Beyond a “Take It” or “Leave It” Approach to eConsent Design on Health Social Networks

2020 ◽  
Vol 10 (2) ◽  
pp. 31-51
Author(s):  
Wendy Rowan ◽  
Yvonne O'Connor ◽  
Laura Lynch ◽  
Ciara Heavin
Keyword(s):  
Social Networks ◽  
Health Information ◽  
Data Storage ◽  
Health Data ◽  
Personal Health Information ◽  
Personal Health ◽  
Privacy Policy ◽  
Software Developers ◽  
Highly Sensitive

With the proliferation of eHealth resources promoting health data storage, analysis, and dissemination, it is important for individuals to understand the implications of sharing their highly sensitive personal health information (PHI) online. However, uncertainty remains about the level of individual awareness and understanding when sharing PHI on health social networks (HSN). This article explores individuals' emotion and cognition in the provision of eConsent for PHI on a HSN focusing on individual engagement of emotion pre- and post-registration. Prior to participants reading the HSN's privacy policy (PP) and terms and conditions (T&Cs), a ‘just click' behavior was widely observed. This article shows that educating users about the implications of T&Cs and PPs changes their attitudes toward giving eConsent. By exploring individual emotion and cognition, this study proposes guidelines for software developers designing eConsent for HSNs.

Governance of artificial intelligence and personal health information

2019 ◽  
Vol 21 (3) ◽  
pp. 280-290 ◽  
Author(s):  
Jenifer Sunrise Winter ◽  
Elizabeth Davidson
Keyword(s):  
Artificial Intelligence ◽  
Machine Learning ◽  
Health Information ◽  
Health Data ◽  
Personal Health Information ◽  
System Level ◽  
Personal Health ◽  
Data Governance ◽  
Privacy Regulation ◽  
Content Type

Purpose This paper aims to assess the increasing challenges to governing the personal health information (PHI) essential for advancing artificial intelligence (AI) machine learning innovations in health care. Risks to privacy and justice/equity are discussed, along with potential solutions. Design/methodology/approach This conceptual paper highlights the scale and scope of PHI data consumed by deep learning algorithms and their opacity as novel challenges to health data governance. Findings This paper argues that these characteristics of machine learning will overwhelm existing data governance approaches such as privacy regulation and informed consent. Enhanced governance techniques and tools will be required to help preserve the autonomy and rights of individuals to control their PHI. Debate among all stakeholders and informed critique of how, and for whom, PHI-fueled health AI are developed and deployed are needed to channel these innovations in societally beneficial directions. Social implications Health data may be used to address pressing societal concerns, such as operational and system-level improvement, and innovations such as personalized medicine. This paper informs work seeking to harness these resources for societal good amidst many competing value claims and substantial risks for privacy and security. Originality/value This is the first paper focusing on health data governance in relation to AI/machine learning.

scholarly journals Legal and Regulatory Considerations Associated with Use of Patient-Generated Health Data from Social Media and Mobile Health (mHealth) Devices

2015 ◽  
Vol 06 (01) ◽  
pp. 16-26 ◽  
Author(s):  
P. DeMuro ◽  
C. Petersen
Keyword(s):  
Social Media ◽  
Health Information ◽  
Mobile Health ◽  
Rapid Evolution ◽  
Health Data ◽  
Personal Health Information ◽  
Great Promise ◽  
Personal Health ◽  
Clinical Settings ◽  
Mobile Health Apps

SummaryPatient-generated health data are coming into broader use across the health care spectrum and hold great promise as a means to improve care and health outcomes. At the same time, rapid evolution in the social media and mobile health (mHealth) market has promoted an environment in which creation and transmission of personal health information is easy, quick, and appealing to patients. However, adoption of social media and mHealth by providers is hampered by legal and regulatory concerns with regard to data ownership and data use. This article defines common forms of patient-generated health data (PGHD) and describes how PGHD is used in clinical settings. It explores issues related to protection of personal health information, including that of children and adolescents, data security, and other potential barriers such as physician licensure. It also discusses regulatory and legal considerations providers and patients should consider before using social media and mobile health apps.Citation: Petersen C, DeMuro P. Legal and regulatory considerations associated with use of patient-generated health data from social media and mobile health (mHealth) devices. Appl Clin Inf 2015; 6: 16–26http://dx.doi.org/10.4338/ACI-2014-09-R-0082

scholarly journals Access and Disclosure of Personal Health Information: A Challenging Privacy Landscape in 2016-2018

2018 ◽  
Vol 27 (01) ◽  
pp. 060-066
Author(s):  
Linda Kloss ◽  
Melanie Brodnik ◽  
Laurie Rinehart-Thompson
Keyword(s):  
Health Information ◽  
Management Practices ◽  
Public Policies ◽  
Data Access ◽  
Health Data ◽  
Personal Health Information ◽  
Personal Health ◽  
Privacy Management ◽  
Patient Privacy ◽  
Disclosure Management

Objectives: To assess the current health data access and disclosure environment for potential privacy-protecting mechanisms that enable legitimate use of personal health information while preserving the rights of individuals. To identify the gaps and challenges between increasing requests and expanding uses of such information and the regulations, technologies, and management practices that permit appropriate access and disclosure while guarding against harmful misuse of such information. Methods: A scoping literature review focused on (1) regulations affecting access and disclosure of personal health information, (2) the uses of health information that challenge access and disclosure boundaries, and (3) privacy management practices that may help mitigate gaps in protecting patient privacy. Results: Countries and jurisdictions are developing laws, regulations, and public policies to balance the privacy rights of individuals and the unprecedented opportunities to advance health and health care through expanded uses of health data. Regulations and guidance are evolving, but they are outpaced by the increasing demand for and the challenges of managing access and disclosure. Mechanisms such as consent and authorization may not always be adequate. Mechanisms that advance principled stewardship are more important than ever. Conclusions: Access and disclosure management are important dimensions of privacy management practices. This is a volatile period in which diverging public policies may reveal how best to balance access and disclosure of personal health information by individuals and by institutional custodians of the information. Approaches to access and disclosure management, including the roles of individuals, should be a focus for research and study in the years ahead.

scholarly journals Findings from 2017 on Consumer Health Informatics and Education: Health Data Access and Sharing

2018 ◽  
Vol 27 (01) ◽  
pp. 163-169 ◽  
Author(s):  
Pascal Staccini ◽  
Annie Lau ◽  
Keyword(s):  
Health Information ◽  
Data Sharing ◽  
Health Informatics ◽  
Data Access ◽  
Health Data ◽  
Demographic Characteristics ◽  
Personal Health Information ◽  
Consumer Health Informatics ◽  
Personal Health ◽  
Consumer Health

Objective: To summarize the state of the art during the year 2017 in consumer health informatics and education, with a special emphasis on sharing health data and accessing personal health information (PHI) from patients' and consumers' perspective. Methods: We conducted a systematic search of articles published in PubMed using a predefined set of queries which identified 228 potential articles for review. The section editors then screened these articles according to topic relevance and selected 15 candidate best papers for full review and scoring by a panel of international experts. Based on the scores and the reviews, four papers received the highest score and were selected in a consensus meeting as the best papers on health data access and sharing from consumers' and patients' perspective. Results: These four papers were categorised into the following topics: 1) data sharing for research and governance in privacy protection; 2) use of personal health information and individual privacy concerns; and 3) consumers' views and demographic characteristics regarding health data sharing and the use of digital health portals. Overall, it was surprising to see only a small number of papers reporting original research in this area. Conclusions: Patients understand the need for sharing information to facilitate best care and to enrich biomedical knowledge. When confronted with the reality of accessing information systems for their own information, patients are concerned about usability as well as privacy. Overall, there is a need for more emphasis on: 1) considering privacy as a feature defined by design; 2) using specific consent approaches and data sharing mechanisms for recruiting clinical trial participants; 3) taking into account socio-demographic characteristics when promoting consumer access to personal health information; and 4) defining indicators of high-quality care to incorporate healthcare professionals' level of caution when accessing patients' medical information and fostering patient trust in data exchange. Ultimately, privacy mechanisms should be part of the design process and not only be implemented when security has been breached and violated.

How Research Will Adapt to HIPAA: A View from Within the Healthcare Delivery System

2002 ◽  
Vol 28 (4) ◽  
pp. 491-502
Author(s):  
Mary L. Durham
Keyword(s):  
Health Information ◽  
Healthcare Delivery ◽  
Healthcare Providers ◽  
The United States ◽  
Personal Health Information ◽  
Personal Health ◽  
Business Associations ◽  
Electronic Information ◽  
Healthcare Delivery System ◽  
Institutional Review

While the new Health Insurance Privacy and Accountability Act (HIPAA) research rules governing privacy, confidentiality and personal health information will challenge the research and medical communities, history teaches us that the difficulty of this challenge pales in comparison to the potential harms that such regulations are designed to avoid. Although revised following broad commentary from researchers and healthcare providers around the country, the HIPAA privacy requirements will dramatically change the way healthcare researchers do their jobs in the United States. Given our reluctance to change, we risk overlooking potentially valid reasons why access to personal health information is restricted and regulated. In an environment of electronic information, public concern, genetic information and decline of public trust, regulations are ever-changing. Six categories of HIPAA requirements stand out as transformative: disclosure accounting/tracking, business associations, institutional review board (IRB) changes, minimum necessary requirements, data de-identification, and criminal and civil penalties.

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