Confidentiality Of Health Data Research Articles

Development of Web-Based Health Information Service Systems

Background: Efforts to build services that can provide information quickly and accurately are significant for an agency. The use of the internet in finding health services is a place that can provide information that is not only fast but also provides the right solution. Therefore, a health service website was created containing information about health services, by utilizing the development of information technology, which can carry out health services through a website that can be accessed at any time (Real Time) by the public anywhere and anytime. Laravel is a Hypertext Preprocessor (PHP) programming language framework created by Taylor Otwell that has many modern features that help developers create applications. This study aims to design a technology-based health information service system with a web platform to increase public health awareness and facilitate access to information about health services.
 Method: The method used is a linear system development method, namely the waterfall method where each stage of development is carried out sequentially, starting from the stages of analysis, design, implementation, testing, and maintenance.
 Result: The results showed that web-based health information service systems can improve the efficiency and effectiveness of health services, obtain accurate and up-to-date information about health services, and provide easy access to health information for the public.
 Conclusion: Based on the results of research that has been conducted, it can be concluded that the development of web-based health information service systems has the potential to improve the quality of health services. This system can help health facilities improve the efficiency and effectiveness of health services, by reducing manual processes and improving collaboration between health workers, increasing the accuracy and completeness of health data, reducing data input errors and increasing data accessibility, increasing the security and confidentiality of health data, and increasing patient satisfaction specifically and the public in general, by providing faster services and easy.

“There should be one spot that you can go:” BRCA mutation carriers’ perspectives on cancer risk management and a hereditary cancer registry

Individuals who carry BRCA1 or BRCA2 pathogenic variants are recommended to have extensive cancer prevention screening and risk-reducing surgeries. Uptake of these recommendations is variable, and there remains room for improvement in the risk management of BRCA carriers. This paper explores female BRCA carriers’ experiences with the current model of care and their perspectives on (and interest in) an inherited cancer registry. Findings can inform the development of a dedicated high-risk screening and management program for these patients. Quantitative and qualitative data were gathered through a provincial descriptive survey and semi-structured qualitative interviews to assess BRCA carriers’ opinions toward risk management services in the province of Newfoundland and Labrador (NL), Canada. Survey (n = 69) and interview data (n = 15) revealed continuity and coordination challenges with the current system of care of high-risk individuals. Respondents suggested an inherited cancer registry would help identify high-risk individuals and provide a centralized system of risk management for identified carriers. Respondents identified concerns about the privacy of their registry data, including who could access it. Findings suggest BRCA carriers see great value in an inherited cancer registry. Specifically, participants noted it could provide a centralized system to help improve the coordination of burdensome, life-long risk management. Important patient concerns about protecting their privacy and their health data confidentiality must be addressed in patient and public information and informed consent documents about a registry.

An Overview of Pharmacogenomic Testing for Psychiatric Disorders


 Pharmacogenomic testing is a precision medicine technology that examines genetic variation in medication metabolism. Selected for inclusion in CADTH’s 2023 Watch List, pharmacogenomic testing has the potential to significantly influence the landscape of health care in Canada over the next 5 years. By analyzing an individual’s unique genetic profile, this testing aims to guide personalized treatment strategies that improve therapeutic outcomes, optimize the medication selection process, and enhance patient experiences. The integration of pharmacogenomic testing into clinical practice may pave the way for a more efficient and effective delivery of mental health care.
 Pharmacogenomic tests for psychiatric disorders that are available in Canada include direct-to-consumer tests — which are paid out of pocket — and tests that are offered as a laboratory service (which may or may not be paid out of pocket). These tests are quite different from each other, including the types and number of genes examined, cost of testing, and methods used for sample collection and analysis.
 Despite being available for approximately 20 years and that numerous guideline-developing groups and regulators have issued recommendations about the types of pharmacogenomic information that should be used to guide prescribing decisions, pharmacogenomic testing has yet to be integrated into most psychiatric care practices in Canada and worldwide. Although some studies suggest pharmacogenomic testing provides benefits over treatment as usual, the evidence is often conflicting and of limited quality. Concerns related to risk of bias, inconsistency across studies, reproducibility, and generalizability do not allow a clear and consistent interpretation of the results.
 This Horizon Scan provides an overview of information related to pharmacogenomic testing for psychiatric disorders, a description of some of the published studies, and a summary of some important considerations related to clinician education and training, privacy and confidentiality of health data, health equity, and laboratory capacity should testing become more widely used in Canada.

Confidentiality of health data in contact tracing systems during the Covid-19 pandemic in France

SARS-CoV-2 emerged in late 2019 and had become, within a few months, the focus of global attention due to its high transmissibility and its ability to cause acute respiratory failure, especially in the elderly and in people with comorbidities.1 Most governments, faced with a pandemic of a magnitude unprecedented in the 21st century,2 adopted emergency measures to reduce or stop the spread of the virus. Contact tracing is a well-established practice that consists of identifying people who have come into contact with infected people. During the Covid-19 pandemic, contact tracing was carried out using new methods. Manual contact tracing (MCT), in which the key stage consists of interviewing infected subjects in order to identify their contacts,3 has involved the collection and recording of data in electronic databases.4 In parallel, digital contact tracing (DCT), in which notification of infection risk uses a smartphone application, was implemented for the first time in a pandemic although the principle had already been described.5

Telemedicine and digital narrative medicine for the customization of the diagnostic-therapeutic path at the time of COVID 19

The Covid-19 issues have placed the telemedicine into the limelight, for its ability to reach remote patients affected by COVID-19, offering them support, expert advice, home hospitalization. At the same time, it gives the many fragile patients, who should be submitted to therapeutic checks or adjustments, the opportunity to be followed appropriately, avoiding travelling and associated risks of contagion. The current situation has accelerated its use in diabetological care: but with the risk of reducing the medical-patient empathic relationship. Narrative Medicine (NBM) integrates with Evidence-Based Medicine (EBM) and, taking into account the plurality of perspectives, makes clinical-care decisions more complete, personalized, effective and appropriate. The stories told by patient and by those who take care, are an essential element of contemporary medicine, based on the active participation of the subjects who are involved in the choices. People, through their own stories, become protagonists of the process of care”. The ability of mixing the technology achievements with the humanistic vision of the care process characterizes DNM, the first digital platformentirely designed for the development of narrative medicine projects in the clinical practice. It was conceived by a team of anthropologists and psychologists with the advice of doctors and experts in narrative medicine of OMNI the Observatory of Narrative Medicine Italy. The DNM features aim to maximize the potential of the digital process, at the same time preserving patient privacy and health data confidentiality. KEY WORDS telemedicine; narrative medicine; digital narrative medicine.

Needs assessment for a reproductive health registry towards a harmonised reproductive health registry in the occupied Palestinian territory: a qualitative study

BackgroundReductions of maternal and child mortality are among the UN's Millennium Development Goals. The estimated maternal mortality ratio (MMR) in the occupied Palestinian territory in 2010 was 64 per 100 000 livebirths. WHO has developed a global initiative, the harmonised reproductive health registry (hRHR), to improve data quality and to reduce maternal and infant mortality. We undertook a needs assessment to identify strengths, opportunities, and gaps in the present information system for reproductive health in the occupied Palestinian territory before development of a strategic action plan for the future. MethodsWe used a qualitative needs assessment tool (NAT) that has been developed in the International hRHR project and adapted to the Palestinian context. The tool was developed with sections on legal issues, essential indicators, minimum dataset, data collection, data dissemination, and data use. This assessment will help to identify data gaps, which can then be filled to help reduce maternal and child deaths. Through in-depth interviews with senior managers at the Ministry of Health, we adapted the NAT to the Palestinian context. A 1 day workshop with 20 participants from Ministry of Health stakeholder institutions (eg, Department of Primary Health Care) completed the NAT. FindingsThe needs assessment showed substantial current data collection in antenatal, perinatal, and postnatal care in local health facilities. However, very little information is exchanged between primary and secondary care, jeopardising the continuum of care and preventing data being used to benefit services provided or for public health purposes. Nationally, reports consist mostly of aggregated, monthly reports of health status and activities that are then published annually. Data are not used for management, to improve quality of care, or to give feedback to health-care providers. Although many of the interventions practised are in line with the essential interventions recommended by WHO, legislation about confidentiality of health data is restricted, and no national agreement has been made about essential interventions, indicators, or a minimum dataset to be collected. InterpretationData that are collected should be kept at a necessary minimum and be selected according to evidence-based essential interventions. A way to improve the system would be to introduce a comprehensive computerised hRHR in a consensus-driven process with the major stakeholders in maternal–child health. FundingWHO Palestinian National Institute of Public Health Project.

Genetic privacy needs a more nuanced approach

Because confidentiality of health data cannot be guaranteed, people should consider both the risks and advantages of sharing them, argues Misha Angrist.

Exploring the Boundaries of Web Map Services: The Example of the Online Injury Atlas for Ontario

AbstractInjury from causes such as falls, traffic accidents, or violence is a major public health issue globally. Injury prevention research aims to identify vulnerable populations and places by analyzing the spatial patterns of demographic and socio‐economic risk factors associated with elevated injury rates. The stakeholders in injury prevention and control are often distributed across government and public health institutions, non‐profits, and even the private sector (e.g. insurance firms). While this situation calls for distributed, online research tools, their implementation may conflict with health data confidentiality and license limitations for socio‐economic data. In this article, we present the Online Injury Atlas for Ontario, which was designed with the explicit goal of making use of, and contributing to, the Canadian Geospatial Data Infrastructure. We propose a service‐based architecture that integrates publicly accessible map services with protected data layers. Thereby, we demonstrate the benefits of using spatial data infrastructures alongside private data at different levels of protection. In addition, we discuss the extensive data processing needs and specific cartographic design requirements of a Web atlas in the health and social sciences domain.

Health Information Privacy Reform

Statutory protection for personal health information privacy is in clear need of reform. With few exceptions, current legal safeguards provide uneven coverage and limited protection. Absence of a uniform federal code of fair health information practices leaves individual rights in health information compromised, exposes data users, and poses a potential threat to the integrity of the data. Current legislative proposals for national health care reform seek to standardize privacy protection while simultaneously facilitating usage of personal health information in an electronic data network. Reform provisions for confidentiality of health data will establish explicit duties for "health information trustees" and should strengthen privacy safeguards in the workplace.

Personal view:

The author, a consultant physician at City Hospital, Edinburgh, proposes a series of public health measures to control the transmission of the AIDS-associated HTLV-III virus among intravenous drug abusers. He supports screening of blood without consent, tracing and screening the sexual contacts of HTLV-III positive individuals, counseling of the patients and their contacts, arranging access to unshared needles and syringes for persistent drug abusers, and notification of the general practitioners of hospital patients found to be HTLV-III positive. Welsby contends that his proposals do not violate the Department of Health and Social Security's code on confidentiality of health data and that several of his suggested actions are already in use against other, less menacing, sexually-transmitted diseases.