27,849 research outputs found
Privacy and Accountability in Black-Box Medicine
Black-box medicine—the use of big data and sophisticated machine learning techniques for health-care applications—could be the future of personalized medicine. Black-box medicine promises to make it easier to diagnose rare diseases and conditions, identify the most promising treatments, and allocate scarce resources among different patients. But to succeed, it must overcome two separate, but related, problems: patient privacy and algorithmic accountability. Privacy is a problem because researchers need access to huge amounts of patient health information to generate useful medical predictions. And accountability is a problem because black-box algorithms must be verified by outsiders to ensure they are accurate and unbiased, but this means giving outsiders access to this health information.
This article examines the tension between the twin goals of privacy and accountability and develops a framework for balancing that tension. It proposes three pillars for an effective system of privacy-preserving accountability: substantive limitations on the collection, use, and disclosure of patient information; independent gatekeepers regulating information sharing between those developing and verifying black-box algorithms; and information-security requirements to prevent unintentional disclosures of patient information. The article examines and draws on a similar debate in the field of clinical trials, where disclosing information from past trials can lead to new treatments but also threatens patient privacy
A PRIVACY MANAGEMENT ARCHITECTURE FOR PATIENT-CONTROLLED PERSONAL HEALTH RECORD SYSTEM
Patient-controlled personal health record systems can help make health care safer, cheaper, and more convenient by facilitating patients to 1) grant any care provider access to their complete personal health records anytime from anywhere, 2) avoid repeated tests and 3) control their privacy transparently. In this paper, we present the architecture of our Privacy-aware Patient-controlled Personal Health Record (P3HR) system through which a patient can view her integrated health history, and share her health information transparently with others (e.g., healthcare providers). Access to the health information of a particular patient is completely controlled by that patient. We also carry out intuitive security and privacy analysis of the P3HR system architecture considering different types of security attacks. Finally, we describe a prototype implementation of the P3HR systemď€ that we developed reflecting the special view of Japanese society. The most important advantage of P3HR system over other existing systems is that most likely P3HR system provides complete privacy protection without losing data accuracy. Unlike traditional partially anonymous health records (e.g., using k-anonymity or l-diversity), the health records in P3HR are closer to complete anonymity, and yet preserve data accuracy. Our approach makes it very unlikely that patients could be identified by an attacker from their anonymous health records in the P3HR system
Privacy in the Genomic Era
Genome sequencing technology has advanced at a rapid pace and it is now
possible to generate highly-detailed genotypes inexpensively. The collection
and analysis of such data has the potential to support various applications,
including personalized medical services. While the benefits of the genomics
revolution are trumpeted by the biomedical community, the increased
availability of such data has major implications for personal privacy; notably
because the genome has certain essential features, which include (but are not
limited to) (i) an association with traits and certain diseases, (ii)
identification capability (e.g., forensics), and (iii) revelation of family
relationships. Moreover, direct-to-consumer DNA testing increases the
likelihood that genome data will be made available in less regulated
environments, such as the Internet and for-profit companies. The problem of
genome data privacy thus resides at the crossroads of computer science,
medicine, and public policy. While the computer scientists have addressed data
privacy for various data types, there has been less attention dedicated to
genomic data. Thus, the goal of this paper is to provide a systematization of
knowledge for the computer science community. In doing so, we address some of
the (sometimes erroneous) beliefs of this field and we report on a survey we
conducted about genome data privacy with biomedical specialists. Then, after
characterizing the genome privacy problem, we review the state-of-the-art
regarding privacy attacks on genomic data and strategies for mitigating such
attacks, as well as contextualizing these attacks from the perspective of
medicine and public policy. This paper concludes with an enumeration of the
challenges for genome data privacy and presents a framework to systematize the
analysis of threats and the design of countermeasures as the field moves
forward
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Improving School Improvement
PREFACEIn opening this volume, you might be thinking:Is another book on school improvement really needed?Clearly our answer is yes. Our analyses of prevailing school improvement legislation, planning, and literature indicates fundamental deficiencies, especially with respect to enhancing equity of opportunity and closing the achievement gap.Here is what our work uniquely brings to policy and planning tables:(1) An expanded framework for school improvement – We highlight that moving from a two- to a three-component policy and practice framework is essential for closing the opportunity and achievement gaps. (That is, expanding from focusing primarily on instruction and management/government concerns by establishing a third primary component to improve how schools address barriers to learning and teaching.)(2) An emphasis on integrating a deep understanding of motivation – We underscore that concerns about engagement, management of behavior, school climate, equity of opportunity, and student outcomes require an up-to-date grasp of motivation and especially intrinsic motivation.(3) Clarification of the nature and scope of personalized teaching – We define personalization as the process of matching learner motivation and capabilities and stress that it is the learner's perception that determines whether the match is a good one.(4) A reframing of remediation and special education – We formulate these processes as personalized special assistance that is applied in and out of classrooms and practiced in a sequential and hierarchical manner.(5) A prototype for transforming student and learning supports – We provide a framework for a unified, comprehensive, and equitable system designed to address barriers to learning and teaching and re-engage disconnected students and families.(6) A reworking of the leadership structure for whole school improvement --We outline how the operational infrastructure can and must be realigned in keeping with a three component school improvement framework.(7) A systemic approach to enhancing school-community collaboration – We delineate a leadership role for schools in outreaching to communities in order to work on shared concerns through a formal collaborative operational infrastructure that enables weaving together resources to advance the work.(8) An expanded framework for school accountability – We reframe school accountability to ensure a balanced approach that accounts for a shift to a three component school improvement policy.(9) Guidance for substantive, scalable, and sustainable systemic changes –We frame mechanisms and discuss lessons learned related to facilitating fundamental systemic changes and replicating and sustaining them across a district.The frameworks and practices presented are based on our many years of work in schools and from efforts to enhance school-community collaboration. We incorporate insights from various theories and the large body of relevant research and from lessons learned and shared by many school leaders and staff who strive everyday to do their best for children.Our emphasis on new directions in no way is meant to demean current efforts. We know that the demands placed on those working in schools go well beyond what anyone should be asked to do. Given the current working conditions in many schools, our intent is to help make the hard work generate better results. To this end, we highlight new directions and systemic pathways for improving school outcomes.Some of what we propose is difficult to accomplish. Hopefully, the fact that there are schools, districts, and state agencies already trailblazing the way will engender a sense of hope and encouragement to those committed to innovation.It will be obvious that our work owes much to many. We are especially grateful to those who are pioneering major systemic changes across the country. These leaders and so many in the field have generously offered their insights and wisdom. And, of course, we are indebted to hundreds of scholars whose research and writing is a shared treasure. As always, we take this opportunity to thank Perry Nelson and the host of graduate and undergraduate students at UCLA who contribute so much to our work each day, and to the many young people and their families who continue to teach us all.Respectfully submitted for your consideration,Howard Adelman & Linda Taylo
Bringing health and fitness data together for connected health care: Mobile apps as enablers of interoperability
Background: A transformation is underway regarding how we deal with our health. Mobile devices make it possible to have continuous access to personal health information. Wearable devices, such as Fitbit and Apple's smartwatch, can collect data continuously and provide insights into our health and fitness. However, lack of interoperability and the presence of data silos prevent users and health professionals from getting an integrated view of health and fitness data. To provide better health outcomes, a complete picture is needed which combines informal health and fitness data collected by the user together with official health records collected by health professionals. Mobile apps are well positioned to play an important role in the aggregation since they can tap into these official and informal health and data silos. Objective: The objective of this paper is to demonstrate that a mobile app can be used to aggregate health and fitness data and can enable interoperability. It discusses various technical interoperability challenges encountered while integrating data into one place. Methods: For 8 years, we have worked with third-party partners, including wearable device manufacturers, electronic health record providers, and app developers, to connect an Android app to their (wearable) devices, back-end servers, and systems. Results: The result of this research is a health and fitness app called myFitnessCompanion, which enables users to aggregate their data in one place. Over 6000 users use the app worldwide to aggregate their health and fitness data. It demonstrates that mobile apps can be used to enable interoperability. Challenges encountered in the research process included the different wireless protocols and standards used to communicate with wireless devices, the diversity of security and authorization protocols used to be able to exchange data with servers, and lack of standards usage, such as Health Level Seven, for medical information exchange. Conclusions: By limiting the negative effects of health data silos, mobile apps can offer a better holistic view of health and fitness data. Data can then be analyzed to offer better and more personalized advice and care
Self-Tracking, Social Media and Personal Health Records for Patient Empowered Self-Care
Objectives: This paper explores the range of self-tracking devices and social media platforms used by the self-tracking community, and examines the implications of widespread adoption of these tools for scientific progress in health informatics. Methods: A literature review was performed to investigate the use of social media and self-tracking technologies in the health sector. An environmental scan identified a range of products and services which were used to exemplify three levels of self-tracking: self-experi- mentation, social sharing of data and patient controlled electronic health records. Results: There appears to be an increase in the use of self-tracking tools, particularly in the health and fitness sector, but also used in the management of chronic diseases. Evidence of efficacy and effectiveness is limited to date, primarily due to the health and fitness focus of current solutions as opposed to their use in dis- ease management. Conclusions: Several key technologies are converging to produce a trend of increased personal health surveillance and monitoring, so- cial connectedness and sharing, and integration of regional and national health information systems. These trends are enabling new applications of scientific techniques, from personal experimentation to e-epidemiology, as data gathered by individuals are aggregated and shared across increasingly connected healthcare networks. These trends also raise significant new ethical and scientific issues that will need to be addressed, both by health informatics researchers and the communities of self-trackers themselves
The future of laboratory medicine - A 2014 perspective.
Predicting the future is a difficult task. Not surprisingly, there are many examples and assumptions that have proved to be wrong. This review surveys the many predictions, beginning in 1887, about the future of laboratory medicine and its sub-specialties such as clinical chemistry and molecular pathology. It provides a commentary on the accuracy of the predictions and offers opinions on emerging technologies, economic factors and social developments that may play a role in shaping the future of laboratory medicine
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