Integrating Health and Disability Data Into Academic Information Systems: Workflow Optimization Study.

Background: Integrating health information into university information systems holds significant potential for enhancing student support and well-being. Despite the growing body of research highlighting issues faced by university students, including stress, depression, and disability, little has been done in the informatics field to incorporate health technologies at the institutional level. Objective: This study aims to investigate the current state of health information integration within university systems and provide design recommendations to address existing gaps and opportunities. Methods: We used a user-centered approach to conduct interviews and focus group sessions with stakeholders to gather comprehensive insights and requirements for the system. The methodology involved data collection, analysis, and the development of a suggested workflow. Results: The findings of this study revealed the shortcomings in the current process of handling health and disability data within university information systems. In our results, we discuss some requirements identified for integrating health-related information into student information systems, such as privacy and confidentiality, timely communication, task automation, and disability resources. We propose a workflow that separates the process into 2 distinct components: a health and disability system and measures of quality of life and wellness. The proposed workflow highlights the vital role of academic advisors in facilitating support and enhancing coordination among stakeholders. Conclusions: To streamline the workflow, it is vital to have effective coordination among stakeholders and redesign the university information system. However, implementing the new system will require significant capital and resources. We strongly emphasize the importance of increased standardization and regulation to support the information system requirements for health and disability. Through the adoption of standardized practices and regulations, we can ensure the smooth and effective implementation of the required support system.

Simplifying Multiparty Computation: A Client-Driven Metaprotocol for Federated Secure Computing.

INTRODUCTION: Secure Multi-Party Computation (SMPC) offers a powerful tool for collaborative healthcare research while preserving patient data privacy. STATE OF THE ART: However, existing SMPC frameworks often require separate executions for each desired computation and measurement period, limiting user flexibility. CONCEPT: This research explores the potential of a client-driven metaprotocol for the Federated Secure Computing (FSC) framework and its SImple Multiparty ComputatiON (SIMON) protocol as a step towards more flexible SMPC solutions. IMPLEMENTATION: This client-driven metaprotocol empowers users to specify and execute multiple calculations across diverse measurement periods within a single client-side code execution. This eliminates the need for repeated code executions and streamlines the analysis process. The metaprotocol offers a user-friendly interface, enabling researchers with limited cryptography expertise to leverage the power of SMPC for complex healthcare analyses. LESSONS LEARNED: We evaluate the performance of the client-driven metaprotocol against a baseline iterative approach. Our evaluation demonstrates performance improvements compared to traditional iterative approaches, making this metaprotocol a valuable tool for advancing secure and efficient collaborative healthcare research.

Understanding the Perspectives of Hail City Population on the Confidentiality and Privacy of Digital Health and Medical Information.

Background In the era of rapid digital advancement, the confidentiality and privacy of digital health and medical data have become paramount concerns. This study investigates the perspectives of individuals residing in Hail City regarding these critical issues, with a particular emphasis on the influence of demographic factors such as age, gender, and computer proficiency on individuals' discomfort with health professionals using computers and their trust in researchers. Gaining a deeper understanding of these factors is vital for the development of targeted interventions aimed at enhancing patient comfort and trust in digital health/medical technologies. Methodology This study employed a descriptive cross-sectional design, involving a survey of 775 individuals aged 18 and above in Hail City. The questionnaire was designed to gather information on participants' demographic characteristics, computer proficiency, experiences with digital health and medical information, and perceptions of health information safety and privacy. To examine the associations and predictive relationships between variables, chi-square tests, correlation analyses, and logistic regression were performed. Results Significant associations were found between gender and discomfort with health professionals using computers (chi-square = 60.29, p < 0.0001), and between age and trust in researchers regarding the privacy of medical information (chi-square = 50.14, p < 0.0001). Positive correlations were observed between computer proficiency and perception of health information safety (r = 0.12, p = 0.0002), while a negative correlation was found between computer ownership and avoidance of medical tests due to privacy concerns (r = -0.08, p = 0.03). Logistic regression analysis identified age, gender, and computer proficiency as significant predictors of discomfort with health professionals using computers. The findings highlight the crucial role that demographic factors play in shaping attitudes toward the privacy and security of digital health and medical information. Conclusions The findings of this study highlight the crucial role that demographic factors play in shaping attitudes toward the privacy and security of digital health and medical information. Gender and age were found to significantly influence individuals' levels of discomfort and trust, while computer proficiency was shown to enhance perceptions of safety. Based on these findings, the researchers recommend implementing targeted interventions, such as gender-sensitive training programs and initiatives, to enhance digital literacy and improve patient comfort and trust in digital health technologies.

Balancing confidentiality and care coordination: challenges in patient privacy.

BACKGROUND: In the digital age, maintaining patient confidentiality while ensuring effective care coordination poses significant challenges for healthcare providers, particularly nurses. AIM: To investigate the challenges and strategies associated with balancing patient confidentiality and effective care coordination in the digital age. METHODS: A cross-sectional study was conducted in a general hospital in Egypt to collect data from 150 nurses across various departments with at least six months of experience in patient care. Data were collected using six tools: Demographic Form, HIPAA Compliance Checklist, Privacy Impact Assessment (PIA) Tool, Data Sharing Agreement (DSA) Framework, EHR Privacy and Security Assessment Tool, and NIST Cybersecurity Framework. Validity and Reliability were ensured through pilot testing and factor analysis. RESULTS: Participants were primarily aged 31-40 years (45%), with 75% female and 60% staff nurses. High compliance was observed in the HIPAA Compliance Checklist, especially in Administrative Safeguards (3.8 ± 0.5), indicating strong management and training processes, with an overall score of 85 ± 10. The PIA Tool showed robust privacy management, with Project Descriptions scoring 4.5 ± 0.3 and a total score of 30 ± 3. The DSA Framework had a mean total score of 20 ± 2, with Data Protection Measures scoring highest at 4.0 ± 0.4. The EHR assessments revealed high scores in Access Controls (4.4 ± 0.3) and Data Integrity Measures (4.3 ± 0.3), with an overall score of 22 ± 1.5. The NIST Cybersecurity Framework had a total score of 18 ± 2, with the highest scores in Protect (3.8) and lower in Detect (3.6). Strong positive correlations were found between HIPAA Compliance and EHR Privacy (r = 0.70, p < 0.05) and NIST Cybersecurity (r = 0.55, p < 0.05), reflecting effective data protection practices. CONCLUSION: The study suggests that continuous improvement in privacy practices among healthcare providers, through ongoing training and comprehensive privacy frameworks, is vital for enhancing patient confidentiality and supporting effective care coordination.

Ethical considerations for real-world evidence studies.

Real-world evidence (RWE) studies are conducted on patient's data primarily collected for monitoring of health status of patients. The use of real-world data to generate evidence in academic research or for regulatory submission raises a variety of ethical issues such as privacy, confidentiality, data protection, data de-identification, data sharing, scientific design of study, and informed consent requirements. The investigators-researchers and sponsors should adhere to current standards of ethics whilst planning and conduct of RWE studies. The ethics committees should consider ethical issues specific to RWE studies before approval.

Putting patients at the center of health information exchange design: An exploration of patient preferences for data sharing.

BACKGROUND: Despite the many benefits of Health Information Exchange (HIE), Studies reported patients concerns about the privacy and security of sharing their health information. To address these concerns, it is important to understand their needs, preferences, and priorities in the design and implementing HIE systems. OBJECTIVE: The aim of this study is to investigate patients' preferences for HIE consent option and examine the extent to which they are comfortable sharing the different parts of their medical records. METHOD: A self-administered survey was conducted. The survey was administrated online and the total number of respondents was 660 participants. RESULTS: The most popular option selected by participants for sharing HIE information was to share information with their permission once when they register (33.3%) followed by the option to share their information temporarily on demand during their clinical visit (23.8%). The types of information which participants were willing to share the most were general data such as age, weight, height, and gender, followed closely by data needed for medical emergency. In contrast, the information which participants were less likely to share were data related to financial status or income, followed by data related to sexual disease, and mental illnesses.

Breaching Confidentiality in Genetic and Non-Genetic Cases: Two Problematic Distinctions.

Ethical questions about confidentiality arise when patients refuse to inform relatives who are at risk of a genetic condition. Specifically, healthcare providers may struggle with the permissibility of breaching confidentiality to warn patients' at-risk relatives. In exploring this issue, several authors have converged around the idea that genetic cases differ from non-genetic cases (e.g., involving a threat of violence or the spread of an infectious disease) along two related dimensions: (1) In genetic cases, the risk of harm is already present in an at-risk third party, whereas in non-genetic cases, it is not; and (2) In genetic cases, the patient does not create a risk of harm to a third party, whereas in non-genetic cases, the patient does. I argue that these distinctions do not exclusively differentiate genetic from non-genetic cases and should not bear on the permissibility of breaching confidentiality. Instead, such determinations should be based on other considerations.

A lantern-shaped fluorescent probe based on viologen/polyoxometalate for the detection of Ag+ in beverages and daily necessities.

A lantern-shaped viologen/polyoxometalate (POM)-based compound [NiII(MSBP)2(H2O)2]·(ß-Mo8O26)·H2O (Ni-POM) (MSBP = 1-(4-Methanesulfonyl-benzyl)-[4,4']bipyridinyl-1-ium) was successfully synthesized by a hydrothermal method for the efficient detection of Ag+. A strong affinity between Ag+ and SO in the viologen component of the Ni-POM structure made them interact, which led to blue fluorescence quenching. In the concentration range of 0.1-4 µM, a strong linear relationship was observed between the Ag+concentration and the fluorescence intensity ratio of Ni-POM, and the limit of detection (LOD) was 20.4 nM. Considering the widespread presence of Ag+ in various water sources, daily necessities and food preservatives, the utilization of Ni-POM for detecting the concentration of Ag+ in real samples (water, daily necessities and beverages) was proved to be highly effective. Moreover, a remarkable recovery rate ranging from 95.70 % to 103.60 % was achieved, indicating that the monitoring results of practical samples were satisfactory. A fluorescent ink based on Ni-POM was designed for the purpose of information confidentiality. More importantly, the hydrogel intelligent device for visual detection of Ag+ was developed, which could realize visual real-time on-site quantitative detection of Ag+ concentration in beverages and daily necessities. Therefore, Ni-POM provides an effective platform for the development of visually quantitative detection of Ag+ in food and daily necessities.

A Physical-Layer Security Cooperative Framework for Mitigating Interference and Eavesdropping Attacks in Internet of Things Environments.

Intentional electromagnetic interference attacks (e.g., jamming) against wireless connected devices such as the Internet of Things (IoT) remain a serious challenge, especially as such attacks evolve in complexity. Similarly, eavesdropping on wireless communication channels persists as an inherent vulnerability that is often exploited by adversaries. This article investigates a novel approach to enhancing information security for IoT systems via collaborative strategies that can effectively mitigate attacks targeting availability via interference and confidentiality via eavesdropping. We examine the proposed approach for two use cases. First, we consider an IoT device that experiences an interference attack, causing wireless channel outages and hindering access to transmitted IoT data. A physical-layer-based security (PLS) transmission strategy is proposed in this article to maintain target levels of information availability for devices targeted by adversarial interference. In the proposed strategy, select IoT devices leverage a cooperative transmission approach to mitigate the IoT signal outages under active interference attacks. Second, we consider the case of information confidentiality for IoT devices as they communicate over wireless channels with possible eavesdroppers. In this case, we propose a collaborative transmission strategy where IoT devices create a signal outage for the eavesdropper, preventing it from decoding the signal of the targeted devices. The analytical and numerical results of this article illustrate the effectiveness of the proposed transmission strategy in achieving desired IoT security levels with respect to availability and confidentiality for both use cases.

Use of an electronic wellness instrument in the integrated health and social care of older adults: a group concept mapping study.

BACKGROUND: Health system fragmentation directly contributes to poor health and social outcomes for older adults with multiple chronic conditions and their care partners. Older adults often require support from primary care, multiple specialists, home care, community support services, and other health-care sectors and communication between these providers is unstructured and not standardized. Integrated and interprofessional team-based models of care are a recommended strategy to improve health service delivery to older adults with complex needs. Standardized assessment instruments deployed on digital platforms are considered a necessary component of integrated care. The aim of this study was to develop strategies to leverage an electronic wellness instrument, interRAI Check Up Self Report, to support integrated health and social care for older adults and their care partners in a community in Southern Ontario, Canada. METHODS: Group concept mapping, a participatory mixed-methods approach, was conducted. Participants included older adults, care partners, and representatives from: home care, community support services, specialized geriatric services, primary care, and health informatics. In a series of virtual meetings, participants generated ideas to implement the interRAI Check Up and rated the relative importance of these ideas. Hierarchical cluster analysis was used to map the ideas into clusters of similar statements. Participants reviewed the map to co-create an action plan. RESULTS: Forty-one participants contributed to a cluster map of ten action areas (e.g., engagement of older adults and care partners, instrument's ease of use, accessibility of the assessment process, person-centred process, training and education for providers, provider coordination, health information integration, health system decision support and quality improvement, and privacy and confidentiality). The health system decision support cluster was rated as the lowest relative importance and the health information integration was cluster rated as the highest relative importance. CONCLUSIONS: Many person-, provider-, and system-level factors need to be considered when implementing and using an electronic wellness instrument across health- and social-care providers. These factors are highly relevant to the integration of other standardized instruments into interprofessional team care to ensure a compassionate care approach as technology is introduced.

Qualitative insights into mental health treatment through telemedicine during the COVID-19 crisis: a natural experiment in community mental health centers.

BACKGROUND: The COVID-19 pandemic exacerbated existing mental health challenges and introduced new ones, particularly among vulnerable populations such as individuals within the criminal justice system, who disproportionately experienced employment, financial, and housing issues. As mandatory lockdowns and social distancing mandates were implemented, the United States saw unprecedented interruptions to treatment. Telemedicine emerged as a transformative tool in alleviating new and existing treatment barriers. Yet, limited empirical research has examined the impact and implications of telemedicine on mental health treatment in criminal justice populations. METHODS: The timing of this study's data collection overlapped with the spread of COVID-19 in the United States and provided a unique opportunity to examine the impact of telemedicine as part of a natural experiment. Utilizing interviews with 61 community mental health center service providers, this study qualitatively examined service providers' experiences in treating criminal justice-involved individuals with serious mental illness who were receiving mental health treatment through telemedicine. RESULTS: Service providers expressed satisfaction with telemedicine in addressing client transportation and childcare barriers while increasing engagement. Service providers voiced new concerns regarding clients' confidentiality, digital literacy, and limitations to gathering non-verbal client information during virtual treatment. CONCLUSIONS: Mental health treatment offered through telemedicine mitigates barriers to treatment that disproportionately affect criminal justice clients. Despite its benefits, challenges like access to reliable internet and to internet-enabled devices, confidentiality concerns, and information gathering must be addressed to achieve optimal and equitable mental health treatment through telemedicine. The findings support the continued use of telemedicine in mental health treatment delivery for this population.

Evaluation of an interactive education workshop on hospital pharmacists' ethical reasoning: an observational study.

BACKGROUND: Pharmacists are often faced with scenarios in practice that require application of ethical reasoning and decision-making skills. There is limited research on the ethical decision-making processes of hospital pharmacists. Pharmacists who are compassionate and put the interests of their patients first are thought to positively impact on patient care, but there are often complex health-care system pressures in the hospital setting that cause pharmacists to behave in ways that may conflict with professional values and behaviours. This multisite study aimed to evaluate an interactive education workshop on hospital pharmacists' ethical reasoning skills and explore the need for ongoing training and support. METHODS: This mixed-methods study was carried out across two health services including three hospitals. It incorporated a pre-workshop survey, a feedback survey immediately post-workshop and a third survey four weeks after the workshop. Semi-structured interviews were conducted with hospital pharmacists at least four weeks after the ethics workshop. RESULTS: In total, 32 participants completed the pre-workshop survey, nominating peers/colleagues as the most common source of support they would consult to inform ethical decision-making (17/118 sources of support). Almost all (n = 31/33; 94%) strongly agreed/agreed that the education session provided them with ethical reasoning skills and a process/framework which they could use when faced with an ethical issue. Pre- and post-survey responses showed increased self-confidence in identifying the regulatory frameworks applicable to pharmacy privacy requirements (p = 0.011) and ethical issues applicable to pharmacy privacy requirements (p = 0.002), as well as applying ethical reasoning to scenarios that involve pharmacy privacy dilemmas/issues (p = 0.004). Participants' self confidence in knowing where to find support when faced with clinical and non-clinical ethics questions was improved (p = 0.002 and p = 0.003 respectively). Participants supported the introduction of quarterly ethics cafes after the workshop, compared to before the workshop (p = 0.001). CONCLUSION: Hospital pharmacists rely on discussions with colleagues to brainstorm how to address ethical issues. This study showed that a targeted interactive education workshop facilitated familiarity with ethics resources and decision-making processes. It also demonstrated that this approach could be used to enhance hospital pharmacists' readiness, confidence, and capabilities to recognise and respond to challenging ethical issues.

Legislation strengthening Maternal and Perinatal Death Surveillance and Response systems.

Historically, countries have primarily relied on policy rather than legislation to implement Maternal and Perinatal Death Surveillance and Response systems (MPDSR). However, evidence shows significant disparities in how MPDSR is implemented among different countries. In this article, we argue for the importance of establishing MPDSR systems mandated by law and aligned with the country's constitutional provisions, regional and international human rights obligations, and public health commitments. We highlight how a "no blame" approach can be regulated to provide a balance between confidentiality of the system and access to justice and remedies.

Ethical considerations during Mpox Outbreak: a scoping review.

BACKGROUND: Historically, epidemics have been accompanied by the concurrent emergence of stigma, prejudice, and xenophobia. This scoping review aimed to describe and map published research targeting ethical values concerning monkeypox (mpox). In addition, it aimed to understand the research gaps related to mpox associated stigma. METHODS: We comprehensively searched databases (PubMed Central, PubMed Medline, Scopus, Web of Science, Ovid, and Google Scholar) to identify published literature concerning mpox ethical issues and stigma from May 6, 2022, to February 15, 2023. The key search terms used were "monkeypox", "ethics", "morals", "social stigma", "privacy", "confidentiality", "secrecy", "privilege", "egoism", and "metaethics". This scoping review followed the framework proposed by Arksey and O'Malley in 2005 and was further improved by the recommendations of Levac et al. in 2010. RESULTS: The search strategies employed in the scoping review yielded a total of 454 articles. We analyzed the sources, types, and topics of the retrieved articles/studies. The authors were able to identify 32 studies that met inclusion criteria. Six of the 32 included studies were primary research. The study revealed that the ongoing mpox outbreak is contending with a notable surge in misinformation and societal stigma. It highlights the adverse impacts of stigma and ethical concerns associated with mpox, which can negatively affect people with the disease. CONCLUSION: The study's findings underscore the imperative need to enhance public awareness; involve civil society; and promote collaboration among policymakers, medical communities, and social media platforms. These collective endeavors are crucial for mitigating stigma, averting human-to-human transmission, tackling racism, and dispelling misconceptions associated with the outbreak.

Unlocking Public Health Data: Navigating New Legal Guardrails and Emerging AI Challenges.

Here, we analyze the public health implications of recent legal developments - including privacy legislation, intergovernmental data exchange, and artificial intelligence governance - with a view toward the future of public health informatics and the potential of diverse data to inform public health actions and drive population health outcomes.

Augmenting maternal clinical cohort data with administrative laboratory dataset linkages: a validation study.

Background: The use of big data and large language models in healthcare can play a key role in improving patient treatment and healthcare management, especially when applied to large-scale administrative data. A major challenge to achieving this is ensuring that patient confidentiality and personal information is protected. One way to overcome this is by augmenting clinical data with administrative laboratory dataset linkages in order to avoid the use of demographic information. Methods: We explored an alternative method to examine patient files from a large administrative dataset in South Africa (the National Health Laboratory Services, or NHLS), by linking external data to the NHLS database using specimen barcodes associated with laboratory tests. This offers us with a deterministic way of performing data linkages without accessing demographic information. In this paper, we quantify the performance metrics of this approach. Results: The linkage of the large NHLS data to external hospital data using specimen barcodes achieved a 95% success. Out of the 1200 records in the validation sample, 87% were exact matches and 9% were matches with typographic correction. The remaining 5% were either complete mismatches or were due to duplicates in the administrative data. Conclusions: The high success rate indicates the reliability of using barcodes for linking data without demographic identifiers. Specimen barcodes are an effective tool for deterministic linking in health data, and may provide a method of creating large, linked data sets without compromising patient confidentiality.

The Impact of Data Suppression Rules on Data Access and Re-Identification Risk in Adoption and Foster Care Analysis and Reporting System Annual Files.

One of the most widely used data sources for research on foster care and adoption is the Adoption and Foster Care Analysis and Reporting System (AFCARS). County identifiers in AFCARS are suppressed for all counties with fewer than 1000 cases to prevent the re-identification of vulnerable children, but this also impacts researchers' ability to study smaller communities and analyze how local environments may affect out-of-home placements. This study uses non-public AFCARS datasets to assess, for the first time, how data suppression rules impact data access and re-identification risk. It compares the long-standing 1000-case threshold against a wide range of potential alternatives and finds substantial data access gains coupled with moderate risk increases for thresholds between 400 and 700. Adopting a 700-case threshold leads to a 50% increase in the number of identifiable counties while also keeping the percentage of fostered children who face an elevated risk of re-identification below 1%. Making data from a substantial number of rural counties available to researchers requires much larger threshold changes, which in turn increases re-identification risks.

Guardian Reasons for Accessing Their Transgender and Gender-Diverse Adolescent's Patient Portal Account.

PURPOSE: To understand if and why guardians access their adolescent child's electronic health record patient portal account. METHODS: Guardians of transgender and gender-diverse adolescents completed a survey regarding patient portal use. Descriptive statistics were used to describe items related to guardian access to adolescent portal accounts. RESULTS: Of 82 respondents, 37.8% indicated they had used their child's login to access the patient portal. Most indicated they accessed their adolescent's account because their child asked them to do so. Other common reasons included being worried they might miss important health information and not realizing there was a difference between patient and proxy accounts. DISCUSSION: Results of this study provide a more detailed understanding regarding guardian access to adolescent patient portals. Findings can be used to inform adolescent patient portal design and enrollment practices that protect adolescent confidentiality.

Using a Mobile Messenger Service as a Digital Diary to Capture Patients' Experiences Along Their Interorganizational Treatment Path in Gynecologic Oncology: Lessons Learned.

A digital diary in the form of a mobile messenger service offers a novel method for data collection in cancer research. Little is known about the things to consider when using this data collection method in clinical research for patients with cancer. In this Viewpoint paper, we discuss the lessons we learned from using a qualitative digital diary method via a mobile messenger service for data collection in oncology care. The lessons learned focus on three main topics: (1) data quality, (2) practical aspects, and (3) data protection. We hope to provide useful information to other researchers who consider this method for their research with patients. First, in this paper, we argue that the interactive nature of a digital diary via a messenger service is very well suited for the phenomenological approach and produces high-quality data. Second, we discuss practical issues of data collection with a mobile messenger service, including participant and researcher interaction. Third, we highlight corresponding aspects around technicalities, particularly those regarding data security. Our views on data privacy and information security are summarized in a comprehensive checklist to inform fellow researchers on the selection of a suitable messenger service for different scenarios. In our opinion, a digital diary via a mobile messenger service can provide high-quality data almost in real time and from participants' daily lives. However, some considerations must be made to ensure that patient data are sufficiently protected. The lessons we learned can guide future qualitative research using this relatively novel method for data collection in cancer research.