Wisconsin School for Girls Inmate Record Books: A Case Study of Redacted Digitization

The Wisconsin School for Girls collection housed in the Wisconsin Historical Society (WHS) archives contains a variety of documents from the institution’s period of operation. Inmates who were admitted to the institution were predominately juvenile females at the time of the records’ creation; because of this, the contents of the records are protected by Wisconsin state statutes, which mandate restricted access for patrons as well as limitations on the use of the information contained within the records. This article examines how the restrictions on the collection continue to protect the privacy of the inmates and their descendants, what procedures WHS has in place to ensure continued trust in their custodianship, why a repository like WHS would value a collection with access restrictions, and who the primary patron group of this collection might be. Finally, this article argues that redacted digital representations of a limited number of the institution’s records (with an option for patrons to assume the cost of redaction and digitization of further records) and the use of an online user agreement form to access the collection are a viable means for WHS to digitize this collection and open it to researchers while still preserving public trust in its custodianship

Legal and Policy Framework for Promoting Equitable Access to Documentary Heritage

The National Mission for Manuscripts of India, in association with UNESCO, completed a research study to assist in the development of legal and policy framework and protocols for promoting equitable access to documentary heritage, relevant to India and other South Asian countries. This study report seeks to accurately identify and critically examine the legal and policy framework for promoting equitable access to our documentary heritage. The National Mission for Manuscripts is the most important institution in India creating bibliographic databases of manuscripts and engaged in the conservation and preservation of valuable manuscripts. This report engages with the legal and policy framework which envelops the lifecycle of the Mission’s work: the process of access to manuscripts, digitization of manuscripts and the creation of databases. By critically examining the legal rules in the practical context of the Mission’s work, the research team has put together the first such review of any such initiative in the protection of traditional knowledge in the country. The conclusions of the report are in the form of draft legal agreements and policy recommendations located in the discussion on various parts of the Mission’s work. While this report does not set out to be the final word on these significant policy initiatives, the report definitely makes significant progress in the policy debate and legal literature in this field. This report illustrates working patterns of the Mission within the legal and policy framework in the Country. This report will be a valuable sourcebook for understanding South Asian legal and policy framework for accessing documentary heritage collections. The draft legal agreements and policy recommendations, presented in this report, will also be valuable intervention tools for South Asian countries that share similar legal and policy framework within the sub-region

The Digitization of Healthcare: Understanding Personal Health Information Disclosure by Consumers in Developing Countries - An Extended Privacy Calculus Perspective

Conducting Design Science Research (DSR) has many risks. Extant literature, such as the Risk Management Framework for Design Science Research (RMF4DSR), provides advice for identifying risks, but provides few suggestions for specific treatments for the kinds of risks that potentially plague DSR. This paper analyses known DSR risks from RMF4DSR, augments them with other risks identified, and develops a purposeful artefact (TRiDS: Treatments for Risks in Design Science), which provides 46 specific suggestions for treating known risks in DSR. The treatments identified are classified into 13 different categories and reference is made to relevant literature for guiding the application of each treatment. The treatment suggestions and guidance serve as a supplement to existing frameworks and methods for risk identification and management in DSR

Drivers of Personal Health Information Privacy Concerns among Individuals in Developing Countries: A Conceptual Model

In recent years, there has been increased use of electronic healthcare (e-health) in developing countries. E-health can contribute immensely to addressing the myriad of health challenges facing these countries (e.g., extending geographic access to care, improving management of health information). The emergence of e-health, however, has raised individuals’ concerns about personal health information (PHI) privacy, being often identified as a key barrier to the successful implementation of e-health. To ensure the sustained growth and development of e-health in developing countries it is important to understand and respond appropriately to individuals’ concerns regarding the electronic storage, use and communication of PHI as well as the factors driving these concerns. This paper reports on a study which seeks to address the above research problem by developing and examining a model of key determinants of individual PHI privacy concerns in developing countries. More specifically, the study examines a model of the impacts of individual characteristics such as gender, individual experiences such as computer experience, and individual beliefs such as trust in e-health systems and trust in health services providers, on PHI privacy concerns. A survey study which tests the proposed model in the healthcare setting of Ghana, a Sub-Saharan African nation, is outlined. Implications for research and practice are also discussed

Privacy and Confidentiality Issues in Historical Health Sciences Collections

Historical health sciences collections are rare and unique materials containing large amounts of information subject to confidentiality and privacy laws and concerns. Formerly, the custodians of these collections handled these issues in relative obscurity, but technological changes and changing laws and norms around health care privacy have made these issues more acute and public. The intent of this Article is to describe the nature of these collections and the qualifications of the people who administer them, and to analyze some of the privacy and confidentiality issues that arise in the course of that work. The aim is to acquaint privacy officers, in-house legal counsel, and other members of the legal profession with the privacy and confidentiality challenges that these collections present, with the needs of researchers who use these collections, and with the reasons why historical health sciences collections are important.Publisher allows immediate open acces

Citizens\u27 Health Information Privacy Concerns: A Multifaceted Approach

The increasing prevalence of ICTs in healthcare is transforming the health services received by patients. This transformation is in part facilitated by healthcare providers’ utilization of eHealth technologies, which provide physicians with access to the health data required to treat patients. The recent emergence of mobile health (mHealth) technologies such as mHealth applications and personal health records (PHRs) enable citizens to play a role in this transformation by presenting them with the opportunity to manage their own health. The success of both eHealth and mHealth technologies is contingent on acceptance and adoption by both physicians and citizens. However in order to ensure success, the factors driving or inhibiting acceptance and adoption of these technologies must be understood. In the existing literature, factors driving citizen acceptance of health ICTs are under-examined. This paper focuses on citizens’ health information privacy concerns (HIPC), which are regularly cited as a barrier to health ICT implementation. The paper presents a framework to investigate the influence of citizens’ HIPC on their acceptance and adoption of health ICTs. An upcoming study which tests this framework and the hypotheses presented in the paper is also outlined

The Health Care Industry is Ready for a Revolution: Its Privacy Laws are Not

This paper highlights the costs and benefits associated with the gathering, storing, analyzing, and digitizing of health information; examines current privacy laws and their inadequacies in the new and constantly changing digital health world; and then provides a proposal framework to balance encouraging innovation while protecting individual autonomy. The article specifically proceeds as follows. This paper first discusses of the evolution of the health industry, from paper records to the wide array of sources generating health information today. Next, it considers the benefits to the ever-increasing amount of health information, which, while considerable can often be in tension with privacy and autonomy interests. It then examines the current privacy models applicable to the various sources of health information, and highlight the types of information left unprotected, as well as the ways in which individuals lack control over their health information. Finally, this paper introduces a framework that is flexible enough to adapt to different societal interests but maintains the integrity of the health system by ensuring that the individual’s interests remain the priority. Such a framework will allow individuals to be in control of their health information in a way that protects their individual interests and allows them to contribute to societal growth

Do Individuals in Developing Countries Care about Personal Health Information Privacy? An Empirical Investigation

As developing countries migrate to electronic healthcare (e-health) systems, emerging case studies suggest concerns are being raised about the privacy and security of personal health information (PHI) (e.g., Bedeley & Palvia, 2014; Willyard, 2010). However, there is lack of consideration of PHI privacy in the development of e-health systems in these countries as developers and policy makers assume that individuals are in greater need of healthcare and may not care about issues such as privacy (Policy Engagement Network [PEN], 2010). To better understand these assumptions and concerns individuals may have about the digitization of their PHI, this study examined individuals’ privacy concerns regarding the use of electronic health record (EHR) systems by hospitals for storing and managing PHI. A survey was conducted on a sample of 276 individuals in Ghana, a Sub-Saharan African country. We analysed the dataset using t-test and analysis of variance (ANOVA). Contradicting the assumption underlying e-health systems development, the results demonstrated that whilst individuals are less concerned about the collection of their PHI by hospitals, they are highly concerned about unauthorised secondary use, errors, and unauthorize access regarding their PHI stored in EHR systems. These concerns are especially greater for individuals with high computer experience and those who are extremely concerned about their health. Furthermore, compared with women and older individuals (35 years or older), men and younger individuals (aged 18-24) are more concerned about the collection of their PHI by hospitals. Implications for research and practice are discussed