Comparison of consumers’ views on electronic data sharing for healthcare and research

New models of healthcare delivery such as accountable care organizations and patient-centered medical homes seek to improve quality, access, and cost. They rely on a robust, secure technology infrastructure provided by health information exchanges (HIEs) and distributed research networks and the willingness of patients to share their data. There are few large, in-depth studies of US consumers’ views on privacy, security, and consent in electronic data sharing for healthcare and research together.Objective This paper addresses this gap, reporting on a survey which asks about California consumers’ views of data sharing for healthcare and research together.Materials and Methods The survey conducted was a representative, random-digit dial telephone survey of 800 Californians, performed in Spanish and English.Results There is a great deal of concern that HIEs will worsen privacy (40.3%) and security (42.5%). Consumers are in favor of electronic data sharing but elements of transparency are important: individual control, who has access, and the purpose for use of data. Respondents were more likely to agree to share deidentified information for research than to share identified information for healthcare (76.2% vs 57.3%, p < .001).Discussion While consumers show willingness to share health information electronically, they value individual control and privacy. Responsiveness to these needs, rather than mere reliance on Health Insurance Portability and Accountability Act (HIPAA), may improve support of data networks.Conclusion Responsiveness to the public’s concerns regarding their health information is a pre-requisite for patient-centeredness. This is one of the first in-depth studies of attitudes about electronic data sharing that compares attitudes of the same individual towards healthcare and research.     

e-Consent: The Design and Implementation of Consumer Consent Mechanisms in an Electronic Environment

The effective coordination of health care relies on communication of confidential information about consumers between different health and community care services. However, consumers must be able to give or withhold “e-Consent” to those who wish to access their electronic health information. There are several possible forms for e-Consent. In the general consent model, a patient provides blanket consent for access to his or her information by an organization for all future information requests. Conversely, general denial explicitly denies consent for information to be used in future circumstances, and in each new episode of care, a new consent would be needed to obtain information. In the general consent with specific denial model, a patient attaches specific exclusion conditions to his or her general approval to future accesses. In contrast, in the general denial with explicit consent model, a patient issues a blanket block on all future accesses but allows the inclusion of future use under specified conditions. There also are several alternative functions for an e-Consent system. Consent could be captured as a matter of legal record. E-Consent systems could be more active by prompting clinicians to indicate that they have noted consent conditions before they access a record. Finally, the record of patient consent could be fully active and used as a gatekeeper in a distributed information environment. There probably will need to be some form of data object that is associated with patient information. This e-Consent object (or e-Co) will contain the specific conditions under which the data to which it is attached can be retrieved. Given the complexity of clinical work and the substantial variation we can expect in an individual''s desire to make his or her personal medical details available, it is unlikely a “one size fits all” approach to e-Consent will work. Consequently, with a well-chosen consent design, it should be possible to balance the specific need for privacy of some of the population against the desire by others to err on the side of clinical safety, and clinicians desire to minimize the burden that an electronic consent mechanism would impose.The effective coordination of health care relies on the communication of confidential information about consumers between different health and community care services. Electronic data exchange and Internet technologies increasingly play important roles in such communications. Consumers must, however, be able to give or withhold consent to those who wish to access their electronic health information.For example, electronic patient records are seen by many as an essential prerequisite for health care,¹ opening up patient data to the whole clinical team involved in patient care. So, by definition, the presence of an electronic environment means that more clinical workers will be able to access patient information more often and in a greater diversity of locations. With the broadening of access to patient information comes the risks that such information is used for purposes not originally consented to by the patient.While much is known about the ways in which security technology can protect information transactions from unwanted interception,² very little work exists to determine how a consumer''s consent to view their private information is safeguarded in a networked and online environment. This report will outline a framework for obtaining and determining electronic consent (e-Consent) within health care. It will examine a range of models for e-Consent and examine some of the technical issues associated with transforming those models into working systems. It is not the intention of this report to make a specific judgment about which consent models are more acceptable or to make specific recommendations about the detailed implementation of an e-Consent system. Such decisions would need to reflect the legal framework within which any e-Consent system operates, and the expressed wishes of consumers regarding the strength of protection they desire.Specifically, the report proposes a set of basic design principles that any consent framework might need to adhere to and focuses on some of the trade-offs in system performance that these principles imply. It then examines various possible forms of consent, explores the ways that these can be implemented in an online environment, and examines how well these models reflect the design principles. Next, the report explores the nature of information exchanges in health care and uses this to reflect on the acceptability of the different consent mechanisms in the clinical workplace, as well as to consumers. Finally, the report develops a health transaction model and uses this to sketch the set of behaviors or services an e-Consent system will need to perform its key functions. Appendices contain detailed examples of information transactions in health and an example set of computational rules for determining consent.     

The Enhancement of Security in Healthcare Information Systems

With the progress and the development of information technology, the internal data in medical organizations have become computerized and are further established the medical information system. Moreover, the use of the Internet enhances the information communication as well as affects the development of the medical information system that a lot of medical information is transmitted with the Internet. Since there is a network within another network, when all networks are connected together, they will form the “Internet”. For this reason, the Internet is considered as a high-risk and public environment which is easily destroyed and invaded so that a relevant protection is acquired. Besides, the data in the medical network system are confidential that it is necessary to protect the personal privacy, such as electronic patient records, medical confidential information, and authorization-controlled data in the hospital. As a consequence, a medical network system is considered as a network requiring high security that excellent protections and managerial strategies are inevitable to prevent illegal events and external attacks from happening. This study proposes secure medical managerial strategies being applied to the network environment of the medical organization information system so as to avoid the external or internal information security events, allow the medical system to work smoothly and safely that not only benefits the patients, but also allows the doctors to use it more conveniently, and further promote the overall medical quality. The objectives could be achieved by preventing from illegal invasion or medical information being stolen, protecting the completeness and security of medical information, avoiding the managerial mistakes of the internal information system in medical organizations, and providing the highly-reliable medical information system.     

Alternatives to Project-specific Consent for Access to Personal Information for Health Research: What Is the Opinion of the Canadian Public?

Objectives

This study sought to determine public opinion on alternatives to project-specific consent for use of their personal information for health research.

Design

The authors conducted a fixed-response random-digit dialed telephone survey of 1,230 adults across Canada.

Measurements

We measured attitudes toward privacy and health research; trust in different institutions to keep information confidential; and consent choice for research use of one’s own health information involving medical record review, automated abstraction of information from the electronic medical record, and linking education or income with health data.

Results

Support was strong for both health research and privacy protection. Studying communicable diseases and quality of health care had greatest support (85% to 89%). Trust was highest for data institutes, university researchers, hospitals, and disease foundations (78% to 80%). Four percent of respondents thought information from their paper medical record should not be used at all for research, 32% thought permission should be obtained for each use, 29% supported broad consent, 24% supported notification and opt out, and 11% felt no need for notification or consent. Opinions were more polarized for automated abstraction of data from the electronic medical record. Respondents were more willing to link education with health data than income.

Conclusions

Most of the public supported alternatives to study-specific consent, but few supported use without any notification or consent. Consent choices for research use of one’s health information should be documented in the medical record. The challenge remains how best to elicit those choices and ensure that they are up-to-date.     

国外居民电子健康档案共享服务体系建设及启示

居民电子健康档案与区域卫生信息网络在全世界范围内正在成为医疗卫生信息化的前沿阵地。而区域卫生信息网络的核心是居民电子健康档案服务的共享。本文从组织机构、政策法规制定、数据共享标准和重视数据安全与隐私保护四方面介绍国外主要国家居民电子健康档案的共享服务体系建设,以期为我国共享服务体系建设提供借鉴。     

Openness of patients' reporting with use of electronic records: psychiatric clinicians' views

Objectives

Improvements in electronic health record (EHR) system development will require an understanding of psychiatric clinicians'' views on EHR system acceptability, including effects on psychotherapy communications, data-recording behaviors, data accessibility versus security and privacy, data quality and clarity, communications with medical colleagues, and stigma.

Design

Multidisciplinary development of a survey instrument targeting psychiatric clinicians who recently switched to EHR system use, focus group testing, data analysis, and data reliability testing.

Measurements

Survey of 120 university-based, outpatient mental health clinicians, with 56 (47%) responding, conducted 18 months after transition from a paper to an EHR system.

Results

Factor analysis gave nine item groupings that overlapped strongly with five a priori domains. Respondents both praised and criticized the EHR system. A strong majority (81%) felt that open therapeutic communications were preserved. Regarding data quality, content, and privacy, clinicians (63%) were less willing to record highly confidential information and disagreed (83%) with including their own psychiatric records among routinely accessed EHR systems.

Limitations

single time point; single academic medical center clinic setting; modest sample size; lack of prior instrument validation; survey conducted in 2005.

Conclusions

In an academic medical center clinic, the presence of electronic records was not seen as a dramatic impediment to therapeutic communications. Concerns regarding privacy and data security were significant, and may contribute to reluctances to adopt electronic records in other settings. Further study of clinicians'' views and use patterns may be helpful in guiding development and deployment of electronic records systems.     

Secure Dynamic Access Control Scheme of PHR in Cloud Computing

With the development of information technology and medical technology, medical information has been developed from traditional paper records into electronic medical records, which have now been widely applied. The new-style medical information exchange system "personal health records (PHR)" is gradually developed. PHR is a kind of health records maintained and recorded by individuals. An ideal personal health record could integrate personal medical information from different sources and provide complete and correct personal health and medical summary through the Internet or portable media under the requirements of security and privacy. A lot of personal health records are being utilized. The patient-centered PHR information exchange system allows the public autonomously maintain and manage personal health records. Such management is convenient for storing, accessing, and sharing personal medical records. With the emergence of Cloud computing, PHR service has been transferred to storing data into Cloud servers that the resources could be flexibly utilized and the operation cost can be reduced. Nevertheless, patients would face privacy problem when storing PHR data into Cloud. Besides, it requires a secure protection scheme to encrypt the medical records of each patient for storing PHR into Cloud server. In the encryption process, it would be a challenge to achieve accurately accessing to medical records and corresponding to flexibility and efficiency. A new PHR access control scheme under Cloud computing environments is proposed in this study. With Lagrange interpolation polynomial to establish a secure and effective PHR information access scheme, it allows to accurately access to PHR with security and is suitable for enormous multi-users. Moreover, this scheme also dynamically supports multi-users in Cloud computing environments with personal privacy and offers legal authorities to access to PHR. From security and effectiveness analyses, the proposed PHR access scheme in Cloud computing environments is proven flexible and secure and could effectively correspond to real-time appending and deleting user access authorization and appending and revising PHR records.     

Maintaining Security and Privacy in Health Care System Using Learning Based Deep-Q-Networks

In the recent past, Internet of Things (IoT) plays a significant role in different applications such as health care, industrial sector, defense and research etc.… It provides effective framework in maintaining the security, privacy and reliability of the information in internet environment. Among various applications as mentioned health care place a major role, because security, privacy and reliability of the medical information is maintained in an effective way. Even though, IoT provides the effective protocols for maintaining the information, several intermediate attacks and intruders trying to access the health information which in turn reduce the privacy, security and reliability of the entire health care system in internet environment. As a result and to solve the issues, in this research Learning based Deep-Q-Networks has been introduced for reducing the malware attacks while managing the health information. This method examines the medical information in different layers according to the Q-learning concept which helps to minimize the intermediate attacks with less complexity. The efficiency of the system has been evaluated with the help of experimental results and discussions.     

电子病案发展过程中存在的一些问题

评述实施电子病案(EletronicMedicalRecord,简称EMR)亟需注意和解决的问题。问题包括:EMR的归属、医护人员的态度、EMR系统的选择、标准问题、投入与回报、安全与隐私、EMR实用功能的开发等。这些问题对EMR的应用和推广的影响程度不同,解决途径也不尽相同。     

新医改以来我国全民健康信息化发展现况

阐述新医改以来我国全民健康信息化发展成效及存在的问题,从政策规划、重点领域系统建设、数据共享、健康医疗大数据应用、标准规范、信息安全及隐私保护等方面提出相关发展策略,以期对全民健康信息化发展有所启发。     

电子健康档案信息安全和隐私保护的关键问题和研究进展

大数据和云计算时代,电子健康档案的信息安全和隐私保护问题受到医疗卫生管理方、医疗服务提供方、患者个人三方的关注。通过系统性文献调研,对电子健康档案信息安全和隐私保护的概念进行界定,并以概览图和分析表为工具,梳理了电子健康档案信息安全和隐私保护的关键问题,介绍了当前国内外研究进展。     

A Privacy-Strengthened Scheme for E-Healthcare Monitoring System

Recent Advances in Wireless Body Area Networks (WBANs) offer unprecedented opportunities and challenges to the development of pervasive electronic healthcare (E-Healthcare) monitoring system. In E-Healthcare system, the processed data are patients' sensitive health data that are directly related to individuals' privacy. For this reason, privacy concern is of great importance for E-Healthcare system. Current existing systems for E-Healthcare services, however, have not yet provided sufficient privacy protection for patients. In order to offer adequate security and privacy, in this paper, we propose a privacy-enhanced scheme for patients' physical condition monitoring, which achieves dual effects: (1) providing unlinkability of health records and individual identity, and (2) supporting anonymous authentication and authorized data access. We also conduct a simulation experiment to evaluate the performance of the proposed scheme. The experimental results demonstrate that the proposed scheme achieves better performance in terms of computational complexity, communication overheads and querying efficiency compared with previous results.     

A Secure EHR System Based on Hybrid Clouds

Consequently, application services rendering remote medical services and electronic health record (EHR) have become a hot topic and stimulating increased interest in studying this subject in recent years. Information and communication technologies have been applied to the medical services and healthcare area for a number of years to resolve problems in medical management. Sharing EHR information can provide professional medical programs with consultancy, evaluation, and tracing services can certainly improve accessibility to the public receiving medical services or medical information at remote sites. With the widespread use of EHR, building a secure EHR sharing environment has attracted a lot of attention in both healthcare industry and academic community. Cloud computing paradigm is one of the popular healthIT infrastructures for facilitating EHR sharing and EHR integration. In this paper, we propose an EHR sharing and integration system in healthcare clouds and analyze the arising security and privacy issues in access and management of EHRs.     

美国健康信息交换平台对我国人口健康信息平台可持续运营的启示

通过分析美国健康信息交换平台行业发展的整体情况、合作网络、政府扶持政策和典型案例,提出了我国区域人口健康信息平台可持续运营的方式：根据区域人口规模而非行政层级确定资助平台数量,平台发展阶段采取不同的资助方式,以提高财政资金投入效率;鼓励社会资本进入,提供税收优惠政策,扶持社会组织运营平台;支持平台进行商业模式探索,为个人、医疗机构、药企等提供增值服务;制定统一的平台技术标准和法律协议,并建立平台隐私保护、安全问题的监管机制。     

云南部分农村群众对电子健康服务的可接受性调查

目的了解农村群众对电子健康服务的可接受性及其影响因素,为推进农村地区的电子健康服务提供科学依据.方法采用问卷调查和个人深入访谈988名村民,Epidata3.0录入、SPSS11.5分析数据.结果多数农村群众接触过电子设备或服务,电子健康的兼容性好.电子健康服务的好处为减少不合理的医药开支、使服务更及时、便捷及提高服务质量.65.9%的人认为使用电子健康服务不难.63.1%的人认为电子健康卡安全、保密性好.91%的人支持发展电子健康.结论在建立和推广电子健康服务的进程中,应重点关注服务的易用性和个人信息的保密性;宜在文化程度高、年轻的、接触过电脑或手机、接触电子设备多的人群中首先开展和推广电子健康.     

Legal issues affecting confidentiality and informed consent in reproductive health

The law governing confidentiality and informed consent has acquired unique characteristics in the area of reproductive health, as a consequence of both the establishment of a constitutional right to privacy in reproductive health matters and the reaction of those politically and morally opposed to the exercise of that right. The primary issues have involved: 1) the right of minors to receive reproductive health services without parental consent, which remains a political battleground; 2) laws requiring physicians to provide information to pregnant patients that is intended, not to inform them of the risks and benefits of the procedure, but to discourage them from obtaining abortions; 3) coerced and prohibited sterilizations; 4) court-ordered contraception and procedures to protect the fetus; and 5) restrictions on counseling about abortion, contraception, sterilization, and other reproductive health services authorized by state conscience or noncompliance clauses that shield such restrictions from the usual ethical, medical, and legal rules governing informed consent. The last area is of profound significance to the ability of women to make informed decisions about their reproductive health options. In the current economic environment, which fuels mergers and acquisitions involving sectarian and nonsectarian institutions, women are increasingly being put at risk as a result of such restrictions.     

Challenges Associated with Privacy in Health Care Industry: Implementation of HIPAA and the Security Rules

This paper discusses the challenges associated with privacy in health care in the electronic information age based on the Health Insurance Portability and Accountability Act (HIPAA) and the Security Rules. We examine the storing and transmission of sensitive patient data in the modern health care system and discuss current security practices that health care providers institute to comply with HIPAA Security Rule regulations. Based on our research results, we address current outstanding issues that act as impediments to the successful implementation of security measures and conclude the discussion and offer possible avenues of future research.     

Mobile Agent Application and Integration in Electronic Anamnesis System

Electronic anamnesis is to transform ordinary paper trails to digitally formatted health records, which include the patient’s general information, health status, and follow-ups on chronic diseases. Its main purpose is to let the records could be stored for a longer period of time and could be shared easily across departments and hospitals. Which means hospital management could use less resource on maintaining ever-growing database and reduce redundancy, so less money would be spent for managing the health records. In the foreseeable future, building up a comprehensive and integrated medical information system is a must, because it is critical to hospital resource integration and quality improvement. If mobile agent technology is adopted in the electronic anamnesis system, it would help the hospitals to make the medical practices more efficiently and conveniently. Nonetheless, most of the hospitals today are still using paper-based health records to manage the medical information. The reason why the institutions continue using traditional practices to manage the records is because there is no well-trusted and reliable electronic anamnesis system existing and accepted by both institutions and patients. The threat of privacy invasion is one of the biggest concerns when the topic of electronic anamnesis is brought up, because the security threats drag us back from using such a system. So, the medical service quality is difficult to be improved substantially. In this case, we have come up a theory to remove such security threats and make electronic anamnesis more appealing for use. Our theory is to integrate the mobile agent technology with the backbone of electronic anamnesis to construct a hierarchical access control system to retrieve the corresponding information based upon the permission classes. The system would create a classification for permission among the users inside the medical institution. Under this framework, permission control center would distribute an access key to each user, so they would only allow using the key to access information correspondingly. In order to verify the reliability of the proposed system framework, we have also conducted a security analysis to list all the possible security threats that may harm the system and to prove the system is reliable and safe. If the system is adopted, the doctors would be able to quickly access the information while performing medical examinations. Hence, the efficiency and quality of healthcare service would be greatly improved.     

National health information privacy: regulations under the Health Insurance Portability and Accountability Act.

Health information privacy is important in US society, but existing federal and state law does not offer adequate protection. The Department of Health and Human Services, under powers granted by the Health Insurance Portability and Accountability Act of 1996, recently issued a final rule providing systematic, nationwide health information privacy protection. The rule is extensive in its scope, applying to health plans, health care clearinghouses, and health care providers (hospitals, clinics, and health departments) who conduct financial transactions electronically ("covered entities"). The rule applies to personally identifiable information in any form, whether communicated electronically, on paper, or orally. The rule does not preempt state law that affords more stringent privacy protection; thus, the health care industry will have to comply with multiple layers of federal and state law. The rule affords patients rights to education about privacy safeguards, access to their medical records, and a process for correction of records. It also requires the patient's permission for disclosures of personal information. While privacy is an important value, it may conflict with public responsibilities to use data for social goods. The rule has special provisions for disclosure of health information for research, public health, law enforcement, and commercial marketing. The privacy debate will continue in Congress and within the president's administration. The primary focus will be on the costs and burdens on health care providers, the ability of health care professionals to use and share full medical information when treating patients, the provision of patient care in a timely and efficient manner, and parents' access to information about the health of their children.     

Biometrics for Electronic Health Records

Securing electronic health records, in scenarios in which the provision of care services is share among multiple actors, could become a complex and costly activity. Correct identification of patients and physician, protection of privacy and confidentiality, assignment of access permissions for healthcare providers and resolutions of conflicts rise as main points of concern in the development of interconnected health information networks. Biometric technologies have been proposed as a possible technological solution for these issues due to its ability to provide a mechanism for unique verification of an individual identity. This paper presents an analysis of the benefit as well as disadvantages offered by biometric technology. A comparison between this technology and more traditional identification methods is used to determine the key benefits and flaws of the use biometric in health information systems. The comparison as been made considering the viability of the technologies for medical environments, global security needs, the contemplation of a share care environment and the costs involved in the implementation and maintenance of such technologies. This paper also discusses alternative uses for biometrics technologies in health care environments. The outcome of this analysis lays in the fact that even when biometric technologies offer several advantages over traditional method of identification, they are still in the early stages of providing a suitable solution for a health care environment.