Open Data, Grey Data, and Stewardship: Universities at the Privacy Frontier

As universities recognize the inherent value in the data they collect and hold, they encounter unforeseen challenges in stewarding those data in ways that balance accountability, transparency, and protection of privacy, academic freedom, and intellectual property. Two parallel developments in academic data collection are converging: (1) open access requirements, whereby researchers must provide access to their data as a condition of obtaining grant funding or publishing results in journals; and (2) the vast accumulation of 'grey data' about individuals in their daily activities of research, teaching, learning, services, and administration. The boundaries between research and grey data are blurring, making it more difficult to assess the risks and responsibilities associated with any data collection. Many sets of data, both research and grey, fall outside privacy regulations such as HIPAA, FERPA, and PII. Universities are exploiting these data for research, learning analytics, faculty evaluation, strategic decisions, and other sensitive matters. Commercial entities are besieging universities with requests for access to data or for partnerships to mine them. The privacy frontier facing research universities spans open access practices, uses and misuses of data, public records requests, cyber risk, and curating data for privacy protection. This paper explores the competing values inherent in data stewardship and makes recommendations for practice, drawing on the pioneering work of the University of California in privacy and information security, data governance, and cyber risk.Comment: Final published version, Sept 30, 201

The Changing Research Data Landscape and the Experiences of Ethics Review Board Chairs: Implications for Library Practice and Partnerships

Academic libraries have to a large extent taken the lead in facilitating new approaches to research data management, but changes to the research data landscape have had an impact on numerous areas of academic work, including ethics review. Using interpretive phenomenological analysis of interviews with chairs of Canadian research ethics boards, this study explores how ethics review boards have experienced changes to data policy and related technologies in order to describe the ethical implications of new approaches to data management and to explore ways in which the library, ethics review boards, and other campus partners might harmonize efforts to support emerging data practices. While ethics review boards in Canada are keenly aware of open data policies, data publishing in practice is still nascent. There is uncertainty about the adoption of changing technologies for research and their impacts on privacy protection. Where responsibility lies for addressing these uncertainties is often unclear. Academic libraries and research ethics boards are well-suited to engage in mutual knowledge transfer and to integrate data management planning and ethics review processes. Institutional-level oversight that includes all campus departments impacted by changes to the research data landscape may facilitate improved communication and reduce role ambiguity

Virtual Clinical Trials: One Step Forward, Two Steps Back

Virtual clinical trials have entered the medical research landscape. Today’s clinical trials recruit subjects online, obtain informed consent online, send treatments such as medications or devices to the subjects’ homes, and require subjects to record their responses online. Virtual clinical trials could be a way to democratize clinical research and circumvent geographical limitations by allowing access to clinical research for people who live far from traditional medical research centers. But virtual clinical trials also depart dramatically from traditional medical research studies in ways that can harm individuals and the public at large. This article addresses the issues presented by virtual clinical trials with regard to: (1) recruitment methods; (2) informed consent; (3) confidentiality; (4) potential risks to the subjects; and (5) the safety and efficacy of treatments that are approved

Developing a Framework for Creating mHealth Surveys

Various issues in the design of surveys for mobile health (mHealth) research projects yet exist. As mHealth solutions become more popular, new issues are brought into consideration. Researchers need to collect some critical information from participants in these mHealth studies. These mHealth studies require a specialized framework to create surveys, track progress and analyze user data. In these procedures, mHealth’s needs differ from other studies. Therefore, there has to be a new framework that satisfies needs of mHealth research studies. Although there are studies for creating efficient, robust and user-friendly surveys, there is no solution or study, which is specialized in mHealth area and solves specific problems of mHealth research studies. mHealth research studies sometimes require real-time access to user data. Reward systems may play a key role in their study. Most importantly, storing user information securely plays a key role in these studies. There is no such solution or study, which covers all these areas. In this thesis, we present guidelines for developing a framework for creating mHealth surveys. In doing this, we hope that we propose a solution for problems of creating and using of surveys in mHealth studies

\u3ci\u3eCaremark\u3c/i\u3e and ESG, Perfect Together: A Practical Approach to Implementing an Integrated, Efficient, and Effective \u3ci\u3eCaremark\u3c/i\u3e and EESG Strategy

With increased calls from investors, legislators, and academics for corporations to consider employee, environmental, social, and governance factors (“EESG”) when making decisions, boards and managers are struggling to situate EESG within their existing reporting and organizational structures. Building on an emerging literature connecting EESG with corporate compliance, this Essay argues that EESG is best understood as an extension of the board’s duty to implement and monitor a compliance program under Caremark. If a company decides to do more than the legal minimum, it will simultaneously satisfy legitimate demands for strong EESG programs and promote compliance with the law. Building on that insight, we explain how boards can marry existing corporate compliance programs with budding EESG programs. By integrating compliance and EESG, corporations can meet growing societal demands in an effective and efficient manner that capitalizes on existing structures. Lastly, we address how EESG and corporate compliance responsibilities should be allocated at the board and senior management level. Instead of separating compliance and EESG oversight, this Essay suggests that boards embrace a functional approach, delegating similar compliance and EESG oversight to the same committee and managers. By situating EESG within the board’s existing fiduciary duties, this Essay provides academics, legislators, investors, and managers with a novel framework to conceptualize EESG while also offering a path forward for boards struggling to place the current EESG movement within their existing corporate structure

An analysis of actual and desired roles of trustees and presidents of community colleges linked to board-president relationship and its impact on college effectiveness

This study\u27s primary purpose was to examine whether or not there were differences in the roles community college boards of trustees and presidents said they currently perform and those they said they should perform. In addition, the study sought to determine whether or not the relationship between trustees and the president impacted the effectiveness of community colleges in California, USA. The following research questions were used to guide the study. Was there a gap between what roles trustees of California Community Colleges said they perform and the roles they said they should perform? Was there a gap between what roles presidents of California Community Colleges said they perform and the roles they said they should perform? Did the perceived relationship between board of trustees and president impact the effectiveness of community colleges? Data collected did support the existence of a gap between what trustees and presidents said they did and what they said they should do and indeed there were statistically significant differences between do and should do average scores. Trustees underperformed in the areas of leadership regarding: creating a positive climate and providing effective leadership by modeling integrity, vision, and ethical behavior; establishing and enforcing policies that ensure the legal, ethical, and prudent management of college resources; and ensuring that administrative procedures exist and are followed to comply with laws and regulations. Presidents underperformed in the areas of leadership regarding: creating a positive climate and providing effective leadership by modeling integrity, vision, and ethical behavior; and ensuring that administrative procedures exist and are followed to comply with laws and regulations. Also the study found that from the perspective of trustees, there was a positive correlation between the impact of the perceived relationship between trustees and presidents and the effectiveness of community colleges as measured by enrollment, attrition, retention and goal attainment which is designated by graduation. However, from the perspective of presidents, there was a negative correlation between the impact of the perceived relationship between presidents and trustees of community colleges and the effectiveness of these colleges

Female Fortune 1000 board members: a phenomenological study

The latest studies show that 51% of all managerial positions are held by women, but less than 20% of women hold Fortune 1000 board positions nationwide in the United States. Only 2% of women hold CEO positions in Fortune 500 and Fortune 1000 companies. The purpose of this study was to understand what it is like to be a female Fortune 1000 board member in such a male-dominated arena. A 10-item questionnaire designed for this study was used to conduct the interviews. Common themes and key attributes were examined and described in detail. All 6 board members stated that their relationships, experience, and collaborative natures helped them to excel in their roles. A positive culture and a competent CEO were some organizational strengths that were discussed. Personal and professional challenges included lack of time, discrimination, and keeping up to date with their fields. Some recommendations for Fortune 1000 companies that the researcher would give would be to groom more women in lower roles for CFO, CEO, and board roles through succession planning and to encourage executive recruiters and board chairs to be open to more women on boards

\u3cem\u3eCaremark\u3c/em\u3e and ESG, Perfect Together: A Practical Approach to Implementing an Integrated, Efficient, and Effective \u3cem\u3eCaremark\u3c/em\u3e and EESG Strategy

With increased calls from investors, legislators, and academics for corporations to consider employee, environmental, social, and governance factors (“EESG”) when making decisions, boards and managers are struggling to situate EESG within their existing reporting and organizational structures. Building on an emerging literature connecting EESG with corporate compliance, this Essay argues that EESG is best understood as an extension of the board’s duty to implement and monitor a compliance program under Caremark. If a company decides to do more than the legal minimum, it will simultaneously satisfy legitimate demands for strong EESG programs and promote compliance with the law. Building on that insight, we explain how boards can marry existing corporate compliance programs with budding EESG programs. By integrating compliance and EESG, corporations can meet growing societal demands in an effective and efficient manner that capitalizes on existing structures. Lastly, we address how EESG and corporate compliance responsibilities should be allocated at the board and senior management level. Instead of separating compliance and EESG oversight, this Essay suggests that boards embrace a functional approach, delegating similar compliance and EESG oversight to the same committee and managers. By situating EESG within the board’s existing fiduciary duties, this Essay provides academics, legislators, investors, and managers with a novel framework to conceptualize EESG while also offering a path forward for boards struggling to place the current EESG movement within their existing corporate structure

A domain analysis model for eIRB systems: addressing the weak link in clinical research informatics

pre-printInstitutional Review Boards (IRBs) are a critical component of clinical research and can become a significant bottleneck due to the dramatic increase, in both volume and complexity of clinical research. Despite the interest in developing clinical research informatics (CRI) systems and supporting data standards to increase clinical research efficiency and interoperability, informatics research in the IRB domain has not attracted much attention in the scientific community. The lack of standardized and structured application forms across different IRBs causes inefficient and inconsistent proposal reviews and cumbersome workflows. These issues are even more prominent in multi-institutional clinical research that is rapidly becoming the norm. This paper proposes and evaluates a domain analysis model for electronic IRB (eIRB) systems, paving the way for streamlined clinical research workflow via integration with other CRI systems and improved IRB application throughput via computer-assisted decision support