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.

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.

Provably Secure Data Sharing Approach for Personal Health Records in Cloud Storage Using Session Password, Data Access Key, and Circular Interpolation

2021 ◽  
Vol 17 (4) ◽  
pp. 76-98
Author(s):  
Naveen John ◽  
Shatheesh Sam
Keyword(s):  
Health Information ◽  
Data Sharing ◽  
Cloud Storage ◽  
High Efficiency ◽  
Personal Health Record ◽  
Data Access ◽  
Personal Health Information ◽  
Personal Health ◽  
Secure Data ◽  
Circular Interpolation

Personal health record (PHR) system has become the most important platform to exchange health information, in which the patients can share and manage personal health information more effectively in cloud storage. However, the cloud server is unreliable, and the secure data of users may be disclosed. Therefore, a secure data sharing mechanism is developed in this research using the proposed session password, data access key, and circular interpolation (SKC)-based data-sharing approach for the secure sharing of PHR in the cloud. The proposed SKC-based data sharing approach provides high efficiency and high-security guarantee. It effectively satisfies various security properties, such as tamper resistance, openness, and decentralization. The proposed SKC-based data sharing approach is the reliable mechanism created for the doctors to share the PHR and to access the patient historical data while meeting the privacy preservation.

Applying Personal Health Informatics to Create Effective Patient-Centered E-Health

2011 ◽  
pp. 344-359
Author(s):  
E. Vance Wilson
Keyword(s):  
Health Informatics ◽  
Healthcare Services ◽  
Personal Health Records ◽  
Consumer Health Informatics ◽  
Personal Health ◽  
Consumer Health ◽  
Healthcare Organizations ◽  
Patient Centered ◽  
Alternative Approach ◽  
Health Applications

E-health use is increasing worldwide, but no current e-health paradigm fulfills the complete range of users’ needs for Web-enabled healthcare services. Moreover, a number of obstacles exist that could make it difficult for e-health to meet users’ expectations, especially in the case where the users are patients. These dilemmas cloud the future of e-health, as promoters of e-commerce, personal health records, and consumer health informatics paradigms vie to create e-health applications while being hampered by the implicit constraints of each perspective. This chapter presents an alternative approach for designing and developing e-health titled personal health informatics (PHI). PHI was developed to overcome the limitations of preceding paradigms while incorporating their best features. The chapter goes on to describe how PHI can be applied to create effective patient-centered e-health for delivery by healthcare organizations to their own patients.

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 Present and Future Trends in Consumer Health Informatics and Patient-Generated Health Data

2017 ◽  
Vol 26 (01) ◽  
pp. 152-159 ◽  
Author(s):  
A. M. Lai ◽  
P.-Y. S. Hsueh ◽  
Y. K. Choi ◽  
R. R. Austin
Keyword(s):  
Digital Library ◽  
Mobile Health ◽  
Health Informatics ◽  
Health Data ◽  
Current Evidence ◽  
Consumer Health Informatics ◽  
Consumer Health ◽  
Health Technologies ◽  
Widespread Availability ◽  
The Impact

Summary Objectives: Consumer Health Informatics (CHI) and the use of Patient-Generated Health Data (PGHD) are rapidly growing focus areas in healthcare. The objective of this paper is to briefly review the literature that has been published over the past few years and to provide a sense of where the field is going. Methods: We searched PubMed and the ACM Digital Library for articles published between 2014 and 2016 on the topics of CHI and PGHD. The results of the search were screened for relevance and categorized into a set of common themes. We discuss the major topics covered in these articles. Results: We retrieved 65 articles from our PubMed query and 32 articles from our ACM Digital Library query. After a review of titles, we were left with 47 articles to conduct our full article survey of the activities in CHI and PGHD. We have summarized these articles and placed them into major categories of activity. Within the domain of consumer health informatics, articles focused on mobile health and patient-generated health data comprise the majority of the articles published in recent years. Conclusions: Current evidence indicates that technological advancements and the widespread availability of affordable consumer-grade devices are fueling research into using PGHD for better care. As we observe a growing number of (pilot) developments using various mobile health technologies to collect PGHD, major gaps still exist in how to use the data by both patients and providers. Further research is needed to understand the impact of PGHD on clinical outcomes.

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