The health care information directive

BACKGROUND: Developments in information technology promise to revolutionise the delivery of health care by providing access to data in a timely and efficient way. Information technology also raises several important concerns about the confidentiality and privacy of health data. New and existing legislation in Europe and North America may make access to patient level data difficult with consequent impact on research and health surveillance. Although research is being conducted on technical solutions to protect the privacy of personal health information, there is very little research on ways to improve individuals power over their health information. This paper proposes a health care information directive, analogous to an advance directive, to facilitate choices regarding health information disclosure. RESULTS AND DISCUSSION: A health care information directive is described which creates a decision matrix that combines the ethical appropriateness of the use of personal health information with the sensitivity of the data. It creates a range of possibilities with in which individuals can choose to contribute health information with or without consent, or not to contribute information at all. CONCLUSION: The health care information directive may increase individuals understanding of the uses of health information and increase their willingness to contribute certain kinds of health information. Further refinement and evaluation of the directive is required

DNA databanks and consent: A suggested policy option involving an authorization model

BACKGROUND: Genetic databases are becoming increasingly common as a means of determining the relationship between lifestyle, environmental exposures and genetic diseases. These databases rely on large numbers of research subjects contributing their genetic material to successfully explore the genetic basis of disease. However, as all possible research questions that can be posed of the data are unknown, an unresolved ethical issue is the status of informed consent for future research uses of genetic material. DISCUSSION: In this paper, we discuss the difficulties of an informed consent model for future ineffable uses of genetic data. We argue that variations on consent, such as presumed consent, blanket consent or constructed consent fail to meet the standards required by current informed consent doctrine and are distortions of the original concept. In this paper, we propose the concept of an authorization model whereby participants in genetic data banks are able to exercise a certain amount of control over future uses of genetic data. We argue this preserves the autonomy of individuals at the same time as allowing them to give permission and discretion to researchers for certain types of research. SUMMARY: The authorization model represents a step forward in the debate about informed consent in genetic databases. The move towards an authorization model would require changes in the regulatory and legislative environments. Additionally, empirical support of the utility and acceptability of authorization is required

Privacy in context : the costs and benefits of a new deidentification method

Thesis (Ph. D.)--Massachusetts Institute of Technology, Dept. of Electrical Engineering and Computer Science, 2006.Includes bibliographical references (leaves 131-150).The American public continues to be concerned about medical privacy. Policy research continues to show people's demand for health organizations to protect patient-specific data. Health organizations need personally identifiable data for unhampered decision making; however, identifiable data are often the basis of information abuse if such data are improperly disclosed. This thesis shows that health organizations may use deidentified data for key routine organizational operations. I construct a technology adoption model and investigate if a for-profit health insurer could use deidentified data for key internal software quality management applications. If privacy-related data are analyzed without rigor, little support is found to incorporate more privacy protections into such applications. Legal and financial motivations appear lacking. Adding privacy safeguards to such software programs apparently doesn't improve policy-holder care quality. Existing technical approaches do not readily allow for data deidentification while permitting key computations within the applications. A closer analysis of data reaches different conclusions. I describe the bills that are currently passing through Congress to mitigate abuses of identifiable data that exist within organizations.(cont.) I create a cost and medical benefits model demonstrating the financial losses to the insurer and medical losses to its policy-holders due to less privacy protection within the routine software applications. One of the model components describes the Predictive Modeling application (PMA), used to identify an insurer's chronically-ill policy-holders. Disease management programs can enhance the care and reduce the costs of such individuals because improving such people's health can reduce costs to the paying organization. The model quantifies the decrease in care and rise in the insurer's claim costs as the PMA must work with suboptimal data due to policy-holders' privacy concerns regarding the routine software applications. I create a model for selecting variables to improve data linkage in software applications in general. An encryption-based approach, which allows for the secure linkage of records despite errors in linkage variables, is subsequently constructed. I test this approach as part of a general data deidentification method on an actual PMA used by health insurers. The PMA's performance is found to be the same as if executing on identifiable data.by Stanley Trepetin.Ph.D

Feasibility of a patient decision aid regarding disclosure of personal health information: qualitative evaluation of the Health Care Information Directive

Abstract Background Concerns regarding the privacy of health information are escalating owing both to the growing use of information technology to store and exchange data and to the increasing demand on the part of patients to control the use of their medical records. The objective of this study was to evaluate the Health Care Information Directive (HCID), a recently-developed patient decision aid that aims to delineate the level of health information an individual is willing to share. Methods We convened a series of four focus group meetings with several communities in a large Canadian city. A total of 28 men and women participated, representing health care consumer advocates, urban professionals, senior citizens, and immigrants who speak English as a second language. Data were analysed using qualitative methods. Results Participants lacked substantial knowledge regarding the fate and uses of personal health information. They expressed mistrust concerning how their information will be used and protected. Several suggestions were made towards customizing the use of data according to specific needs rather than broad and full access to their charts. Furthermore, despite concern regarding the implementation of a tool like the HCID, participants were hopeful that a refined instrument could contribute to the improved regulation of health information. Conclusion This study indicated poor knowledge concerning the uses of personal health information, distrust concerning security provisions, and cautious support for a patient decision aid such as the HCID to improve control over health data

Feasibility of a patient decision aid regarding disclosure of personal health information: qualitative evaluation of the Health Care Information Directive

BACKGROUND: Concerns regarding the privacy of health information are escalating owing both to the growing use of information technology to store and exchange data and to the increasing demand on the part of patients to control the use of their medical records. The objective of this study was to evaluate the Health Care Information Directive (HCID), a recently-developed patient decision aid that aims to delineate the level of health information an individual is willing to share. METHODS: We convened a series of four focus group meetings with several communities in a large Canadian city. A total of 28 men and women participated, representing health care consumer advocates, urban professionals, senior citizens, and immigrants who speak English as a second language. Data were analysed using qualitative methods. RESULTS: Participants lacked substantial knowledge regarding the fate and uses of personal health information. They expressed mistrust concerning how their information will be used and protected. Several suggestions were made towards customizing the use of data according to specific needs rather than broad and full access to their charts. Furthermore, despite concern regarding the implementation of a tool like the HCID, participants were hopeful that a refined instrument could contribute to the improved regulation of health information. CONCLUSION: This study indicated poor knowledge concerning the uses of personal health information, distrust concerning security provisions, and cautious support for a patient decision aid such as the HCID to improve control over health data

Feasibility of a patient decision aid regarding disclosure of personal health information: qualitative evaluation of the Health Care Information Directive

Abstract Background Concerns regarding the privacy of health information are escalating owing both to the growing use of information technology to store and exchange data and to the increasing demand on the part of patients to control the use of their medical records. The objective of this study was to evaluate the Health Care Information Directive (HCID), a recently-developed patient decision aid that aims to delineate the level of health information an individual is willing to share. Methods We convened a series of four focus group meetings with several communities in a large Canadian city. A total of 28 men and women participated, representing health care consumer advocates, urban professionals, senior citizens, and immigrants who speak English as a second language. Data were analysed using qualitative methods. Results Participants lacked substantial knowledge regarding the fate and uses of personal health information. They expressed mistrust concerning how their information will be used and protected. Several suggestions were made towards customizing the use of data according to specific needs rather than broad and full access to their charts. Furthermore, despite concern regarding the implementation of a tool like the HCID, participants were hopeful that a refined instrument could contribute to the improved regulation of health information. Conclusion This study indicated poor knowledge concerning the uses of personal health information, distrust concerning security provisions, and cautious support for a patient decision aid such as the HCID to improve control over health data.</p