Biomedical research is being transformed through the application of information technologies that allow ever greater amounts of data to be shared on an unprecedented scale. However, the methods for involving participants have not kept pace with changes in research capability. In an era when information is shared digitally at the global level, mechanisms of informed consent remain static, paper-based and organised around national boundaries and legal frameworks. Dynamic consent (DC) is both a specific project and a wider concept that offers a new approach to consent; one designed to meet the needs of the twenty-first century research landscape. At the heart of DC is a personalised, digital communication interface that connects researchers and participants, placing participants at the heart of decision making. The interface facilitates two-way communication to stimulate a more engaged, informed and scientifically literate participant population where individuals can tailor and manage their own consent preferences. The technical architecture of DC includes components that can securely encrypt sensitive data and allow participant consent preferences to travel with their data and samples when they are shared with third parties. In addition to improving transparency and public trust, this system benefits researchers by streamlining recruitment and enabling more efficient participant recontact. DC has mainly been developed in biobanking contexts, but it also has potential application in other domains for a variety of purposes.
Cloud computing has become central to current discussions about corporate Information technology. To assess the impact that cloud may have on enterprises, it is important to evaluate the claims made in the existing literature and critically review these claims against empirical evidence from the field. To this end, this paper provides a framework within which to locate existing and future research on cloud computing. This framework is structured around a series of technological and service ‘desires’, that is, characteristics of cloud that are important for cloud users. The existing literature on cloud computing is located within this framework and is supplemented with empirical evidence from interviews with cloud providers and cloud users that were undertaken between 2010 and 2012. The paper identifies a range of research questions that arise from the analysis.
BackgroundElectronic health records are widely acknowledged to provide an important opportunity to anonymize patient-level health care data and collate across populations to support research. Nonetheless, in the wake of public and policy concerns about security and inappropriate use of data, conventional approaches toward data governance may no longer be sufficient to respect and protect individual privacy. One proposed solution to improve transparency and public trust is known as Dynamic Consent, which uses information technology to facilitate a more explicit and accessible opportunity to opt out. In this case, patients can tailor preferences about whom they share their data with and can change their preferences reliably at any time. Furthermore, electronic systems provide opportunities for informing patients about data recipients and the results of research to which their data have contributed.ObjectiveTo explore patient perspectives on the use of anonymized health care data for research purposes. To evaluate patient perceptions of a Dynamic Consent model and electronic system to enable and implement ongoing communication and collaboration between patients and researchers.MethodsA total of 26 qualitative interviews and three focus groups were conducted that included a video presentation explaining the reuse of anonymized electronic patient records for research. Slides and tablet devices were used to introduce the Dynamic Consent system for discussion. A total of 35 patients with chronic rheumatic disease with varying levels of illness and social deprivation were recruited from a rheumatology outpatient clinic; 5 participants were recruited from a patient and public involvement health research network.ResultsPatients were supportive of sharing their anonymized electronic patient record for research, but noted a lack of transparency and awareness around the use of data, making it difficult to secure public trust. While there were general concerns about detrimental consequences of data falling into the wrong hands, such as insurance companies, 39 out of 40 (98%) participants generally considered that the altruistic benefits of sharing health care data outweighed the risks. Views were mostly positive about the use of an electronic interface to enable greater control over consent choices, although some patients were happy to share their data without further engagement. Participants were particularly enthusiastic about the system as a means of enabling feedback regarding data recipients and associated research results, noting that this would improve trust and public engagement in research. This underlines the importance of patient and public involvement and engagement throughout the research process, including the reuse of anonymized health care data for research. More than half of patients found the touch screen interface easy to use, although a significant minority, especially those with limited access to technology, expressed some trepidation and felt they may need support to use the system.ConclusionsPatients fro...
Abstract:Interorganizational systems operate in an area where there are many interested parties. If the views of these interested parties are not explored and taken into consideration before and during the development of an interorganizational system, it is likely that the implementation of this system will be disappointing. This paper describes one approach to exploring these views through the use of stakeholder analysis. More specifically, it describes how to identify the stakeholders, a process that has been overlooked in the stakeholder analysis and interorganizational systems literature, and examines the perceptions of a number of stakeholders in the drug use management field in the United Kingdom.
The use of digital technologies is now widespread and increasing, but is not always optimized for effective learning. Teachers in higher education have little time or support to work on innovation and improvement of their teaching, which often means they simply replicate their current practice in a digital medium. This paper makes the case for a learning design support environment to support and scaffold teachers' engagement with and development of technology‐enhanced learning, based on user requirements and on pedagogic theory. To be able to adopt, adapt, and experiment with learning designs, teachers need a theory‐informed way of representing the critical characteristics of good pedagogy as they discover how to optimize learning technologies. This paper explains the design approach of the Learning Design Support Environment project, and how it aims to support teachers in achieving this goal.
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