Improving home-like environments in long-term care units: an exploratory mixed-method study.

Although the number of older adults requiring care is rapidly increasing, nursing homes have long faced issues such as the absence of a home-like environment. This exploratory mixed-method study investigated how residents (n = 15) in a long-term care unit in South Korea perceive home-like features and privacy in their living spaces. The results indicated that most participants were satisfied with the homeliness and privacy of their environment, but some were unhappy with the level of privacy. Most participants had low scores on the Geriatric Depression Scale and the Pittsburgh Sleep Quality Index, indicating low levels of depression and sleep disorders. Sleep quality was affected by factors such as sensory environment, staff visits, and room temperature. Although participants appreciated social support and private rooms, they expressed a desire for larger rooms. Overall, this study provides preliminary insights into older adults' views on their living spaces in long-term care with implications for improving their quality of life.

The Dead Unborn, Postmortem Privacy Cases, and Abortion Rights.

The privacy of the dead is an interesting area of concern for bioethicists. There is a legal doctrine that the dead can't have privacy rights, but also a body of contrary law ascribing privacy rights to the deceased and kin in relation to the deceased. As women's abortion privacy is under assault by American courts and legislatures, the implications of ascribing privacy rights to embryos and fetuses is more important than ever. Caution is called for in this domain.

Privacy-preserving blockchain-based federated learning for brain tumor segmentation.

Improved data sharing between healthcare providers can lead to a higher probability of accurate diagnosis, more effective treatments, and enhanced capabilities of healthcare organizations. One critical area of focus is brain tumor segmentation, a complex task due to the heterogeneous appearance, irregular shape, and variable location of tumors. Accurate segmentation is essential for proper diagnosis and effective treatment planning, yet current techniques often fall short due to these complexities. However, the sensitive nature of health data often prohibits its sharing. Moreover, the healthcare industry faces significant issues, including preserving the privacy of the model and instilling trust in the model. This paper proposes a framework to address these privacy and trust issues by introducing a mechanism for training the global model using federated learning and sharing the encrypted learned parameters via a permissioned blockchain. The blockchain-federated learning algorithm we designed aggregates gradients in the permissioned blockchain to decentralize the global model, while the introduced masking approach retains the privacy of the model parameters. Unlike traditional raw data sharing, this approach enables hospitals or medical research centers to contribute to a globally learned model, thereby enhancing the performance of the central model for all participating medical entities. As a result, the global model can learn about several specific diseases and benefit each contributor with new disease diagnosis tasks, leading to improved treatment options. The proposed algorithm ensures the quality of model data when aggregating the local model, using an asynchronous federated learning procedure to evaluate the shared model's quality. The experimental results demonstrate the efficacy of the proposed scheme for the critical and challenging task of brain tumor segmentation. Specifically, our method achieved a 1.99% improvement in Dice similarity coefficient for enhancing tumors and a 19.08% reduction in Hausdorff distance for whole tumors compared to the baseline methods, highlighting the significant advancement in segmentation performance and reliability.

Collaborative learning from distributed data with differentially private synthetic data.

BACKGROUND: Consider a setting where multiple parties holding sensitive data aim to collaboratively learn population level statistics, but pooling the sensitive data sets is not possible due to privacy concerns and parties are unable to engage in centrally coordinated joint computation. We study the feasibility of combining privacy preserving synthetic data sets in place of the original data for collaborative learning on real-world health data from the UK Biobank. METHODS: We perform an empirical evaluation based on an existing prospective cohort study from the literature. Multiple parties were simulated by splitting the UK Biobank cohort along assessment centers, for which we generate synthetic data using differentially private generative modelling techniques. We then apply the original study's Poisson regression analysis on the combined synthetic data sets and evaluate the effects of 1) the size of local data set, 2) the number of participating parties, and 3) local shifts in distributions, on the obtained likelihood scores. RESULTS: We discover that parties engaging in the collaborative learning via shared synthetic data obtain more accurate estimates of the regression parameters compared to using only their local data. This finding extends to the difficult case of small heterogeneous data sets. Furthermore, the more parties participate, the larger and more consistent the improvements become up to a certain limit. Finally, we find that data sharing can especially help parties whose data contain underrepresented groups to perform better-adjusted analysis for said groups. CONCLUSIONS: Based on our results we conclude that sharing of synthetic data is a viable method for enabling learning from sensitive data without violating privacy constraints even if individual data sets are small or do not represent the overall population well. Lack of access to distributed sensitive data is often a bottleneck in biomedical research, which our study shows can be alleviated with privacy-preserving collaborative learning methods.

The Ninth Amendment: An Underutilized Protection for Reproductive Choice.

Concern about individual rights and the desire to protect them has been part of our nation since its founding, and continues to be so today. The Ninth Amendment was created to assuage the Framers' concerns that enumerating some rights in the Bill of Rights would leave unenumerated rights unrecognized and unprotected, affirming that those rights are not disparaged or denied by their lack of textual support. The Ninth Amendment has appeared infrequently in our jurisprudence, and Courts initially construed it rather narrowly. But starting in the 1960s, the Ninth Amendment emerged as a powerful tool not just for recognizing unanticipated rights, but for protecting or expanding even enumerated rights. The right to privacy--encompassing the right to contraception and abortion--the right to preserve the integrity of your family, the right to vote, the right to own a firearm as an individual--all these rights have been asserted under and found to be supported by the Ninth Amendment. In its Dobbs v. Jackson Women's Health decision overturning Roe, the Supreme Court found that there is no right to abortion because it is not in the Constitution. But the potential of the Ninth Amendment is such that reproductive choice need not be mentioned in the Constitution to be protected. Reproductive choice may rightfully be considered as part of a right to privacy, an unenumerated right that nevertheless has abundant precedent behind it. The Ninth Amendment, and its counterparts found in many state constitutions, has the power to protect not just reproductive choice, but all of our fundamental rights.

Without Due Process of Law: The Dobbs Decision and Its Cataclysmic Impact on the Substantive Due Process and Privacy Rights of Ohio Women.

Since the overturning of prior abortion precedents in Dobbs v. Jackson Women's Health Organization, there has been a question on the minds of many women in this country: how will this decision affect me and my rights? As we have seen in the aftermath of Dobbs, many states have pushed for stringent anti-abortion measures seeking to undermine the foundation on which women's reproductive freedom had been grounded on for decades. This includes right here in Ohio, where Republican lawmakers have advocated on numerous occasions for implementing laws seeking to limit abortion rights, including a 6-week abortion ban advocated for and passed by the Ohio Republican legislature and signed into law by Ohio Governor Mike DeWine. Despite this particular ban being successfully challenged and stayed, significant problems persist regarding due process rights for women in Ohio, particularly in the aftermath of Justice Thomas's concurrence in Dobbs advising the Court to revisit prior precedents, such as Griswold v. Connecticut providing for the right to contraception. If the Court were to revisit and strike down Griswold, it would further undermine privacy and due process rights that have been granted to women across this country, including here in Ohio, for decades. Justice Thomas's concurrence, while merely dicta, encapsulates a Court that has become increasingly hostile to treasured fundamental rights for women, a hostility mirrored in numerous Republican legislatures, including right here in Ohio.

Evaluating bias and noise induced by the U.S. Census Bureau's privacy protection methods.

The U.S. Census Bureau faces a difficult trade-off between the accuracy of Census statistics and the protection of individual information. We conduct an independent evaluation of bias and noise induced by the Bureau's two main disclosure avoidance systems: the TopDown algorithm used for the 2020 Census and the swapping algorithm implemented for the three previous Censuses. Our evaluation leverages the Noisy Measurement File (NMF) as well as two independent runs of the TopDown algorithm applied to the 2010 decennial Census. We find that the NMF contains too much noise to be directly useful without measurement error modeling, especially for Hispanic and multiracial populations. TopDown's postprocessing reduces the NMF noise and produces data whose accuracy is similar to that of swapping. While the estimated errors for both TopDown and swapping algorithms are generally no greater than other sources of Census error, they can be relatively substantial for geographies with small total populations.

Supported Privacy: An Essential Principle for End-of-Life Care for Children and Families in the PICU.

Caring for children and their families at the end-of-life is an essential but challenging aspect of care in the PICU. During and following a child's death, families often report a simultaneous need for protected privacy and ongoing supportive presence from staff. Balancing these seemingly paradoxical needs can be difficult for PICU staff and can often lead to the family feeling intruded upon or abandoned during their end-of-life experience. In this "Pediatric Critical Care Medicine Perspectives" piece, we reframe provision of privacy at the end-of-life in the PICU and describe an essential principle that aims to help the interprofessional PICU team simultaneously meet these two opposing family needs: "Supported Privacy." In addition, we offer concrete recommendations to actualize "Supported Privacy" in the PICU, focusing on environmental considerations, practical needs, and emotional responses. By incorporating the principles of "Supported Privacy" into end-of-life care practices, clinicians can support the delivery of high-quality care that meets the needs of children and families navigating the challenges and supports of end-of-life in the PICU.

Patients' Perspectives on the Data Confidentiality, Privacy, and Security of mHealth Apps: Systematic Review.

BACKGROUND: Mobile health (mHealth) apps have the potential to enhance health care service delivery. However, concerns regarding patients' confidentiality, privacy, and security consistently affect the adoption of mHealth apps. Despite this, no review has comprehensively summarized the findings of studies on this subject matter. OBJECTIVE: This systematic review aims to investigate patients' perspectives and awareness of the confidentiality, privacy, and security of the data collected through mHealth apps. METHODS: Using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines, a comprehensive literature search was conducted in 3 electronic databases: PubMed, Ovid, and ScienceDirect. All the retrieved articles were screened according to specific inclusion criteria to select relevant articles published between 2014 and 2022. RESULTS: A total of 33 articles exploring mHealth patients' perspectives and awareness of data privacy, security, and confidentiality issues and the associated factors were included in this systematic review. Thematic analyses of the retrieved data led to the synthesis of 4 themes: concerns about data privacy, confidentiality, and security; awareness; facilitators and enablers; and associated factors. Patients showed discordant and concordant perspectives regarding data privacy, security, and confidentiality, as well as suggesting approaches to improve the use of mHealth apps (facilitators), such as protection of personal data, ensuring that health status or medical conditions are not mentioned, brief training or education on data security, and assuring data confidentiality and privacy. Similarly, awareness of the subject matter differed across the studies, suggesting the need to improve patients' awareness of data security and privacy. Older patients, those with a history of experiencing data breaches, and those belonging to the higher-income class were more likely to raise concerns about the data security and privacy of mHealth apps. These concerns were not frequent among patients with higher satisfaction levels and those who perceived the data type to be less sensitive. CONCLUSIONS: Patients expressed diverse views on mHealth apps' privacy, security, and confidentiality, with some of the issues raised affecting technology use. These findings may assist mHealth app developers and other stakeholders in improving patients' awareness and adjusting current privacy and security features in mHealth apps to enhance their adoption and use. TRIAL REGISTRATION: PROSPERO CRD42023456658; https://tinyurl.com/ytnjtmca.

Changing US Support for Public Health Data Use Through Pandemic and Political Turmoil.

Policy Points This study examines the impact of several world-changing events in 2020, such as the pandemic and widespread racism protests, on the US population's comfort with the use of identifiable data for public health. Before the 2020 election, there was no significant difference between Democrats and Republicans. However, African Americans exhibited a decrease in comfort that was different from other subgroups. Our findings suggest that the public remained supportive of public health data activities through the pandemic and the turmoil of 2020 election cycle relative to other data use. However, support among African Americans for public health data use experienced a unique decline compared to other demographic groups. CONTEXT: Recent legislative privacy efforts have not included special provisions for public health data use. Although past studies documented support for public health data use, several global events in 2020 have raised awareness and concern about privacy and data use. This study aims to understand whether the events of 2020 affected US privacy preferences on secondary uses of identifiable data, focusing on public health and research uses. METHODS: We deployed two online surveys-in February and November 2020-on data privacy attitudes and preferences using a choice-based-conjoint analysis. Participants received different data-use scenario pairs-varied by the type of data, user, and purpose-and selected scenarios based on their comfort. A hierarchical Bayes regression model simulated population preferences. FINDINGS: There were 1,373 responses. There was no statistically significant difference in the population's data preferences between February and November, each showing the highest comfort with population health and research data activities and the lowest with profit-driven activities. Most subgroups' data preferences were comparable with the population's preferences, except African Americans who showed significant decreases in comfort with population health and research. CONCLUSIONS: Despite world-changing events, including a pandemic, we found bipartisan public support for using identifiable data for public health and research. The decreasing support among African Americans could relate to the increased awareness of systemic racism, its harms, and persistent disparities. The US population's preferences support including legal provisions that permit public health and research data use in US laws, which are currently lacking specific public health use permissions.

Encrypted data-sharing for preserving privacy in wastewater-based epidemiology.

The rapidly expanding use of wastewater for public health surveillance requires new strategies to protect privacy rights, while data are collected at increasingly discrete geospatial scales, i.e., city, neighborhood, campus, and building-level. Data collected at high geospatial resolution can inform on labile, short-lived biomarkers, thereby making wastewater-derived data both more actionable and more likely to cause privacy concerns and stigmatization of subpopulations. Additionally, data sharing restrictions among neighboring cities and communities can complicate efforts to balance public health protections with citizens' privacy. Here, we have created an encrypted framework that facilitates the sharing of sensitive population health data among entities that lack trust for one another (e.g., between adjacent municipalities with different governance of health monitoring and data sharing). We demonstrate the utility of this approach with two real-world cases. Our results show the feasibility of sharing encrypted data between two municipalities and a laboratory, while performing secure private computations for wastewater-based epidemiology (WBE) with high precision, fast speeds, and low data costs. This framework is amenable to other computations used by WBE researchers including population normalized mass loads, fecal indicator normalizations, and quality control measures. The Centers for Disease Control and Prevention's National Wastewater Surveillance System shows ∼8 % of the records attributed to collection before the wastewater treatment plant, illustrating an opportunity to further expand currently limited community-level sampling and public health surveillance through security and responsible data-sharing as outlined here.

Balancing public health and group privacy: Ethics, rights, and obligations for wastewater surveillance systems.

As the threat of COVID-19 recedes, wastewater surveillance - unlike other pandemic-era public health surveillance methods - seems here to stay. Concerns have been raised, however, about the potential risks that wastewater surveillance might pose towards group privacy. Existing scholarship has focused upon using ethics- or human rights-based frameworks as a means of balancing the public health objectives of wastewater surveillance and the potential risks it might pose to group privacy. However, such frameworks greatly lack enforceability. In order to further the strong foundation laid by such frameworks - while addressing their lack of enforceability - this paper proposes the idea of the 'obligation' as an alternative way to regulate wastewater surveillance systems. The legal codification of said obligations provides a method of ensuring that wastewater surveillance systems can be deployed effectively and equitably. Our paper proposes that legal obligations for wastewater surveillance can be created and enforced through transparent and purposeful legislation (which would include limits on power and grant institutions substantial oversight) as well as paying heed to non-legislative legal means of enforcement, such as through courts or contracts. Introducing legal obligations for wastewater surveillance could therefore be highly useful to researchers, policymakers, corporate technologists, and government agencies working in this field.

Generating Synthetic Health Sensor Data for Privacy-Preserving Wearable Stress Detection.

Smartwatch health sensor data are increasingly utilized in smart health applications and patient monitoring, including stress detection. However, such medical data often comprise sensitive personal information and are resource-intensive to acquire for research purposes. In response to this challenge, we introduce the privacy-aware synthetization of multi-sensor smartwatch health readings related to moments of stress, employing Generative Adversarial Networks (GANs) and Differential Privacy (DP) safeguards. Our method not only protects patient information but also enhances data availability for research. To ensure its usefulness, we test synthetic data from multiple GANs and employ different data enhancement strategies on an actual stress detection task. Our GAN-based augmentation methods demonstrate significant improvements in model performance, with private DP training scenarios observing an 11.90-15.48% increase in F1-score, while non-private training scenarios still see a 0.45% boost. These results underline the potential of differentially private synthetic data in optimizing utility-privacy trade-offs, especially with the limited availability of real training samples. Through rigorous quality assessments, we confirm the integrity and plausibility of our synthetic data, which, however, are significantly impacted when increasing privacy requirements.

When Parents Request Nondisclosure: Rights of Adolescents to Access Their Health Information and Implications of the 21st Century Cures Act Final Rule.

AbstractDespite broad ethical consensus supporting developmentally appropriate disclosure of health information to older children and adolescents, cases in which parents and caregivers request nondisclosure continue to pose moral dilemmas for clinicians. State laws vary considerably regarding adolescents' rights to autonomy, privacy, and confidentiality, with many states not specifically addressing adolescents' right to their own healthcare information. The requirements of the 21st Century Cures Act have raised important ethical concerns for pediatricians and adolescent healthcare professionals regarding the protection of adolescent privacy and confidentiality, given requirements that chart notes and results be made readily available to patients via electronic portals. Less addressed have been the implications of the act for adolescents' access to their health information, since many healthcare systems' electronic portals are available to patients beginning at age 12, sometimes requiring that the patients themselves authorize their parents' access to the same information. In this article, we present a challenging case of protracted disagreement about an adolescent's right to honest information regarding his devastating prognosis. We then review the legal framework governing adolescents' rights to their own healthcare information, the limitations of ethics consultation to resolve such disputes, and the potential for the Cures Act's impact on electronic medical record systems to provide one form of resolution. We conclude that although parents in cases like the one presented here have the legal right to consent to medical treatment on their children's behalf, they do not have a corresponding right to direct the withholding of medical information from the patient.

Privacy Barriers in Health Monitoring: Scoping Review.

BACKGROUND: Health monitoring technologies help patients and older adults live better and stay longer in their own homes. However, there are many factors influencing their adoption of these technologies. Privacy is one of them. OBJECTIVE: The aim of this study was to provide an overview of the privacy barriers in health monitoring from current research, analyze the factors that influence patients to adopt assisted living technologies, provide a social psychological explanation, and propose suggestions for mitigating these barriers in future research. METHODS: A scoping review was conducted, and web-based literature databases were searched for published studies to explore the available research on privacy barriers in a health monitoring environment. RESULTS: In total, 65 articles met the inclusion criteria and were selected and analyzed. Contradictory findings and results were found in some of the included articles. We analyzed the contradictory findings and provided possible explanations for current barriers, such as demographic differences, information asymmetry, researchers' conceptual confusion, inducible experiment design and its psychological impacts on participants, researchers' confirmation bias, and a lack of distinction among different user roles. We found that few exploratory studies have been conducted so far to collect privacy-related legal norms in a health monitoring environment. Four research questions related to privacy barriers were raised, and an attempt was made to provide answers. CONCLUSIONS: This review highlights the problems of some research, summarizes patients' privacy concerns and legal concerns from the studies conducted, and lists the factors that should be considered when gathering and analyzing people's privacy attitudes.

Integrating blockchain and ZK-ROLLUP for efficient healthcare data privacy protection system via IPFS.

With the rapid development of modern medical technology and the dramatic increase in the amount of medical data, traditional centralized medical information management is facing many challenges. In recent years blockchain, which is a peer-to-peer distributed database, has been increasingly accepted and adopted by different industries and use cases. Key areas of healthcare blockchain applications include electronic medical record (EMR) management, medical device supply chain management, remote condition monitoring, insurance claims and personal health data (PHD) management, among others. Even so, there are a number of challenges in applying blockchain concepts to healthcare and its data, including interoperability, data security privacy, scalability, TPS and so on. While these challenges may hinder the development of blockchain in healthcare scenarios, they can be improved with existing technologies In this paper, we propose a blockchain-based healthcare operations management framework that is combined with the Interplanetary File System (IPFS) for managing EMRs, protects data privacy through a distributed approach while ensuring that this medical ledger is tamper-proof. Doctors act as full nodes, patients can participate in network maintenance either as light nodes or as full nodes, and the hospital acts as the endpoint database of data, i.e., the IPFS node, which saves the arithmetic power of nodes and allows the data stored in the hospitals and departments to be shared with the other organizations that have uploaded the data. Therefore, the integration of blockchain and zero-knowledge proof proposed in this paper helps to protect data privacy and is efficient, better scalable, and more throughput.

A strategy to balance location privacy and positioning accuracy.

In privacy protection methods based on location services, constructing anonymous areas using location information shared by collaborative users is the main method. However, this collaborative process not only increases the risk of mobile users' location privacy being leaked, but also reduces positioning accuracy. In response to this problem, we propose a balancing strategy, which transforms the problem of protecting mobile users' location privacy and improving positioning accuracy into a balance issue between location privacy and positioning accuracy. The cooperation of mobile users with different collaborating users is then modeled as an objective optimization problem, and location privacy and positioning accuracy are evaluated separately to make different selection strategies. Finally, an optimization function is constructed to select the optimal selection strategies. Experimental results show that our proposed strategy can effectively achieve the balance between location privacy and positioning accuracy.

Navigating privacy and security in telemedicine for primary care.

OBJECTIVE: To examine patient and provider perspectives on privacy and security considerations in telemedicine during the COVID-19 pandemic. STUDY DESIGN: Qualitative study with patients and providers from primary care practices in 3 National Patient-Centered Clinical Research Network sites in New York, New York; North Carolina; and Florida. METHODS: Semistructured interviews were conducted, audio recorded, transcribed verbatim, and coded using an inductive process. Data related to privacy and information security were analyzed. RESULTS: Sixty-five patients and 21 providers participated. Patients and providers faced technology-related security concerns as well as difficulties ensuring privacy in the transformed shared space of telemedicine. Patients expressed increased comfort doing telemedicine from home but often did not like their providers to offer virtual visits from outside an office setting. Providers initially struggled to find secure and Health Insurance Portability and Accountability Act-compliant platforms and devices to host the software. Whereas some patients preferred familiar platforms such as FaceTime, others recognized potential security concerns. Audio-only encounters sometimes raised patient concerns that they would not be able to confirm the identity of the provider. CONCLUSIONS: Telemedicine led to novel concerns about privacy because patients and providers were often at home or in public spaces, and they shared concerns about software and hardware security. In addition to technological safeguards, our study emphasizes the critical role of physical infrastructure in ensuring privacy and security. As telemedicine continues to evolve, it is important to address and mitigate concerns around privacy and security to ensure high-quality and safe delivery of care to patients in remote settings.

COMMENTARY: Protecting healthcare privacy: Analysis of data protection developments in India.

Patient privacy is essential and so is ensuring confidentiality in the doctor-patient relationship. However, today's reality is that patient information is increasingly accessible to third parties outside this relationship. This article discusses India's data protection framework and assesses data protection developments in India including the Digital Personal Data Protection Act, 2023.