Privacy Of Health Data Research Articles

Establishing an ethics and governance framework for access to and linkage of electronic health data for research projects.

ObjectivesTo develop an ethics and governance framework for the National Centre for Healthy Ageing (NCHA) data platform that supports: streamlined access to data for research; transfer of data into secure data environments; linkage with a range of external data sources and incorporation of a variety of data types. ApproachThe NCHA data platform is bringing together Electronic Health Data across an entire region for health service and clinical research. Methods used to establish the framework include: review of existing national (Australian Institute of Health and Welfare’s data governance framework) and international (Guiding principles from ISO/IEC 385051:2017) frameworks, stakeholder engagement and early piloting through use cases. End-users and executive staff (clinical, research and legal) were consulted to ensure compliance and streamlining with existing processes. A data access governance committee was formed with expertise in data access, linkage of large health data sets, ethics, health data privacy and legal policy. ResultsData governance frameworks and policies from established state registries, large clinical trials and health data sharing and linkage centres (n=7) were reviewed and a summary was presented to the committee. An existing data access and sharing agreement and principles was chosen as a template based on existing stakeholder collaborations and relevance to the two NCHA institutes (Monash University and Peninsula Health). The draft agreement and principles were modified and piloted for data access use cases (n=6). Feedback from researchers (n=3) was used to refine the framework. The committee identified that additional frameworks, such as those outlined by the Centre for Victorian Data Linkages, will be required to accommodate future data sharing and linkage activities with industry and government. ConclusionOur work highlighted the importance of developing a robust governance framework with the ability to incorporate a range of data, that was acceptable to end-users and had sufficient flexibility to incorporate future yet to be identified data types. Ongoing work will expand the framework to include additional data linkage activities.

Cx‐CP‐ABE: Context‐aware attribute‐based access control schema and blockchain technology to ensure scalable and efficient health data privacy

AbstractNowadays, advancements in health technology have characterized modern illness diagnosis methods in the global healthcare system. The World Health Organization (WHO) has received a large number of respiratory disease patients in recent years, resulting in billions of personal health records (PHRs) being created and transmitted via cloud with the aim of taking precautions and restricting the disease. The transmission of PHR through Internet has generated significant security and privacy concerns for the global health care system. Furthermore, the potential change in the patient's health situation at any time needs immediate and secure healthcare access. For robust authentication and optimal confidentiality, it is necessary to reinforce the access control policies. As a result, various security schemes have been developed but lack efficiency while deploying cloud‐based e‐health applications, where the cloud providers are honest but curious and may obtain sensitive data without the consent of users. In this article, we present a new security scheme for e‐health mobile applications based on hybrid cipher text‐policy attribute access control, blockchain, and context‐awareness (Cx‐CP‐ABE). The approach is based on reinforcing security policies pertaining to the continuous evolution of the patient's state and context changes and the improvement of the patient's data confidentiality. The proposed security scheme has been evaluated under various patient contexts, and its performance has been measured in terms of sensitivity, number of health attributes, and execution time.

Willingness to share anonymised routinely collected clinical health data in Switzerland: a cross-sectional survey.

Routinely collected health data (or real-world data) from hospitals is becoming increasingly important to advance medical progress. Anonymisation of these data facilitates data sharing processes. This allows stakeholders of the healthcare system to compliantly access this anonymised data to address epidemiological questions, advance precision medicine, support drug development or address other medical needs. As the willingness of the general Swiss population to share anonymised health data has been uncertain, a survey was conducted to better understand their perception of sharing such data for research purposes. The present survey focused on the re-use (secondary use) of hospital-derived health data in anonymised form. A cross-sectional survey was conducted in a representative random sample (n = 1006) of the general Swiss population. The general population was contacted by phone between 14 September and 3 October 2020. The survey was also conducted in an additional population with chronic disease (n = 225) via an online panel. An independent research organisation (gfs-zürich) was commissioned to conduct the survey. The survey participation was anonymous and voluntary. The demographic composition of the interviewed participants from the general population was specifically constructed to be representative of the 18+-year-old French- and German-speaking population of Switzerland, according to the quota features gender, age and language region. Representativeness of the chronic disease population is unclear. 71% of the general population and 81% of the chronic disease group reported that they would share their anonymised health data for medical research. The drivers were mainly of an altruistic nature. Hurdles concern mainly data protection issues, potential misuse or disadvantages, e.g., by health insurers. About 56% of the general population would like to be better informed about the use of their personal health data, and 69% spontaneously reported health authorities as the stakeholder responsible for providing such information. The survey showed that the Swiss population is willing to share anonymised health data given that some key concerns are addressed. Our findings underline that a better understanding of the standards and processes around health data privacy and transparent data usage is important to build trust in the public eye. An open dialogue is required to develop a common consent on data governance for Switzerland, which would allow health data sharing with third parties. This open dialogue should involve all stakeholders of the healthcare system, so as to strive towards both a more personalised and a more sustainable Swiss healthcare system.

Creating standards for Canadian health data protection during health emergency – An analysis of privacy regulations and laws

Health emergencies require unprecedented measures to protect the public from the health disaster. Such measures may require limiting the exercise of personal freedom and other rights like the right to data privacy. The limitation, however, should be temporary and proportionate so that privacy rights are not compromised superfluously. In this aspect, the European Union (EU) implemented better data protection measures and guided the government and various entities on the acceptable ways of handling data during a pandemic, though the measures taken were not very comprehensive. Canadian privacy laws in general are sector driven and not harmonised at the national level and there is no new guidance on the usage of data during emergencies. Hence, this research will analyse laws and regulation in EU and Canada with a view to understanding the necessity of amending privacy laws in Canada to make it relevant, up-to-date and in compliance with EU data protection requirements so data sharing from EU countries could be made easy. It further encapsulates appropriate standards for Canada health data protection for better management of health data privacy.

Blockchain and medicine: From digital promise to frontline practice

The promise of blockchain has far-reaching ramifications for health-care stakeholders. Blockchain technology has the potential to improve health care by putting the patient at the centre of the system and improving health data security, privacy, and interoperability. This is a reflective piece to highlight the opportunities for applications of blockchain technology in the future of healthcare.

Codesigning a community-based participatory research project to assess tribal perspectives on privacy and health data sharing:A report from the Strong Heart Study.

Broad health data sharing raises myriad ethical issues related to data protection and privacy. These issues are of particular relevance to Native Americans, who reserve distinct individual and collective rights to control data about their communities. We sought to gather input from tribal community leaders on how best to understand health data privacy and sharing preferences in this population. We conducted a workshop with 14 tribal leaders connected to the Strong Heart Study to codesign a research study to assess preferences concerning health data privacy for biomedical research. Workshop participants provided specific recommendations regarding who should be consulted, what questions should be posed, and what methods should be used, underscoring the importance of relationship-building between researchers and tribal communities. Biomedical researchers and informaticians who collect and analyze health information from Native communities have a unique responsibility to safeguard these data in ways that align to the preferences of specific communities.

Selecting Privacy-Enhancing Technologies for Managing Health Data Use.

Privacy protection for health data is more than simply stripping datasets of specific identifiers. Privacy protection increasingly means the application of privacy-enhancing technologies (PETs), also known as privacy engineering. Demands for the application of PETs are not yet met with ease of use or even understanding. This paper provides a scope of the current peer-reviewed evidence regarding the practical use or adoption of various PETs for managing health data privacy. We describe the state of knowledge of PETS for the use and exchange of health data specifically and build a practical perspective on the steps needed to improve the standardization of the application of PETs for diverse uses of health data.

Man-in-the-Middle Attack Mitigation in Internet of Medical Things

The Internet of Medical Things are susceptible to Man-in-the-Middle (MitM) attack, which can identify healthcare emergency of monitored patients and replay normal physiological data to prevent the system from raising an alarm. In this article, we propose a framework to prevent a MitM from disrupting the operations and prohibiting the raise of alarms by the remote healthcare monitoring system. To reduce energy consumption for normal data transmission, and preserve the privacy of health data, our framework transmits a smaller size signature derived from acquired data with message authentication code, where the key is derived from received signal strength indication. Our experimental results for emergency detection show that our approach can achieve a high detection accuracy with a low false alarm rate of 3%.

A Fog and Blockchain Software Architecture for a Global Scale Vaccination Strategy

Nowadays, there are many fragmented records of patient’s health data in different locations like hospitals, clinics, and organizations all around the world. With the arrival of the COVID-19 pandemic, several governments and institutions struggled to have satisfactory, fast, and accurate decision-making in a wide, dispersed, and global environment. In the current literature, we found that the most common related challenges include delay (network latency), software scalability, health data privacy, and global patient identification. We propose to design, implement and evaluate a healthcare software architecture focused on a global vaccination strategy, considering healthcare privacy issues, latency mitigation, support of scalability, and the use of a global identification. We have designed and implemented a prototype of a healthcare software called Fog-Care, evaluating performance metrics like latency, throughput and send rate of a hypothetical scenario where a global integrated vaccination campaign is adopted in wide dispensed locations (Brazil, USA, and United Kingdom), with an approach based on blockchain, unique identity, and fog computing technologies. The evaluation results demonstrate that the minimum latency spends less than 1 second to run, and the average of this metric grows in a linear progression, showing that a decentralized infrastructure integrating blockchain, global unique identification, and fog computing are feasible to make a scalable solution for a global vaccination campaign within other hospitals, clinics, and research institutions around the world and its data-sharing issues of privacy, and identification.

SEMRES - A Triple Security Protected Blockchain Based Medical Record Exchange Structure

Background and ObjectiveCOVID-19, a serious infectious disease outbreak started in the end of 2019, has caused a strong impact on the overall medical system, which reflects the gap in the volume and capacity of medical services and highlights the importance of clinical data ex-change and application. The most important concerns of medical records in the medical field include data privacy, data correctness, and data security. By realizing these three goals, medical records can be made available to different hospital information systems to achieve the most complete medical care services. The privacy and protection of health data require detailed specification and usage requirements, which is particularly important for cross-agency data exchange. MethodsThis research is composed of three main modules. "Combined Encryption and Decryption Architecture", which includes the hybrid double encryption mechanism of AES and RSA, and encrypts medical records to produce "Secured Encrypted Medical Record". "Decentralize EMR Repository", which includes data decryption and an exchange mechanism. After a data transmission is completed, the content verification and data decryption process will be launched to confirm the correctness of the data and obtain the data. A blockchain architecture is used to store the hash value of the encrypted EMR, and completes the correctness verification of the EMR after transmission through the hash value. ResultsThe results of this study provide an efficient triple encryption mechanism for electronic medical records. SEMRES ensures the correctness of data through the non-repudiation feature of a blockchain open ledger, and complete integrated information security protection and data verification architecture, in order that medical data can be exchanged, verified, and applied in different locations. After the patient receives medical services, the medical record is re-encrypted and verified and stored in the patient's medical record. The blockchain architecture is used to ensure the verification of non-repudiation of medical service, and finally to complete the payment for medical services. ConclusionsThe main aim of this study was to complete a security architecture for medical data, and develop a triple encryption authentication architecture to help data owners easily and securely share personal medical records with medical service personnel.

Blockchain-Assisted Secure Fine-Grained Searchable Encryption for a Cloud-Based Healthcare Cyber-Physical System

The concept of sharing of personal health data over cloud storage in a healthcare-cyber physical system has become popular in recent times as it improves access quality. The privacy of health data can only be preserved by keeping it in an encrypted form, but it affects usability and flexibility in terms of effective search. Attribute-based searchable encryption (ABSE) has proven its worth by providing fine-grained searching capabilities in the shared cloud storage. However, it is not practical to apply this scheme to the devices with limited resources and storage capacity because a typical ABSE involves serious computations. In a healthcare cloud-based cyber-physical system (CCPS), the data is often collected by resource-constraint devices; therefore, here also, we cannot directly apply ABSE schemes. In the proposed work, the inherent computational cost of the ABSE scheme is managed by executing the computationally intensive tasks of a typical ABSE scheme on the blockchain network. Thus, it makes the proposed scheme suitable for online storage and retrieval of personal health data in a typical CCPS. With the assistance of blockchain technology, the proposed scheme offers two main benefits. First, it is free from a trusted authority, which makes it genuinely decentralized and free from a single point of failure. Second, it is computationally efficient because the computational load is now distributed among the consensus nodes in the blockchain network. Specifically, the task of initializing the system, which is considered the most computationally intensive, and the task of partial search token generation, which is considered as the most frequent operation, is now the responsibility of the consensus nodes. This eliminates the need of the trusted authority and reduces the burden of data users, respectively. Further, in comparison to existing decentralized fine-grained searchable encryption schemes, the proposed scheme has achieved a significant reduction in storage and computational cost for the secret key associated with users. It has been verified both theoretically and practically in the performance analysis section.

Protecting Mental Health Data Privacy in India: The Case of Data Linkage With Aadhaar.

<h3>Key Messages</h3> Under the Aadhaar system, biometric and demographic data stored in a central database can pose a significant threat to the data privacy of individuals with potentially stigmatizing conditions such as mental health disorders. The emerging use of artificial intelligence in digital solutions (including health interventions) can further complicate this situation. There is often patient exclusion in the development of artificial intelligence systems in mental health research and clinical practice. Based on Global Data Protection Regulation and other data privacy regulations, this article provides guidelines for mental health policy makers, professionals, technologists, and related health system stakeholders to protect the individual’s data privacy.

Scientist Civic Engagement and the US EPA’s “Strengthening Transparency in Regulatory Science” Rule

BACKGROUND AND AIM: For decades, vested interests, including tobacco and oil companies, have sought access to data used by observational epidemiologists, even when involving private health data. This has included attacks on environmental epidemiology, calling it “Secret Science”, in tandem with efforts to push legislation through the US Congress. History has shown that vested industries have abused such data access, and the legislation failed. More recently, the Trump Administration attempted a regulatory “end around” of Congress, via the so-called “Strengthening Transparency in Regulatory Science” rule. METHODS: The North American Chapter (NAC) Policy Committee participated in preparing and presenting written and oral testimony to the US EPA and Office of Management and Budget (OMB) during hearings and requested meetings. These submissions are online at our web page: https://isee-northamerica.github.io/isee-nac/policy.html. These records documented the many problems with the proposed regulation, including: increased potential for compromise of medical record confidentiality; a loss of intellectual property; imposition of a government unfunded mandate; likely abuse of the research data to inappropriately undermine science credibility; and, damage to future scientific research recruitment efforts. RESULTS:The ISEE NAC Policy Committee recognized the above noted dangers to scientific research, and especially environmental epidemiology and took action, via civic engagement with the government, to put in place a record of those problems for future consideration by the courts in likely later legal efforts to overturn the ill-conceived regulation. At the same time, these government meetings, along with those by other scientific societies, slowed the progress of this potential regulation. In addition, scientists worked with lawyers to prepare legal challenges to the regulation. Ultimately, these efforts succeeded in delaying the regulation long enough for it to be successfully revoked by the incoming Biden Administration. CONCLUSIONS:The ISEE NAC Policy Committee provides a means for our member scientists to successfully influence government decision-making through civic engagement. KEYWORDS: Policy, Research translation, Science communication, Transparency, Civic engagement

Design of an Architecture Contributing to the Protection and Privacy of the Data Associated with the Electronic Health Record

The Electronic Health Record (EHR) has brought numerous challenges since its inception that have prevented a unified implementation from being carried out in Colombia. Within these challenges, we find a lack of security, auditability, and interoperability. Moreover, there is no general vision of the patient’s history throughout its life since different systems store the information separately. This lack of unified history leads to multiple risks for patients’ lives and the leakage of private data because each system has different mechanisms to safeguard and protect the information, and in several cases, these mechanisms do not exist. Many researchers tried to build multiple information systems attempting to solve this problem. However, these systems do not have a formal and rigorous architectural design to analyze and obtain health needs through architectural drivers to construct robust systems to solve these problems. This article describes the process of designing a software architecture that provides security to the information that makes up the Electronic Health Record in Colombia (EHR). Once we obtained the architectural drivers, we proposed Blockchain mainly due to its immutable distributed ledger, consensus algorithms, and smart contracts that securely transport this sensitive information. With this design decision, we carried out the construction of structures and necessary architectural documentation. We also develop a Proof of Concept (POC) using Hyperledger Fabric according to the literature analysis review in order to build a primary health network, in addition to a Smart Contract (Chaincode) using the Go programming language to perform a performance evaluation and do a safety analysis that demonstrates that the proposed design is reliable. The proposed design allows us to conclude that it is possible to build a secure architecture that protects patient health data privacy, facilitating the EHR’s construction in Colombia.

Blockchain Applications in Health Care and Public Health: Increased Transparency.

BackgroundAlthough big data and smart technologies allow for the development of precision medicine and predictive models in health care, there are still several challenges that need to be addressed before the full potential of these data can be realized (eg, data sharing and interoperability issues, lack of massive genomic data sets, data ownership, and security and privacy of health data). Health companies are exploring the use of blockchain, a tamperproof and distributed digital ledger, to address some of these challenges.ObjectiveIn this viewpoint, we aim to obtain an overview of blockchain solutions that aim to solve challenges in health care from an industry perspective, focusing on solutions developed by health and technology companies.MethodsWe conducted a literature review following the protocol defined by Levac et al to analyze the findings in a systematic manner. In addition to traditional databases such as IEEE and PubMed, we included search and news outlets such as CoinDesk, CoinTelegraph, and Medium.ResultsHealth care companies are using blockchain to improve challenges in five key areas. For electronic health records, blockchain can help to mitigate interoperability and data sharing in the industry by creating an overarching mechanism to link disparate personal records and can stimulate data sharing by connecting owners and buyers directly. For the drug (and food) supply chain, blockchain can provide an auditable log of a product’s provenance and transportation (including information on the conditions in which the product was transported), increasing transparency and eliminating counterfeit products in the supply chain. For health insurance, blockchain can facilitate the claims management process and help users to calculate medical and pharmaceutical benefits. For genomics, by connecting data buyers and owners directly, blockchain can offer a secure and auditable way of sharing genomic data, increasing their availability. For consent management, as all participants in a blockchain network view an immutable version of the truth, blockchain can provide an immutable and timestamped log of consent, increasing transparency in the consent management process.ConclusionsBlockchain technology can improve several challenges faced by the health care industry. However, companies must evaluate how the features of blockchain can affect their systems (eg, the append-only nature of blockchain limits the deletion of data stored in the network, and distributed systems, although more secure, are less efficient). Although these trade-offs need to be considered when viewing blockchain solutions, the technology has the potential to optimize processes, minimize inefficiencies, and increase trust in all contexts covered in this viewpoint.

Health Data Privacy in the COVID-19 Pandemic Context: Discourses on HIPAA.

Considering the impacts of the COVID-19 pandemic on health service delivery, the US Office for Civil Rights (OCR) updated the policies on health data processing, and Health Insurance Portability and Accountability Act (HIPAA). In this study, we investigated discourses on HIPAA in relation to COVID-19. Through a search of media sources in the Factiva database, relevant texts were identified. We applied a text mining approach to identify concepts and themes in these texts. Our analysis revealed six central themes, namely, Health, HIPAA, Privacy, Security, Patients, and Need, as well as their associated concepts. Among these, Health was the most frequently discussed theme. It comprised concepts such as public, care, emergency, providers, telehealth, entity, use, discretion, OCR, Health and Human Services (HHS), enforcement, business, and services. Our discourse analysis of media outlets highlights the role of health data privacy law in the response to global public health emergencies and demonstrates how discourse analysis and computational methods can inform health data protection policymaking in the digital health era.

Water, Health, and Environmental Justice in California: Geospatial Analysis of Nitrate Contamination and Thyroid Cancer.

Environmental health hazards are known to disproportionately burden marginalized communities. Agriculture, wastewater, and industrial waste contaminate surface and groundwater, used for drinking, with nitrates. High nitrate concentrations in drinking water have been linked to methemoglobinemia and, recently, thyroid cancer. With a large proportion of the nation's agriculture grown in California, thyroid cancer linked to nitrate water contamination is of concern. This research entailed geographic and statistical analysis of water, nitrate, health, and disadvantaged communities (DACs) in California. DACs are Californian defined areas that experience a combination of hardships from socioeconomic, health, and environmental fields. Our analysis of the California Cancer Registry and California Water Board's well data shows statistically significant correlation (p < 0.05) between nitrate contamination (wells >5 and 10 ppm NO3-N per square mile and percentage of total wells) and thyroid cancer incidence. DACs had twice the rate of thyroid cancer compared with non-DACs, and higher numbers of nitrate-contaminated wells and hot spots compared with the state averages. Almost half (47%) of the Central Valley's area contained DACs and 27% of wells >10 ppm NO3-N contaminants. Our study provides a method for other states and countries to conduct preliminary geospatial analysis between water contamination and health with open data. Maps and analysis from this research can inform the public, advocacy groups, and policy leaders of health-related concerns in relation to nitrate water contamination and environmental justice in California. DACs should be provided cost-effective drinking water monitoring and treatment, and governments should incentivize nitrate loading reductions in agriculture, industry, and wastewater. Future research is recommended with more localized, private health data on thyroid cancer incidence.

A Blockchain-Enabled Framework for mHealth Systems.

Presently modern technology makes a significant contribution to the transition from traditional healthcare to smart healthcare systems. Mobile health (mHealth) uses advances in wearable sensors, telecommunications and the Internet of Things (IoT) to propose a new healthcare concept centered on the patient. Patients’ real-time remote continuous health monitoring, remote diagnosis, treatment, and therapy is possible in an mHealth system. However, major limitations include the transparency, security, and privacy of health data. One possible solution to this is the use of blockchain technologies, which have found numerous applications in the healthcare domain mainly due to theirs features such as decentralization (no central authority is needed), immutability, traceability, and transparency. We propose an mHealth system that uses a private blockchain based on the Ethereum platform, where wearable sensors can communicate with a smart device (a smartphone or smart tablet) that uses a peer-to-peer hypermedia protocol, the InterPlanetary File System (IPFS), for the distributed storage of health-related data. Smart contracts are used to create data queries, to access patient data by healthcare providers, to record diagnostic, treatment, and therapy, and to send alerts to patients and medical professionals.

Modeling the impact of exposure reductions using multi-stressor epidemiology, exposure models, and synthetic microdata: an application to birthweight in two environmental justice communities.

BackgroundMany vulnerable populations experience elevated exposures to environmental and social stressors, with deleterious effects on health. Multi-stressor epidemiological models can be used to assess benefits of exposure reductions. However, requisite individual-level risk factor data are often unavailable at adequate spatial resolution.ObjectiveTo leverage public data and novel simulation methods to estimate birthweight changes following simulated environmental interventions in two environmental justice communities in Massachusetts, US.MethodsWe gathered risk factor data from public sources (US Census, Behavioral Risk Factor Surveillance System, and Massachusetts Department of Health). We then created synthetic individual-level datasets using combinatorial optimization, and probabilistic and logistic modeling. Finally, we used coefficients from a multi-stressor epidemiological model to estimate birthweight and birthweight improvement associated with simulated environmental interventions.ResultsWe created geographically-resolved synthetic microdata. Mothers with the lowest predicted birthweight were those identifying as Black or Hispanic, with parity > 1, utilization of government prenatal support, and lower educational attainment. Birthweight improvements following greenness and temperature improvements were similar for all high-risk groups and were larger than benefits from smoking cessation.SignificanceAbsent private health data, this methodology allows for assessment of cumulative risk and health inequities, and comparison of individual-level impacts of localized health interventions.

THE LAW OF MEDICAL PRIVACY IN THE USA: NOT GOOD ENOUGH FOR COVID-19

This article addresses the privacy of medical and health data in the US. It analyzes the scope and requirements of federal and state laws in the US, and it discusses the weaknesses in the US protection of medical privacy. Then, this article explains how the weak US system of privacy protection was unable to handle many important privacy issues in the COVID-19 pandemic. Finally, the article concludes with some recommendations for action.