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 Linking First Nations data to administrative health data within Manitoba

2018 ◽  
Vol 3 (4) ◽  
Author(s):  
Venkata Shravan Ramayanam ◽  
Leona Star
Keyword(s):  
First Nations ◽  
Health Information ◽  
Personal Health Information ◽  
Personal Health ◽  
Data Governance ◽  
Information Research ◽  
University Of Manitoba ◽  
Manitoba Health ◽  
First Time ◽  
Administrative Datasets

IntroductionFirst Nation peoples (FNs) were unable to track their own health care trends due to limitations in datasets. The key linked file enables FNs to identify themselves within administrative datasets and work with Crown governments to bring equity in all services and departments to support FNs understanding of wellness. Objectives and ApproachFirst Nations Health and Social Secretariat of Manitoba (FNHSSM) was established by 2013 resolution of Assembly of Manitoba Chiefs (AMC) and incorporated in 2014. FNHSSM leads and supports research according to FNs criteria approved by the Chiefs in Assembly. Information Sharing Agreements (ISA) have been developed with federal and provincial governments to mandate the processes for data linkage. The ISA allows Indian Status Register (ISR) data of Department of Indigenous Services Canada (DISC) to be transferred to FNHSSM to provide oversight, and link to Provincial Personal Health Information Numbers (PHINs) to create the de-identified, scrambled, and encrypted Key Linked file. ResultsPrevious linkages were done in early 2000s with FNs approval and oversight. The 2018 linkage is the first time that ISAs have been formally developed. ISA-1 is between FNHSSM and Manitoba Health Seniors and Active Living (MHSAL) to create Key Linked file. ISA-2 is between FNHSSM, MHSAL and Manitoba Centre for Health Policy (MCHP) at University of Manitoba, to create the FNs Research File. This research file can only be accessed with application to and approval by the MFNs Health Information Research Governance Committee. This key linked file allows FNHSSM to prepare community health profiles specifically and only for each FN, to respect FNs Data Governance under Chief and Council. A regional report on Manitoba FNs will be created for all MFNs, FNHSSM and MHSAL. Conclusion/ImplicationsLinking datasets helps to strengthen FNs data governance in re-building nations, recognizing FNs inherent right to self-determination. Linking files help to provide meaningful data to advocate for FNs rights and access to the resources and social determinants of health needed to achieve equity in Manitoba.

From health to performance

2019 ◽  
Vol 71 (2) ◽  
pp. 217-240 ◽  
Author(s):  
Yuanyuan Feng ◽  
Denise E. Agosto
Keyword(s):  
Health Information ◽  
Information Management ◽  
Information Science ◽  
Personal Health Information ◽  
Personal Health ◽  
Activity Tracking ◽  
Content Type ◽  
Activity Tracker ◽  
Future Activity ◽  
Tracking Technology

PurposeBuilding on theoretical foundation of personal information management (PIM) in information science, this paper seeks to understand how activity tracker users manage their personal health information generated by their devices and to elucidate future activity tracking technology in support of personal health information management (PHIM). This paper aims to discuss this issue.Design/methodology/approachThe authors conducted a web survey study with a specific group of activity tracker users – amateur runners. This survey collected both quantitative and qualitative data on participants’ engagement with activity tracking technology, their PHIM practices with the information generated by the technology and how their needs were being met by their activity tracking technology use and PHIM practices.FindingsAmateur runners surveyed in this study exhibit long-term engagement and frequent interaction with activity tracking technology. They also engage in PHIM practices by using a range of PHIM tools and performing various PHIM activities. Furthermore, they use activity tracking technology and engage in PHIM practices to meet various health/fitness-related needs and information needs, while some of these needs such as performance needs and overarching needs are only partially met or unmet.Originality/valueThis research discusses amateur runners as power users of activity tracking technology, provides timely updates to PIM and PHIM research in light of a new type of personal health information, and generates design considerations for future activity tracking technology in support of PHIM. It also brings together previously disparate research regarding everyday life PHIM in information science, human–computer interaction and health informatics.

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.

Using the technology acceptance model to predict patient attitude toward personal health records in regional communities

2018 ◽  
Vol 31 (2) ◽  
pp. 306-326 ◽  
Author(s):  
Jamil Razmak ◽  
Charles Bélanger
Keyword(s):  
Technology Acceptance ◽  
Health Information ◽  
Technology Acceptance Model ◽  
Personal Health Records ◽  
Personal Health Information ◽  
Personal Health ◽  
Canadian Study ◽  
Health Records ◽  
Content Type ◽  
Acceptance Model

Purpose The purpose of this paper is to statistically measure (quantify) how a sample of Canadians perceives the usability of electronic personal health records (PHRs) and, in the process, to increase Canadian patients’ awareness of PHRs and improve physicians’ confidence in their patients’ ability to manage their own health information through PHRs. Design/methodology/approach The authors surveyed 325 Canadian patients living in Northern Ontario to assess a research model consisting of seven perceptions of PHR systems used to manage personal health information electronically, and to assess their perceived ability to use PHR systems. The survey questions were adapted from the 2014 National Physician Survey in Canada. The authors compared the patients’ results with physicians’ own perceptions of their patients’ ability to use PHR systems. Findings First, there was a positive relationship between surveyed patients’ prior experiences, needs, values, and their attitude toward adopting the PHR system. Second, how patients saw a PHR system’s user-friendliness was the strongest predictor of how useful they considered it would be. Finally, of the 243 physician respondents, 90.3 percent believed their patients would not be able to manage their own e-health information via a PHR system, but 54.8 percent of the 325 patient respondents indicated they would be able to do so. Originality/value This study is unique in that the authors know of no other Canadian study that purports to predict, using the technology acceptance model factors, people’s attitudes toward adopting a PHR system. As well, this is the first Canadian study to compare the perspectives of healthcare providers and their patients on e-health applications.

scholarly journals Willingness to share personal health information: impact of attitudes, trust and control

2021 ◽  
Vol ahead-of-print (ahead-of-print) ◽  
Author(s):  
Jari Juga ◽  
Jouni Juntunen ◽  
Timo Koivumäki
Keyword(s):  
Health Care ◽  
Information Sharing ◽  
Health Information ◽  
Structural Equation ◽  
Personal Information ◽  
Personal Health Information ◽  
Equation Modeling ◽  
Personal Health ◽  
Content Type ◽  
And Control

Purpose This study aims to explicate the behavioral factors that determine willingness to share personal health data for secondary uses. Design/methodology/approach A theoretical model is developed and tested with structural equation modeling using survey data from Finland. Findings It is shown that attitude toward information sharing is the strongest factor contributing to the willingness to share personal health information (PHI). Trust and control serve as mediating factors between the attitude and willingness to share PHI. Research limitations/implications The measures of the model need further refinement to cover the various aspects of the behavioral concepts. Practical implications The model provides useful insights into the factors that affect the willingness for information sharing in health care and in other areas where personal information is distributed. Social implications Sharing of PHI for secondary purposes can offer social benefits through improvements in health-care performance. Originality/value A broad-scale empirical data gives a unique view of attitudes toward sharing of PHI in one national setting.

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.

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.

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