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This talk will illustrate a new area of service support for academic research data services: privacy and disclosure protection for human subject data. The United States is just entering its second decade of data sharing requirements from funders and publishers. Academic institutions, however, are still adjusting to implications of sharing research data with open access, especially for human subject research. In 2011, Johns Hopkins University Libraries started one of the first research data management (RDM) services among U.S. universities, providing consulting and training and operating an institutional repository for research data, the JHU Data Archive. Early on, researchers expressed to us difficulty with securely managing PII/PHI and preparing de-identified datasets. Compliance offices, institutional ethics boards, and research administrators were neither prepared nor required to advise on techniques and review public access datasets for compliance with disclosure protection standards. Our public access data repository also required new procedures and expertise for screening human subject data for disclosure risk that often remained in submitted data. This talk reviews the history of development of these services in areas of training, consulting, and screening archived data for remaining risk. It then outlines the specific steps we currently use for screening data.&nbsp

Background: Breast cancer is the most common cancer for women, globally. Social, religious and healthcare contexts have been shown to influence women’s experiences of advanced breast cancer; however, research has tended to focus on resource-rich nations. There is limited research from low-resource contexts, and little is known on the experiences of Arab, Muslim and African women with advanced breast cancer. Aim: To explore and understand the experiences of advanced breast cancer in the Islamic Republic of Mauritania, West Africa. Methods: Using a constructivist Stakian multi-case study approach, eight cases were constructed around women (n=8) with advanced breast cancer, family members (n=10) and health professionals (n=9). Data were collected longitudinally (up to nine months per case) and consisted of interviews, audio-journals, a patient reported outcome measurement scale and a performance status scale. Withincase and cross-case analysis was undertaken, with thematic analysis of qualitative data. Findings: Three key themes were identified: 1. Destiny, 2. Patience & Acceptance and 3. Journeying in search of a cure. Mauritanian women appreciate that Allah is all powerful and maintains control over their destinies and their breast cancer. A fear of causing offence to Allah influences how they express negative experiences of breast cancer and its treatments. The women’s access to information and treatment is controlled by health professionals and families. Women are, therefore, required to use their own observations and interpretations to understand their breast cancer and empower their pursuit of treatment and a cure. Conclusion: Maure women’s experiences of advanced breast cancer in Mauritania are influenced by power imbalances. Allah is all-powerful. Families and health professionals exert power over Maure women’s access to information, healthcare decisions and how they express negative experiences. This thesis demonstrates that Maure women are cognisant of these challenges and, either, accept them as reality or attempt to work around them.

Panel presentation for the Research Data Access & Preservation (RDAP) Summit, 20 April 2017, in Seattle WA. Description: The sharing, reuse, redistribution and production of derivatives of research data often raise intellectual property questions. Some common questions that are often raised include 1) what are the legal rights in data (i.e., trade secrets, copyright, patents rights etc.); 2) who owns these rights (i.e., data ownership versus data stewardship); 3) what are best practices on maximizing data sharing and reuse while minimizing any risks of infringing legal rights in data (i.e., Creative Commons license, institutional data policies etc)? This panel will discuss intellectual property issues related to research data sharing and reuse, as well as share experience and lend expertise in working through these issues.Panel Lead: Renaine Julian, Florida State UniversityModerator: Marina (Qianjin) Zhang, University of IowaPanelists:Devin Soper, Scholarly Communications Librarian, Florida State UniversityMelanie Kowalski, Copyright and Scholarly Communications Librarian, Emory UniversityDavid Fearon, Data Management Consultant, JHU Data Management Services, Johns Hopkins University

As science becomes more dependent upon digital data, the need for data curation and for data digital libraries becomes more urgent. Questions remain about what researchers consider to be their data, their criteria for selecting and trusting data, and their orientation to data challenges. This paper reports findings from the first 18 months of research on astronomy data practices from the Data Conservancy. Initial findings suggest that issues for data production, use, preservation, and sharing revolve around factors that rarely are accommodated in use cases for digital library system design including trust in data, funding structures, communication channels, and perceptions of scientific value.

Data, statistical models and inferential procedures permeate CENS deployments, from the four founding scientific application areas to the more recent urban sensing campaigns. This cross-center research breaks down into three classes of research: 1) General statistical models for embedded sensing, with specific applications to data quality and continuous sampling, 2) Significant CENS-designed and supported databases and repositories, and 3) Studies into the data lifecycle for embedded sensing systems.

This report describes the results of a survey of social science jounals to document trends in the application of spatial approaches in different disciplines between 1990 and 2001. An appendix about the related CSISS web search engine and its controlled vocabulary is provided for those interested in the semantic and ontological foundations of this report regarding applications of geographical information science and spatial analysis in the social sciences.

With the publication of Über den Standort der Industrie (Theory of the Location of Industries) in 1909, Alfred Weber developed a general theory of industrial location. His model took into account spatial factors for finding the optimal location and minimal cost for manufacturing plants.

Between 1886 and 1903 Charles Booth produced a remarkable series of maps of London carefully coded for social class with data gathered by visiting, literally, every street in London.