trust in disclosing health information online
G. Bansal (2010)
Personal health and consumer informatics.
A. Guardia (2012)
Challenges in Assessing Mobile Health App Quality: A Systematic Review of Prevalent and Innovative Methods.
Q. Grundy (2016)
The landscape of research on smartphone medical apps: Coherent taxonomy, motivations, open challenges and recommendations
Muzammil Hussain (2015)
Patient - reported outcomes , patient - reported information : from randomized controlled trials to the social web and beyond
M Baldwin (2011)
mHealth: a mechanism to deliver more accessible, more effective mental health care.
M. Price (2014)
Balancing Benefits and Risks of Immortal Data: Participants' Views of Open Consent in the Personal Genome Project.
Oscar Zárate (2016)
Patient Portal Use and Experience Among Older Adults: Systematic Review
Dawn K Sakaguchi-Tang (2017)
The inevitable application of big data to health care.
T. Murdoch (2013)
Systematic review on what works, what does not work and why of implementation of mobile health (mHealth) projects in Africa
Clara B. Aranda-Jan (2014)
Intelligent Virtual Agents | SpringerLink
Design and Evaluation of a Web-Based Symptom Monitoring Tool for Heart Failure
B. Wakefield (2017)
Patient-Perceived Facilitators of and Barriers to Electronic Portal Use: A Systematic Review
Kimberly R Powell (2017)
IDGenerator: unique identifier generator for epidemiologic or clinical studies
M. Olden (2016)
Privacy and Security in Mobile Health : A Research Agen
D Kotz (2016)
Ethical Aspects of Using Medical Social Media in Healthcare Applications
K. Denecke (2014)
Personal Genome Projects: Global Network
The Meaning of Patient Empowerment in the Digital Age: The Role of Online Patient-Communities.
E. Lamas (2017)
Crowdsourcing Diagnosis for Patients With Undiagnosed Illnesses: An Evaluation of CrowdMed
Ashley N. D. Meyer (2016)
Elderly Healthcare Monitoring Using an Avatar-Based 3D Virtual Environment
Matti Pouke (2013)
The challenges in making electronic health records accessible to patients
L. Beard (2012)
Avatar-assisted therapy: a proof-of-concept pilot study of a novel technology-based intervention to treat substance use disorders
M. Gordon (2017)
Code and Other Laws of Cyberspace
L. Lessig (1999)
Informatics, evidence-based care, and research; implications for national policy: a report of an American Medical Informatics Association health policy conference
M. Bloomrosen (2010)
Wikipedia contributors . Avatar ( computing ) [ Internet ]
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
G. King (2017)
Mobile medical and health apps: state of the art, concerns, regulatory control and certification
M. K. Boulos (2014)
Health 2050: The Realization of Personalized Medicine through Crowdsourcing, the Quantified Self, and the Participatory Biocitizen
M. Swan (2012)
The Ethics of Sharing Plastic Surgery Videos on Social Media: Systematic Literature Review, Ethical Analysis, and Proposed Guidelines
Robert G. Dorfman (2017)
The project data sphere initiative: accelerating cancer research by sharing data.
A. Green (2015)
Free Open Access Meducation (FOAM): the rise of emergency medicine and critical care blogs and podcasts (2002–2013)
Mike D Cadogan (2014)
Engaging women with an embodied conversational agent to deliver mindfulness and lifestyle recommendations: A feasibility randomized control trial.
P. Gardiner (2017)
Making and using visual and audio recordings of patients
GM Crane (2009)
Crowdsourcing—Harnessing the Masses to Advance Health and Medicine, a Systematic Review
B. Ranard (2013)
The Rise of Crowdfunding for Medical Care: Promises and Perils.
M. J. Young (2017)
Pathology Image-Sharing on Social Media: Recommendations for Protecting Privacy While Motivating Education.
Genevieve M Crane (2016)
Availability and quality of mobile health app privacy policies
A. Sunyaev (2015)
Patient-reported outcomes, patient-reported information: from randomized controlled trials to the social web and beyond. Patient 2011;4(1):11–7
M Baldwin (2011)
Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness
G. Eysenbach (2008)
Avatar-mediated training in the delivery of bad news in a virtual world.
A. Andrade (2010)
An informatics research agenda to support patient and family empowerment and engagement in care and recovery during and after hospitalization
S. Collins (2018)
A review of privacy and usability issues in mobile health systems: Role of external factors
J. Katusiime (2019)
Personal health and consumer informatics. The impact of health oriented social media applications on health outcomes.
M. C. Gibbons (2013)
Ethical, legal and professional issues arising from social media coverage by UK Helicopter Emergency Medical Services
S. Steele (2015)
ePatients on YouTube: Analysis of Four Experiences From the Patients' Perspective
Beni Gómez-Zúñiga (2012)
This paper is referenced by
Unlocking the Power of Artificial Intelligence and Big Data in Medicine
C. Lovis (2019)
Abstract DPOC-005: #OVARIANCANCER: USING SOCIAL MEDIA TO FACILITATE HEALTH COMMUNICATION
Tara Coffin (2017)
Security and Privacy for mHealth and uHealth Systems: A Systematic Mapping Study
L. H. Iwaya (2020)
A Rapid Process for Identifying and Prioritizing Technology-Based Tools for Health System Implementation
Emily R Dibble (2018)
Research data management in health and biomedical citizen science: practices and prospects
A. Borda (2020)
Donor information in research and drug evaluation with induced pluripotent stem cells (iPSCs)
M. Orzechowski (2020)
Security and Privacy of mHealth Applications: A Scoping Review
L. Nurgalieva (2020)
Patients’ Willingness to Share Information in Online Patient Communities: Questionnaire Study
P. Zhu (2020)