Enhancing the Availability of Electronic Health Records for Secondary Purposes – A Case Study

Due to the sensitive nature of patient data, the secondary use of electronic health records (EHR) is restricted in scientific research and product development. Such restrictions pursue to preserve the privacy of respective patients by limiting the availability and variety of sensitive patient data. Current limitations do not correspond with the actual needs requested by the potential secondary users. In this thesis, the secondary use of Finnish and Swedish EHR data is explored for the purpose of enhancing the availability of such data for clinical research and product development. Involved EHR-related procedures and technologies are analysed to identify the issues limiting the secondary use of patient data. Successful secondary use of patient data increases the data value. To explore the identified circumstances, a case study of potential secondary users and use intentions regarding EHR data was carried out in Finland and Sweden. The data collection for the conducted case study was performed using semi-structured interviews. In total, 14 Finnish and Swedish experts representing scientific research, health management, and business were interviewed. The motivation for the corresponding interviews was to evaluate the protection of EHR data used for secondary purposes. The efficiency of implemented procedures and technologies was analysed in terms of data availability and privacy preserving. The results of the conducted case study show that the factors affecting EHR availability are divided to three categories: management of patient data, preservation of patients' privacy, and potential secondary users. Identified issues regarding data management included laborious and inconsistent data request procedures and the role and effect of external service providers. Based on the study findings, two secondary use approaches enabling the secondary use of EHR data are identified: data alteration and protected processing environment. Data alteration increases the availability of relevant EHR data, further decreasing the value of such data. Protected processing approach restricts the amount of potential users and use intentions while providing more valuable data content.

THE EFFECT OF EASTERN KENTUCKY COAL FIRES ON LOCAL AIR QUALITY AND PERSONAL HEALTH

The purpose of this project was to investigate student learning in the areas of earth science and environmental responsibility using the subject of coal fires. Eastern Kentucky, where this study was performed, has several coal fires burning that affect the local air quality and may also affect the health of people living near them. This study was conducted during the regular education of 9th grade Earth Science classroom in Russell Independent Schools, located in Russell, Kentucky. Students conducted internet research, read current articles on the subject of coal fire emissions and effect on local ecology, and demonstrated what they learned through summative assessments. There were several aspects of coalmines and coal fires that students studied. Students were able to take this knowledge and information and use it as a learning tool to gain a better understanding of their own environment. Using the local history and geology of coalmines, along with the long tradition of mine production, was a very beneficial starting point, allowing students to learn about environmental impact, stewardship of their local environment, and methods of preserving and protecting the ecosystem.

Sharing with care : an information accountability perspective

Health information sharing has become a vital part of modern healthcare delivery. E-health technologies provide efficient and effective ways of sharing medical information, but give rise to issues that neither the medical professional nor the consumers have control over. Information security and patient privacy are key impediments that hinder sharing information as sensitive as health information. Health information interoperability is another issue which hinders the adoption of available e health technologies. In this paper we propose a solution for these problems in terms of information accountability, the HL7 interoperability standard and social networks for manipulating personal health records.

The Australian general public's perceptions of having a personally controlled electronic health record (PCEHR)

Objective The move internationally by Governments and other health providers to encourage patients to have their own electronic personal health record (e-PHRs) is growing exponentially. In Australia the initiative for a personally controlled electronic health record (known as PCEHR) is directed towards the public at large. The first objective of this study then, is to examine how individuals in the general population perceive the promoted idea of having a PCEHR. The second objective is to extend research on applying a theoretically derived consumer technology acceptance model to guide the research. Method An online survey was conducted to capture the perceptions and beliefs about having a PCEHR identified from technology acceptance models and extant literature. The survey was completed by 750 Queensland respondents, 97% of whom did not have a PCEHR at that time. The model was examined using exploratory factor analysis, regressions and mediation tests. Results Findings support eight of the 11 hypothesised relationships in the model. Perceived value and perceived risk were the two most important variables explaining attitude, with perceived usefulness and compatibility being weak but significant. The perception of risk was reduced through partial mediation from trust and privacy concerns. Additionally, web-self efficacy and ease of use partially mediate the relationship between attitude and intentions. Conclusions The findings represent a snapshot of the early stages of implementing this Australian initiative and captures the perceptions of Queenslanders who at present do not have a PCEHR. Findings show that while individuals appreciate the value of having this record, they do not appear to regard it as particularly useful at present, nor is it particularly compatible with their current engagement with e-services. Moreover, they will need to have any concerns about the risks alleviated, particularly through an increased sense of trust and reduction of privacy concerns. It is noted that although the respondents are non-adopters, they do not feel that they lack the necessary web skills to set up and use a PCEHR. To the best of our knowledge this is one of a very limited number of studies that examines a national level implementation of an e-PHR system, where take-up of the PCEHR is optional rather than a centralised, mandated requirement.

Information accountability and health big data analytics: A consent-based model

With the ever increasing amount of eHealth data available from various eHealth systems and sources, Health Big Data Analytics promises enticing benefits such as enabling the discovery of new treatment options and improved decision making. However, concerns over the privacy of information have hindered the aggregation of this information. To address these concerns, we propose the use of Information Accountability protocols to provide patients with the ability to decide how and when their data can be shared and aggregated for use in big data research. In this paper, we discuss the issues surrounding Health Big Data Analytics and propose a consent-based model to address privacy concerns to aid in achieving the promised benefits of Big Data in eHealth.

Managing and sharing health data through information accountability protocols

Concerns over the security and privacy of patient information are one of the biggest hindrances to sharing health information and the wide adoption of eHealth systems. At present, there are competing requirements between healthcare consumers' (i.e. patients) requirements and healthcare professionals' (HCP) requirements. While consumers want control over their information, healthcare professionals want access to as much information as required in order to make well-informed decisions and provide quality care. In order to balance these requirements, the use of an Information Accountability Framework devised for eHealth systems has been proposed. In this paper, we take a step closer to the adoption of the Information Accountability protocols and demonstrate their functionality through an implementation in FluxMED, a customisable EHR system.

Preadolescents and Their Mothers as Oral Health-Promoting Actors : Non-biologic Determinants of Oral Health among Turkish and Finnish Preadolescents

Is oral health becoming a part of the global health culture? Oral health seems to turn out to be part of the global health culture, according to the findings of a thesis-research, Institute of Dentistry, University of Helsinki. The thesis is entitled as “Preadolescents and Their Mothers as Oral Health-Promoting Actors: Non-biologic Determinants of Oral Health among Turkish and Finnish Preadolescents.” The research was supervised by Prof.Murtomaa and led by Dr.A.Basak Cinar. It was conducted as a cross-sectional study of 611 Turkish and 223 Finnish school preadolescents in Istanbul and Helsinki, from the fourth, fifth, and sixth grades, aged 10 to 12, based on self-administered and pre-tested health behavior questionnaires for them and their mothers as well as the youth’s oral health records. Clinically assessed dental status (DMFT) and self-reported oral health of Turkish preadolescents was significantly poorer than the Finns`. A similar association occurred for well-being measures (height and weight, self-esteem), but not for school performance. Turkish preadolescents were more dentally anxious and reported lower mean values of toothbrushing self-efficacy and dietary self-efficacy than did Finns. The Turks less frequently reported recommended oral health behaviors (twice daily or more toothbrushing, sweet consumption on 2 days or less/week, decreased between-meal sweet consumption) than did the Finns. Turkish mothers reported less frequently dental health as being above average and recommended oral health behaviors as well as regular dental visits. Their mean values for dental anxiety was higher and self-efficacy on implementation of twice-daily toothbrushing were lower than those of the Finnish. Despite these differences between the Turks and Finns, the associations found in common for all preadolescents, regardless of cultural differences and different oral health care systems, assessed for the first time in a holistic framework, were as follows: There seems to be interrelation between oral health and general-well being (body height-weight measures, school performance, and self-esteem) among preadolescents: • The body height was an explanatory factor for dental health, underlining the possible common life-course factors for dental health and general well-being. • Better school performance, high levels of self-esteem and self-efficacy were interrelated and they contributed to good oral health. • Good school performance was a common predictor for twice-daily toothbrushing. Self-efficacy and maternal modelling have significant role for maintenance and improvement of both oral- and general health- related behaviors. In addition, there is need for integration of self-efficacy based approaches to promote better oral health. • All preadolescents with high levels of self-efficacy were more likely to report more frequent twice-daily toothbrushing and less frequent sweet consumption. • All preadolescents were likely to imitate toothbrushing and sweet consumption behaviors of their mothers. • High levels of self-efficacy contributed to low dental anxiety in various patterns in both groups. As a conclusion: • Many health-detrimental behaviors arise from the school age years and are unlikely to change later. Schools have powerful influences on children’s development and well-being. Therefore, oral health promotion in schools should be integrated into general health promotion, school curricula, and other activities. • Health promotion messages should be reinforced in schools, enabling children and their families to develop lifelong sustainable positive health-related skills (self-esteem, self-efficacy) and behaviors. • Placing more emphasis on behavioral sciences, preventive approaches, and community-based education during undergraduate studies should encourage social responsibility and health-promoting roles among dentists. Attempts to increase general well-being and to reduce oral health inequalities among preadolescents will remain unsuccessful if the individual factors, as well as maternal and societal influences, are not considered by psycho-social holistic approaches.

Does Cost-Effectiveness Analysis Have a Role in US Managed Care Drug Formularies? An Empirical Study of Utilization, Costs, Outcomes, and Elasticity of Demand of a Value-Based Formulary

Thesis (Ph.D.)--University of Washington, 2015

Lessons for emerging state Children's Health Insurance Premium Assistance programs: Case study of the Massachusetts Masshealth Family Assistance Program (MHFAP)

Providing health insurance coverage for vulnerable populations such as low-income high-risk children with limited access to health care is a challenge for many states. Over the past decade, higher private insurance premiums and unpredictable labor markets have increased the number of uninsured and underinsured children nationwide. Due to recent economic downfalls, many states such as Texas, have expressed interest in using premium assistance programs to increase enrollment of low income children and families in private coverage through employer sponsored health insurance. Massachusetts has been especially successful in reducing the number of uninsured children through the implementation of MassHealth Family Assistance Program (MHFAP), an employer based premium assistance program. The purpose of this study is to identify key implementation factors of a fully established premium assistance program which may provide lessons and facilitate implementation of emerging premium assistance programs. ^ The case study of the fully established MassHealth Family Assistance Program (MHFAP) has illustrated the ability of states to expand their Medicaid and SCHIP programs in order to provide affordable health coverage to uninsured and underinsured low income children and their families. As demonstrated by MHFAP, the success of a premium assistance program depends on four key factors: (1) determination of participant and employer eligibility; (2) determination of employer benefits meeting benchmark equivalency (Medicaid or State Children's Health Insurance Program); (3) the use of appropriate marketing and outreach strategies; and (4) establishment of adequate monitoring and reporting techniques. Successful implementation strategies, revealed by the case study of the Massachusetts MassHealth Family Assistance Program, may be used by emerging premium assistance programs, such as Texas Children's Health Insurance Premium Assistance Program (CHIP-PA) toward establishment of an effective, efficient, and equitable employer sponsored health program.^

Priorities in health statistics : proceedings of the 19th national meeting of the Public Health Conference on Records and Statistics, August 1983.

Mode of access: Internet.

A time-variant medical data trustworthiness assessment model

Electronic Health Record (EHR) systems are being introduced to overcome the limitations associated with paper-based and isolated Electronic Medical Record (EMR) systems. This is accomplished by aggregating medical data and consolidating them in one digital repository. Though an EHR system provides obvious functional benefits, there is a growing concern about the privacy and reliability (trustworthiness) of Electronic Health Records. Security requirements such as confidentiality, integrity, and availability can be satisfied by traditional hard security mechanisms. However, measuring data trustworthiness from the perspective of data entry is an issue that cannot be solved with traditional mechanisms, especially since degrees of trust change over time. In this paper, we introduce a Time-variant Medical Data Trustworthiness (TMDT) assessment model to evaluate the trustworthiness of medical data by evaluating the trustworthiness of its sources, namely the healthcare organisation where the data was created and the medical practitioner who diagnosed the patient and authorised entry of this data into the patient’s medical record, with respect to a certain period of time. The result can then be used by the EHR system to manipulate health record metadata to alert medical practitioners relying on the information to possible reliability problems.

Ageing, learning, technology, and health management

The world’s population is ageing rapidly. Ageing has an impact on all aspects of human life, including social, economic, cultural, and political. Understanding ageing is therefore an important issue for the 21st century. This chapter will consider the active ageing model. This model is based on optimising opportunities for health, participation, and security in order to enhance quality of life. There is a range of exciting options developing for personal health management, for and by the ageing population, that make use of computer technology, and these should support active ageing. Their use depends however on older people learning to use computer technology effectively. The ability to use such technology will allow them to access relevant health information, advice, and support independently from wherever they live. Such support should increase rapidly in the future. This chapter is a consideration of ageing and learning, ageing and use of computer technology, and personal health management using computers.

Health law in Australia

Health Law in Australia is the first book to deal with health law on a comprehensive national basis. In a field of law that is becoming increasingly important and where the demand for expertise is rapidly expanding, Health Law in Australia takes a logical, structured approach to an examination of the law in all Australian jurisdictions. By covering all the major areas in this diverse field of law, Health Law in Australia enhances the understanding of the discipline as a whole. Beginning with an exploration of the general principles of health law, including chapters on “Medical Negligence”, “Children and Consent”, and “Confidentiality, Privacy, and Access to Health Records”, the book goes on to consider beginning-of-life and end-of-life issues before concluding with chapters on emerging areas in health law, such as biotechnology and medical research. The contributing authors include national leaders in the field who are specialists in these areas of health law and who can therefore reveal to readers the results of their research. Health Law in Australia has been written for those with a legal background and is essential reading for undergraduate law students, postgraduate law students, researchers and scholars in the disciplines of law, health and medicine, as well as legal practitioners, government departments and bodies in the health area, and private health providers.

Semantic search and inferencing in health informatics

Consider a person searching electronic health records, a search for the term ‘cracked skull’ should return documents that contain the term ‘cranium fracture’. A information retrieval systems is required that matches concepts, not just keywords. Further more, determining relevance of a query to a document requires inference – its not simply matching concepts. For example a document containing ‘dialysis machine’ should align with a query for ‘kidney disease’. Collectively we describe this problem as the ‘semantic gap’ – the difference between the raw medical data and the way a human interprets it. This paper presents an approach to semantic search of health records by combining two previous approaches: an ontological approach using the SNOMED CT medical ontology; and a distributional approach using semantic space vector space models. Our approach will be applied to a specific problem in health informatics: the matching of electronic patient records to clinical trials.

An architecture for enhanced assurance in e-health systems

Notwithstanding the obvious potential advantages of information and communications technology (ICT) in the enhanced provision of healthcare services, there are some concerns associated with integration of and access to electronic health records. A security violation in health records, such as an unauthorised disclosure or unauthorised alteration of an individual's health information, can significantly undermine both healthcare providers' and consumers' confidence and trust in e-health systems. A crisis in confidence in any national level e-health system could seriously degrade the realisation of the system's potential benefits. In response to the privacy and security requirements for the protection of health information, this research project investigated national and international e-health development activities to identify the necessary requirements for the creation of a trusted health information system architecture consistent with legislative and regulatory requirements and relevant health informatics standards. The research examined the appropriateness and sustainability of the current approaches for the protection of health information. It then proposed an architecture to facilitate the viable and sustainable enforcement of privacy and security in health information systems under the project title "Open and Trusted Health Information Systems (OTHIS)". OTHIS addresses necessary security controls to protect sensitive health information when such data is at rest, during processing and in transit with three separate and achievable security function-based concepts and modules: a) Health Informatics Application Security (HIAS); b) Health Informatics Access Control (HIAC); and c) Health Informatics Network Security (HINS). The outcome of this research is a roadmap for a viable and sustainable architecture for providing robust protection and security of health information including elucidations of three achievable security control subsystem requirements within the proposed architecture. The successful completion of two proof-of-concept prototypes demonstrated the comprehensibility, feasibility and practicality of the HIAC and HIAS models for the development and assessment of trusted health systems. Meanwhile, the OTHIS architecture has provided guidance for technical and security design appropriate to the development and implementation of trusted health information systems whilst simultaneously offering guidance for ongoing research projects. The socio-economic implications of this research can be summarised in the fact that this research embraces the need for low cost security strategies against economic realities by using open-source technologies for overall test implementation. This allows the proposed architecture to be publicly accessible, providing a platform for interoperability to meet real-world application security demands. On the whole, the OTHIS architecture sets a high level of security standard for the establishment and maintenance of both current and future health information systems. This thereby increases healthcare providers‘ and consumers‘ trust in the adoption of electronic health records to realise the associated benefits.