Disposition toward privacy and information disclosure in the context of emerging health technologies.
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ABSTRACT:
SUBMITTER: Schairer CE
PROVIDER: S-EPMC6562158 | biostudies-literature | 2019 Jul
REPOSITORIES: biostudies-literature
Publications
Disposition toward privacy and information disclosure in the context of emerging health technologies.
Schairer Cynthia E CE Cheung Cynthia C Kseniya Rubanovich Caryn C Cho Mildred M Cranor Lorrie Faith LF Bloss Cinnamon S CS
Journal of the American Medical Informatics Association : JAMIA 20190701 7
<h4>Objective</h4>We sought to present a model of privacy disposition and its development based on qualitative research on privacy considerations in the context of emerging health technologies.<h4>Materials and methods</h4>We spoke to 108 participants across 44 interviews and 9 focus groups to understand the range of ways in which individuals value (or do not value) control over their health information. Transcripts of interviews and focus groups were systematically coded and analyzed in ATLAS.t ...[more]
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Project description:BackgroundAlong with the proliferation of health information technologies (HITs), there is a growing need to understand the potential privacy risks associated with using such tools. Although privacy policies are designed to inform consumers, such policies have consistently been found to be confusing and lack transparency.ObjectiveThis study aims to present consumer preferences for accessing privacy information; develop and apply a privacy policy risk assessment tool to assess whether existing HITs meet the recommended privacy policy standards; and propose guidelines to assist health professionals and service providers with understanding the privacy risks associated with HITs, so that they can confidently promote their safe use as a part of care.MethodsIn phase 1, participatory design workshops were conducted with young people who were attending a participating headspace center, their supportive others, and health professionals and service providers from the centers. The findings were knowledge translated to determine participant preferences for the presentation and availability of privacy information and the functionality required to support its delivery. Phase 2 included the development of the 23-item privacy policy risk assessment tool, which incorporated material from international privacy literature and standards. This tool was then used to assess the privacy policies of 34 apps and e-tools. In phase 3, privacy guidelines, which were derived from learnings from a collaborative consultation process with key stakeholders, were developed to assist health professionals and service providers with understanding the privacy risks associated with incorporating HITs as a part of clinical care.ResultsWhen considering the use of HITs, the participatory design workshop participants indicated that they wanted privacy information to be easily accessible, transparent, and user-friendly to enable them to clearly understand what personal and health information will be collected and how these data will be shared and stored. The privacy policy review revealed consistently poor readability and transparency, which limited the utility of these documents as a source of information. Therefore, to enable informed consent, the privacy guidelines provided ensure that health professionals and consumers are fully aware of the potential for privacy risks in using HITs to support health and well-being.ConclusionsA lack of transparency in privacy policies has the potential to undermine consumers' ability to trust that the necessary measures are in place to secure and protect the privacy of their personal and health information, thus precluding their willingness to engage with HITs. The application of the privacy guidelines will improve the confidence of health professionals and service providers in the privacy of consumer data, thus enabling them to recommend HITs to provide or support care.
| S-EPMC8485195 | biostudies-literature
Project description:BackgroundThe privacy of patients with mental health conditions is prominent in health information exchange (HIE) discussions, given that their potentially sensitive personal health information (PHI) may be electronically shared for various health care purposes. Currently, the patient privacy perspective in the mental health context is not well understood because of the paucity of in-depth patient privacy research; however, the evidence suggests that patient privacy perspectives are more nuanced than what has been assumed in the academic and health care community.ObjectiveThis study aimed to generate an understanding on how patients with mental health conditions feel about privacy in the context of HIE in Canada. This study also sought to identify the factors underpinning their privacy perspectives and explored how their perspectives influenced their attitudes toward HIE.MethodsSemistructured interviews were conducted with patients at a Canadian academic hospital for addictions and mental health. Guided by the Antecedent-Privacy Concern-Outcome macro-model, interview transcripts underwent deductive and inductive thematic analyses.ResultsWe interviewed 14 participants. Their privacy concerns varied, depending on the participant's privacy experiences and health care perceptions. Media reports of privacy breaches and hackers had little impact on participants' privacy concerns because of a fatalistic belief that privacy breaches are a reality in the digital age. Rather, direct observations and experiences with the mistreatment of PHI in health care settings caused concern. Decisions to trust others with PHI depended on past experiences with the individual (or institution) and health care needs. Participants had little knowledge of patient privacy rights and legislation but were willing to participate in HIE because of perceived individual and societal benefits.ConclusionsThis study introduces evidence that patients with mental health conditions would support HIE. Participants were pragmatic, supporting HIE because they wanted the best care possible. They also understood that their PHI was critical in supporting the single-payer Canadian health care system. Participant health care experiences informed their privacy perspectives, trust, and PHI sharing attitudes-all accentuating the importance of the patient experience in building trust in HIE. Their lack of knowledge about patient rights and PHI uses highlights the degree of trust they have in the health care system to protect their privacy. These findings suggest that the patient privacy discourse should extend beyond the oft-cited barrier of patient privacy concerns to include discussions about building trust, communicating the benefits of HIE, and improving patient experiences. Although our findings are in the Canadian context, this study highlights the importance of engaging patients in privacy policy discussions, regardless of jurisdiction, to ensure their nuanced perspectives are reflected in policy decisions on their PHI.
| S-EPMC6881785 | biostudies-literature
Project description:BackgroundMobile health (mHealth) provides a new opportunity for disease prediction and patient health self-management. However, privacy problems in mHealth have drawn significant attention to patients' online health information disclosure and to the possibility that privacy concerns may hinder mHealth development.ObjectivePrivacy calculus theory (PCT) has been widely used to understand personal information disclosure behaviors with the basic assumption of a rational and linear decision-making process. However, cognitive behavior processes are complex and mutual. In an attempt to gain a fuller understanding of information disclosure behavior, we further optimize a PCT-based information disclosure model by identifying the mutual relationship between costs (privacy concerns) and benefits. Social support, which has been proven to be a distinct and significant disclosure benefit of mHealth, was chosen as the representative benefit of information disclosure.MethodsWe examine a structural equation model that incorporates privacy concerns, health information disclosure intention in mHealth, and social support from mHealth, all at the individual level.ResultsA validated questionnaire was completed by 253 randomly selected participants. The result indicated that perceived health information sensitivity positively enhances patients' privacy concern (beta path coefficient 0.505, P<.001), and higher privacy concern levels will decrease their health information disclosure intention (beta path coefficient -0.338, P<.001). Various individual characteristics influence perceived health information sensitivity in different ways. One dimension of social support, informational support, negatively moderates the effect of the relationship between perceived health information sensitivity and privacy concerns (beta path coefficient -0.171, P=.092) and the effect of the relationship between privacy concerns and health information disclosure intention (beta path coefficient -0.105, P=.092). However, another dimension, emotional support, has no direct moderation effect on the relationship between privacy concerns and health information disclosure intention.ConclusionsThe results indicate that social support can be regarded as a disutility reducer. That is, on the one hand, it reduces patients' privacy concerns; on the other hand, it also reduces the negative impact of privacy concerns on information disclosure intention. Moreover, the moderation effect of social support is partially supported. Informational support, one dimension of social support, is significant (beta path coefficient -0.171, P=.092), while the other dimension, emotional support, is not significant (beta path coefficient -0.137, P=.146), in mHealth. Furthermore, the results are different among patients with different individual characteristics. This study also provides specific theoretical and practical implications to enhance the development of mHealth.
| S-EPMC7899802 | biostudies-literature
Project description:ObjectiveDigital nudging has been mooted as a tool to alter user privacy behavior. However, empirical studies on digital nudging have yielded divergent results: while some studies found nudging to be highly effective, other studies found no such effects. Furthermore, previous studies employed a wide range of digital nudges, making it difficult to discern the effectiveness of digital nudging. To address these issues, we performed a systematic review of empirical studies on digital nudging and information disclosure as a specific privacy behavior.MethodThe search was conducted in five digital libraries and databases: Scopus, Google Scholar, ACM Digital Library, Web of Science, and Science Direct for peer-reviewed papers published in English after 2006, examining the effects of various nudging strategies on disclosure of personal information online.ResultsThe review unveiled 78 papers that employed four categories of nudge interventions: presentation, information, defaults, and incentives, either individually or in combination. A meta-analysis on a subset of papers with available data (n = 54) revealed a significant small-to-medium sized effect of the nudge interventions on disclosure (Hedges' g = 0.32). There was significant variation in the effectiveness of nudging (I2 = 89%), which was partially accounted for by interventions to increase disclosure being more effective than interventions to reduce disclosure. No evidence was found for differences in the effectiveness of nudging with presentation, information, defaults, and incentives interventions.ConclusionIdentifying ways to nudge users into making more informed and desirable privacy decisions is of significant practical and policy value. There is a growing interest in digital privacy nudges for disclosure of personal information, with most empirical papers focusing on nudging with presentation. Further research is needed to elucidate the relative effectiveness of different intervention strategies and how nudges can confound one another.
| S-EPMC8396794 | biostudies-literature
Project description:OBJECTIVES:To survey international regulatory frameworks that serve to protect privacy of personal data as a human right as well as to review the literature regarding privacy protections and data ownership in mobile health (mHealth) technologies between January 1, 2016 and June 1, 2019 in order to identify common themes. METHODS:We performed a review of relevant literature available in English published between January 1, 2016 and June 1, 2019 from databases including PubMed, Google Scholar, and Web of Science, as well as relevant legislative background material. Articles out of scope (as detailed below) were eliminated. We categorized the remaining pool of articles and discrete themes were identified, specifically: concerns around data transmission and storage, including data ownership and the ability to re-identify previously de-identified data; issues with user consent (including the availability of appropriate privacy policies) and access control; and the changing culture and variable global attitudes toward privacy of health data. RESULTS:Recent literature demonstrates that the security of mHealth data storage and transmission remains of wide concern, and aggregated data that were previously considered "de-identified" have now been demonstrated to be re-identifiable. Consumer-informed consent may be lacking with regard to mHealth applications due to the absence of a privacy policy and/or to text that is too complex and lengthy for most users to comprehend. The literature surveyed emphasizes improved access control strategies. This survey also illustrates a wide variety of global user perceptions regarding health data privacy. CONCLUSION:The international regulatory framework that serves to protect privacy of personal data as a human right is diverse. Given the challenges legislators face to keep up with rapidly advancing technology, we introduce the concept of a "healthcare fiduciary" to serve the best interest of data subjects in the current environment.
| S-EPMC7442507 | biostudies-literature
Project description:BACKGROUND:When a genetic mutation is identified in a family member (proband), internationally, it is usually the proband's or another responsible family member's role to disclose the information to at-risk relatives. However, both active and passive non-disclosure in families occurs: choosing not to communicate the information or failing to communicate the information despite intention to do so, respectively. The ethical obligations to prevent harm to at-risk relatives and promote the duty of care by genetic health professionals (GHPs) is in conflict with Privacy laws and professional regulations that prohibits disclosure of information to a third party without the consent of the proband (duty of confidentiality). In New South Wales (NSW), Australia, amendments to Privacy legislation permits such disclosure to living genetic relatives with the process defined under guidelines although there is no legal duty to warn. This study assessed NSW GHP's awareness and experience of the legislation and guidelines. METHODS:An online survey collected demographics; theoretical knowledge; clinical scenarios to assess application knowledge; attitudes; confidence; experience with active non-disclosure. A link to correct answers was provided after completion. Knowledge scores above the median for non-parametric data or above the mean for parametric data were classified as 'good' or 'poor'. Chi square tests assessed associations between confidence and knowledge scores. RESULTS:While many of the 37 participants reported reading the guidelines, there was limited awareness of their scope and clinical application; that there is no legal duty to warn; and that the threat does not need to be imminent to warrant disclosure. No association between confidence and 'good' theoretical or applied clinical knowledge was identified. Uncertainty of their professional responsibility was identified and in the several case examples of active non-disclosure that were reported this uncertainty reflected the need for further understanding of the guidelines in regard to the processes required before disclosure was initiated. CONCLUSIONS:There is a need for further education and training about the guidelines associated with the legislation that would be relevant to support disclosure. The findings may inform future strategies to support introduction of policy changes in other jurisdictions where similar regulatory regimes are introduced.
| S-EPMC7001268 | biostudies-literature
Project description:Driven by data proliferation, digital technologies have transformed the marketing landscape. In parallel, significant privacy concerns have shaken consumer-firm relationships, prompting changes in both regulatory interventions and people's own privacy-protective behaviors. With a comprehensive analysis of digital technologies and data strategy informed by structuration theory and privacy literature, the authors consider privacy tensions as the product of firm-consumer interactions, facilitated by digital technologies. This perspective in turn implies distinct consumer, regulatory, and firm responses related to data protection. By consolidating various perspectives, the authors propose three tenets and seven propositions, supported by interview insights from senior managers and consumer informants, that create a foundation for understanding the digital technology implications for firm performance in contexts marked by growing privacy worries and legal ramifications. On the basis of this conceptual framework, they also propose a data strategy typology across two main strategic functions of digital technologies: data monetization and data sharing. The result is four distinct types of firms, which engage in disparate behaviors in the broader ecosystem pertaining to privacy issues. This article also provides directions for research, according to a synthesis of findings from both academic and practical perspectives.
| S-EPMC8897618 | biostudies-literature
Project description:The number of older adults with cancer is increasing. Over the past 3 decades, geriatric oncology research has focused on improving the assessment of frailty and fitness of older adults with cancer as well as methods of improving their outcomes. At the same time, advances in digital health technologies have opened new frontiers for reaching this goal. Digital health technologies encompass a variety of solutions, from electronic patient-reported outcomes (ePROs) to Big Data and wireless sensors. These solutions have the potential to further advance our understanding of patients' experiences during cancer treatment. Whereas the data on the feasibility and utility of such solutions in the care of older adults with cancer are limited, interest from digital health oncology researchers to further explore the benefits of these products is increasing. In this article, we describe the focus of geriatric oncology, the rationale behind the need to explore digital health technologies in this setting, and emerging data and ongoing studies, as well as provide guidelines for proper selection, implementation, and testing of digital health solutions in the context of geriatric oncology.
| S-EPMC7370237 | biostudies-literature
Project description:ObjectiveThe objective of this research is to empirically explore the drivers of patients' consent to sharing of their medical records on health information exchange (HIE) platforms.Materials and methodsThe authors analyze a dataset consisting of consent choices of 20,076 patients in Western New York. A logistic regression is applied to empirically investigate the effects of patients' age, gender, complexity of medical conditions, and the role of primary care physicians on patients' willingness to disclose medical information on HIE platforms.ResultsThe likelihood of providing consent increases by age (odds ratio (OR) = 1.055; P < .0001). Female patients are more likely to provide consent (OR = 1.460; P = .0003). As the number of different physicians involved in the care of the patient increases, the odds of providing consent slightly increases (OR = 1.024; P = .0031). The odds of providing consent is significantly higher for the patients whom a primary care physician has been involved in their medical care (OR = 1.323; P < .0001).ConclusionIndividual-level characteristics are important predictors of patients' willingness to disclose their medical information on HIE platforms.
| S-EPMC7784317 | biostudies-literature
Project description:ImportanceDigital health information has many potential health applications, but privacy is a growing concern among consumers and policy makers. Consent alone is increasingly seen as inadequate to safeguard privacy.ObjectiveTo determine whether different privacy protections are associated with consumers' willingness to share their digital health information for research, marketing, or clinical uses.Design, setting, and participantsThis 2020 national survey with an embedded conjoint experiment recruited US adults from a nationally representative sample with oversampling of Black and Hispanic individuals. Willingness to share digital information across 192 different scenarios reflecting the product of 4 possible privacy protections, 3 uses of information, 2 users of information, and 2 sources of digital information was evaluated. Each participant was randomly assigned 9 scenarios. The survey was administrated between July 10 and July 31, 2020, in Spanish and English. Analysis for this study was conducted between May 2021 and July 2022.Main outcomes and measuresParticipants rated each conjoint profile on a 5-point Likert scale measuring their willingness to share their personal digital information (with 5 indicating the most willingness to share). Results are reported as adjusted mean differences.ResultsOf the 6284 potential participants, 3539 (56%) responded to the conjoint scenarios. A total of 1858 participants (53%) were female, 758 (21%) identified as Black, 833 (24%) identified as Hispanic, 1149 (33%) had an annual income less than $50 000, and 1274 (36%) were 60 years or older. Participants were more willing to share health information with the presence of each individual privacy protection, including consent (difference, 0.32; 95% CI, 0.29-0.35; P < .001), followed by data deletion (difference, 0.16; 95% CI, 0.13-0.18; P < .001), oversight (difference, 0.13; 95% CI, 0.10-0.15; P < .001), and transparency of data collected (difference, 0.08; 95% CI, 0.05-0.10; P < .001). The relative importance (importance weight on a 0%-100% scale) was greatest for the purpose of use (29.9%) but when considered collectively, the 4 privacy protections together were the most important (51.5%) factor in the conjoint experiment. When the 4 privacy protections were considered separately, consent was the most important (23.9%).Conclusions and relevanceIn this survey study of a nationally representative sample of US adults, consumers' willingness to share personal digital health information for health purposes was associated with the presence of specific privacy protections beyond consent alone. Additional protections, including data transparency, oversight, and data deletion may strengthen consumer confidence in sharing their personal digital health information.
| S-EPMC9982693 | biostudies-literature