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JMIR MHealth and UHealth Jun 2021During the COVID-19 pandemic, contact tracing apps have received a lot of public attention. The ongoing debate highlights the challenges of the adoption of data-driven... (Review)
Review
BACKGROUND
During the COVID-19 pandemic, contact tracing apps have received a lot of public attention. The ongoing debate highlights the challenges of the adoption of data-driven innovation. We reflect on how to ensure an appropriate level of protection of individual data and how to maximize public health benefits that can be derived from the collected data.
OBJECTIVE
The aim of the study was to analyze available COVID-19 contact tracing apps and verify to what extent public health interests and data privacy standards can be fulfilled simultaneously in the process of the adoption of digital health technologies.
METHODS
A systematic review of PubMed and MEDLINE databases, as well as grey literature, was performed to identify available contact tracing apps. Two checklists were developed to evaluate (1) the apps' compliance with data privacy standards and (2) their fulfillment of public health interests. Based on both checklists, a scorecard with a selected set of minimum requirements was created with the goal of estimating whether the balance between the objective of data privacy and public health interests can be achieved in order to ensure the broad adoption of digital technologies.
RESULTS
Overall, 21 contact tracing apps were reviewed. In total, 11 criteria were defined to assess the usefulness of each digital technology for public health interests. The most frequently installed features related to contact alerting and governmental accountability. The least frequently installed feature was the availability of a system of medical or organizational support. Only 1 app out of 21 (5%) provided a threshold for the population coverage needed for the digital solution to be effective. In total, 12 criteria were used to assess the compliance of contact tracing apps with data privacy regulations. Explicit user consent, voluntary use, and anonymization techniques were among the most frequently fulfilled criteria. The least often implemented criteria were provisions of information about personal data breaches and data gathered from children. The balance between standards of data protection and public health benefits was achieved best by the COVIDSafe app and worst by the Alipay Health Code app.
CONCLUSIONS
Contact tracing apps with high levels of compliance with standards of data privacy tend to fulfill public health interests to a limited extent. Simultaneously, digital technologies with a lower level of data privacy protection allow for the collection of more data. Overall, this review shows that a consistent number of apps appear to comply with standards of data privacy, while their usefulness from a public health perspective can still be maximized.
Topics: COVID-19; Child; Contact Tracing; Humans; Mobile Applications; Pandemics; Privacy; Public Health; SARS-CoV-2
PubMed: 34033581
DOI: 10.2196/23250 -
PeerJ. Computer Science 2022On January 8, 2020, the Centers for Disease Control and Prevention officially announced a new virus in Wuhan, China. The first novel coronavirus (COVID-19) case was...
BACKGROUND
On January 8, 2020, the Centers for Disease Control and Prevention officially announced a new virus in Wuhan, China. The first novel coronavirus (COVID-19) case was discovered on December 1, 2019, implying that the disease was spreading quietly and quickly in the community before reaching the rest of the world. To deal with the virus' wide spread, countries have deployed contact tracing mobile applications to control viral transmission. Such applications collect users' information and inform them if they were in contact with an individual diagnosed with COVID-19. However, these applications might have affected human rights by breaching users' privacy.
METHODOLOGY
This systematic literature review followed a comprehensive methodology to highlight current research discussing such privacy issues. First, it used a search strategy to obtain 808 relevant papers published in 2020 from well-established digital libraries. Second, inclusion/exclusion criteria and the snowballing technique were applied to produce more comprehensive results. Finally, by the application of a quality assessment procedure, 40 studies were chosen.
RESULTS
This review highlights privacy issues, discusses centralized and decentralized models and the different technologies affecting users' privacy, and identifies solutions to improve data privacy from three perspectives: public, law, and health considerations.
CONCLUSIONS
Governments need to address the privacy issues related to contact tracing apps. This can be done through enforcing special policies to guarantee users privacy. Additionally, it is important to be transparent and let users know what data is being collected and how it is being used.
PubMed: 35111915
DOI: 10.7717/peerj-cs.826 -
BMC Public Health Aug 2013The uptake of HIV testing and counselling services remains low in risk groups around the world. Fear of stigmatisation, discrimination and breach of confidentiality... (Review)
Review
BACKGROUND
The uptake of HIV testing and counselling services remains low in risk groups around the world. Fear of stigmatisation, discrimination and breach of confidentiality results in low service usage among risk groups. HIV self-testing (HST) is a confidential HIV testing option that enables people to find out their status in the privacy of their homes. We evaluated the acceptability of HST and the benefits and challenges linked to the introduction of HST.
METHODS
A literature review was conducted on the acceptability of HST in projects in which HST was offered to study participants. Besides acceptability rates of HST, accuracy rates of self-testing, referral rates of HIV-positive individuals into medical care, disclosure rates and rates of first-time testers were assessed. In addition, the utilisation rate of a telephone hotline for counselling issues and clients` attitudes towards HST were extracted.
RESULTS
Eleven studies met the inclusion criteria (HST had been offered effectively to study participants and had been administered by participants themselves) and demonstrated universally high acceptability of HST among study populations. Studies included populations from resource poor settings (Kenya and Malawi) and from high-income countries (USA, Spain and Singapore). The majority of study participants were able to perform HST accurately with no or little support from trained staff. Participants appreciated the confidentiality and privacy but felt that the provision of adequate counselling services was inadequate.
CONCLUSIONS
The review demonstrates that HST is an acceptable testing alternative for risk groups and can be performed accurately by the majority of self-testers. Clients especially value the privacy and confidentiality of HST. Linkage to counselling as well as to treatment and care services remain major challenges.
Topics: Counseling; Female; HIV Infections; Humans; Male; Patient Acceptance of Health Care; Reagent Kits, Diagnostic; Self Care
PubMed: 23924387
DOI: 10.1186/1471-2458-13-735 -
Journal of Medical Internet Research May 2024Mobile health (mHealth) apps have the potential to enhance health care service delivery. However, concerns regarding patients' confidentiality, privacy, and security... (Review)
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.
Topics: Humans; Confidentiality; Telemedicine; Mobile Applications; Computer Security; Privacy
PubMed: 38820572
DOI: 10.2196/50715 -
Journal of the American Medical... Dec 2020Privacy-related concerns can prevent equitable participation in health research by US Indigenous communities. However, studies focused on these communities' views...
BACKGROUND
Privacy-related concerns can prevent equitable participation in health research by US Indigenous communities. However, studies focused on these communities' views regarding health data privacy, including systematic reviews, are lacking.
METHODS
We conducted a systematic literature review analyzing empirical, US-based studies involving American Indian/Alaska Native (AI/AN) and Native Hawaiian or other Pacific Islander (NHPI) perspectives on health data privacy, which we define as the practice of maintaining the security and confidentiality of an individual's personal health records and/or biological samples (including data derived from biological specimens, such as personal genetic information), as well as the secure and approved use of those data.
RESULTS
Twenty-one studies involving 3234 AI/AN and NHPI participants were eligible for review. The results of this review suggest that concerns about the privacy of health data are both prevalent and complex in AI/AN and NHPI communities. Many respondents raised concerns about the potential for misuse of their health data, including discrimination or stigma, confidentiality breaches, and undesirable or unknown uses of biological specimens.
CONCLUSIONS
Participants cited a variety of individual and community-level concerns about the privacy of their health data, and indicated that these deter their willingness to participate in health research. Future investigations should explore in more depth which health data privacy concerns are most salient to specific AI/AN and NHPI communities, and identify the practices that will make the collection and use of health data more trustworthy and transparent for participants.
Topics: Attitude to Health; Biological Specimen Banks; Confidentiality; Ethics, Research; Genetic Privacy; Health Records, Personal; Humans; Native Hawaiian or Other Pacific Islander; Privacy; United States; American Indian or Alaska Native
PubMed: 33063114
DOI: 10.1093/jamia/ocaa235 -
Drug and Alcohol Dependence Mar 2023The prevalence of drug use in Muslim communities is difficult to estimate due to religious, social, and cultural prohibition toward drug use. With Islam affecting all... (Review)
Review
Barriers and facilitators to accessing inpatient and community substance use treatment and harm reduction services for people who use drugs in the Muslim communities: A systematic narrative review of studies on the experiences of people who receive services and service providers.
BACKGROUND
The prevalence of drug use in Muslim communities is difficult to estimate due to religious, social, and cultural prohibition toward drug use. With Islam affecting all aspects of life in the Muslim world, people who use drugs do it clandestinely to avoid stigma and exclusion from the community, leading to a low number of them seeking treatment for their drug use. This review explored the barriers and facilitators to accessing inpatient and community substance use treatment and harm reduction services for people who use drugs in Muslim communities.
METHODS
This review was in accordance with PRISMA. Seven databases were systematically searched for qualitative, quantitative, and mixed methods studies conducted in countries where at least 70% of the population were Muslim or where data were presented separately for Muslim communities in other countries. Eligible articles were reviewed, and key qualitative themes were abstracted and compared across studies and settings.
RESULTS
Twenty-four studies were included from Iran, Bangladesh, Afghanistan, Tajikistan, Kazakhstan, Kyrgyzstan, Egypt, Lebanon, and UAE. Two themes were identified: a psychosocial theme included denial of the problem severity, lack of trust in the treatment system, fear of breach in confidentiality and privacy, the need for community support, religion and women who use drugs. Additionally, an organizational theme included affordability, treatment Service characteristics, lack of Awareness, service providers' Attitudes, drug use registration and fear of legal consequences of drug use. Stigma was also identified as an over-arching theme. The Mixed Methods Appraisal Tool (MMAT) was used to assess the quality of the included studies with where 12 of the studies met all 5 the quality criteria. No studies were excluded for having lower quality scores.
CONCLUSION
This review reflected how diverse the Muslim world is in drug use. It is important to use mosques to raise awareness on people who use drugs and reduce stigma. Providing holistic services for people who use drugs specially women will improve their access to treatment and harm reduction services in the Muslim world.
Topics: Humans; Female; Islam; Harm Reduction; Inpatients; Substance-Related Disorders; Social Stigma; Qualitative Research
PubMed: 36805826
DOI: 10.1016/j.drugalcdep.2023.109790 -
Journal of Medical Internet Research May 2024Health care organizations worldwide are faced with an increasing number of cyberattacks and threats to their critical infrastructure. These cyberattacks cause... (Review)
Review
BACKGROUND
Health care organizations worldwide are faced with an increasing number of cyberattacks and threats to their critical infrastructure. These cyberattacks cause significant data breaches in digital health information systems, which threaten patient safety and privacy.
OBJECTIVE
From a sociotechnical perspective, this paper explores why digital health care systems are vulnerable to cyberattacks and provides sociotechnical solutions through a systematic literature review (SLR).
METHODS
An SLR using the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) was conducted by searching 6 databases (PubMed, Web of Science, ScienceDirect, Scopus, Institute of Electrical and Electronics Engineers, and Springer) and a journal (Management Information Systems Quarterly) for articles published between 2012 and 2022 and indexed using the following keywords: "(cybersecurity OR cybercrime OR ransomware) AND (healthcare) OR (cybersecurity in healthcare)." Reports, review articles, and industry white papers that focused on cybersecurity and health care challenges and solutions were included. Only articles published in English were selected for the review.
RESULTS
In total, 5 themes were identified: human error, lack of investment, complex network-connected end-point devices, old legacy systems, and technology advancement (digitalization). We also found that knowledge applications for solving vulnerabilities in health care systems between 2012 to 2022 were inconsistent.
CONCLUSIONS
This SLR provides a clear understanding of why health care systems are vulnerable to cyberattacks and proposes interventions from a new sociotechnical perspective. These solutions can serve as a guide for health care organizations in their efforts to prevent breaches and address vulnerabilities. To bridge the gap, we recommend that health care organizations, in partnership with educational institutions, develop and implement a cybersecurity curriculum for health care and intelligence information sharing through collaborations; training; awareness campaigns; and knowledge application areas such as secure design processes, phase-out of legacy systems, and improved investment. Additional studies are needed to create a sociotechnical framework that will support cybersecurity in health care systems and connect technology, people, and processes in an integrated manner.
Topics: Computer Security; Humans; Delivery of Health Care; Patient Safety
PubMed: 38820579
DOI: 10.2196/46904 -
The British Journal of General Practice... Mar 2015Online access to medical records by patients can potentially enhance provision of patient-centred care and improve satisfaction. However, online access and services may... (Review)
Review
BACKGROUND
Online access to medical records by patients can potentially enhance provision of patient-centred care and improve satisfaction. However, online access and services may also prove to be an additional burden for the healthcare provider.
AIM
To assess the impact of providing patients with access to their general practice electronic health records (EHR) and other EHR-linked online services on the provision, quality, and safety of health care.
DESIGN AND SETTING
A systematic review was conducted that focused on all studies about online record access and transactional services in primary care.
METHOD
Data sources included MEDLINE, Embase, CINAHL, Cochrane Library, EPOC, DARE, King's Fund, Nuffield Health, PsycINFO, OpenGrey (1999-2012). The literature was independently screened against detailed inclusion and exclusion criteria; independent dual data extraction was conducted, the risk of bias (RoB) assessed, and a narrative synthesis of the evidence conducted.
RESULTS
A total of 176 studies were identified, 17 of which were randomised controlled trials, cohort, or cluster studies. Patients reported improved satisfaction with online access and services compared with standard provision, improved self-care, and better communication and engagement with clinicians. Safety improvements were patient-led through identifying medication errors and facilitating more use of preventive services. Provision of online record access and services resulted in a moderate increase of e-mail, no change on telephone contact, but there were variable effects on face-to-face contact. However, other tasks were necessary to sustain these services, which impacted on clinician time. There were no reports of harm or breaches in privacy.
CONCLUSION
While the RoB scores suggest many of the studies were of low quality, patients using online services reported increased convenience and satisfaction. These services positively impacted on patient safety, although there were variations of record access and use by specific ethnic and socioeconomic groups. Professional concerns about privacy were unrealised and those about workload were only partly so.
Topics: Access to Information; Ambulatory Care Information Systems; Communication; Delivery of Health Care; Electronic Health Records; Humans; Patient Satisfaction; Primary Health Care
PubMed: 25733435
DOI: 10.3399/bjgp15X683941 -
Genetics in Medicine : Official Journal... Apr 2016The extent of the responsibility of health-care professionals (HCPs) to ensure that patients' relatives are told of their risk is unclear. Current international... (Meta-Analysis)
Meta-Analysis Review
PURPOSE
The extent of the responsibility of health-care professionals (HCPs) to ensure that patients' relatives are told of their risk is unclear. Current international guidelines take confidentiality to the individual patient as the default position, but some suggest that disclosure could be default and genetic information could be conceptualized as familial.
METHODS
Our systematic review and synthesis of 17 studies explored the attitudes of HCPs, patients, and the public regarding the extent of HCPs' responsibility to relatives with respect to disclosure.
RESULTS
Health-care professionals generally felt a responsibility to patients' relatives but perceived a variety of reasons why it would be difficult to act on this responsibility. Public/patient views were more wide-ranging. Participants identified several competing and overlapping arguments for and against HCP disclosure: guidelines do not permit/mandate it, privacy, medical benefit, impact on family dynamics, quality of communication, and respecting autonomy.
CONCLUSION
We argue that HCPs can sometimes share genetic information without breaching confidentiality and that they could factor into their considerations the potential harm to family dynamics of nondisclosure. However, we need more nuanced research about their responsibilities to relatives, particularly as genomic tests are used more frequently in clinical practice.Genet Med 18 4, 290-301.
Topics: Duty to Warn; Empirical Research; Ethics, Medical; Family; Family Relations; Genetic Counseling; Genetics, Medical; Health Personnel; Humans; Professional-Patient Relations; Surveys and Questionnaires
PubMed: 26110233
DOI: 10.1038/gim.2015.72 -
Nursing Research and Practice 2024Bedside nursing handover is a recognized nursing practice that involves conducting shift change communication at the patient's bedside to enhance communication safety....
BACKGROUND
Bedside nursing handover is a recognized nursing practice that involves conducting shift change communication at the patient's bedside to enhance communication safety. Understanding the perceptions of both patients and nurses regarding bedside handover is crucial in identifying the key principles for developing and implementing effective bedside handover protocols. However, there is currently a lack of comprehensive evidence that summarizes and evaluates studies focused on qualitative approaches for gaining insights into the perceptions of both nurses and patients.
PURPOSE
This meta-synthesis review aims to identify, synthesize, and evaluate the quality of primary qualitative studies on the perceptions of patients and nurses about bedside nursing handover.
METHODS
A meta-synthesis review was conducted to identify qualitative studies that reported patients and nurses' perceptions about bedside handover using seven electronic databases, including CINAHL, PsycINFO, Embase, Education Database (ProQuest), Web of Science, The Cochrane Library, and PubMed, from January 2013 to November 2023. The authors independently selected reviews, extracted data, and evaluated the quality of included studies using the 10-item JBI Qualitative Assessment and Review Instrument tool.
RESULTS
A total of 871 articles were retrieved, of which 13 met the inclusion and exclusion criteria. These studies identified three main themes: (1) facilitators of bedside nursing handover, (2) barriers to bedside nursing handover, and (3) strategies to maintain confidentiality during bedside handover.
CONCLUSION
This study systematically reviewed and integrated the perceptions of patients and nurses about bedside handover. Based on nurses' perceptions, the combined findings highlight the facilitators of bedside handover, including developing partnership interaction between nurses and patients, promoting professionalism, and enhancing emotional communication among nurses. From the patients' viewpoint, the synthesized findings emphasize the facilitators of bedside handover, including acknowledging the expertise, professionalism, and humanity of the nursing profession, ensuring a sense of safety, satisfaction, and confidence in the care received, as well as promoting individualized nursing care. In the context of barriers to bedside handover, both nurses and patients perceive breaches of confidentiality and privacy violations as significant barriers. When it comes to maintaining confidentiality during bedside handovers, it is important to consider patients' preferences. Patients often prefer handovers to take place in a private setting. From the nurses' perspective, it is important to inquire with patients about their preference for the presence of caregivers, and to conduct private handovers for sensitive issues away from the bedside. . Clinicians should carefully evaluate the barriers and facilitators in this meta-synthesis prior to implementing bedside handover. . This study is registered in PROSPERO with Protocol registration ID: CRD42024514615.
PubMed: 38716049
DOI: 10.1155/2024/3208747