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Item Opportunities and Challenges in the Use of Personal Health Data for Health Research(Oxford University Press, 2015-09) Bietz, Matthew J; Bloss, Cinnamon S; Calvert, Scout; Godino, Job G; Gregory, Judith; Claffey, Michael P; Sheehan, Jerry; Patrick, KevinObjective: Understand barriers to the use of personal health data (PHD) in research from the perspective of three stakeholder groups: early adopter individuals who track data about their health, researchers who may use PHD as part of their research, and companies that market self-tracking devices, apps or services, and aggregate and manage the data that are generated. Materials and Methods: A targeted convenience sample of 465 individuals and 134 researchers completed an extensive online survey. Thirty-five hour-long semi-structured qualitative interviews were conducted with a subset of 11 individuals and 9 researchers, as well as 15 company/key informants. Results: Challenges to the use of PHD for research were identified in six areas: data ownership; data access for research; privacy; informed consent and ethics; research methods and data quality; and the unpredictable nature of the rapidly evolving ecosystem of devices, apps, and other services that leave “digital footprints.” Individuals reported willingness to anonymously share PHD if it would be used to advance research for the good of the public. Researchers were enthusiastic about using PHD for research, but noted barriers related to intellectual property, licensing, and the need for legal agreements with companies. Companies were interested in research but stressed that their first priority was maintaining customer relationships. Conclusion: Although challenges exist in leveraging PHD for research, there are many opportunities for stakeholder engagement, and experimentation with these data is already taking place. These early examples foreshadow a much larger set of activities with the potential to positively transform how health research is conducted.Item Data-Intensive Science and Campus IT(EDUCAUSE, 2015-09) Sheehan, Jerry; Arlitsch, Kenning; Mannheimer, Sara; Knobel, Cory; Llovet, PolMontana State University developed the Research Data Census to engage local research communities in dialogue about their data: size, sharing resources and behaviors, and interest in services. The census confirmed the need for a tight coupling of IT infrastructure to data and curation services in order to make those resources useful to the research community.Item Montana State University Research Data Census Instrument, Version 1(2015-01) Arlitsch, Kenning; Clark, Jason A.; Hager, Ben; Heetderks, Thomas; Llovet, Pol; Mannheimer, Sara; Mazurie, Aurélien J.; Sheehan, Jerry; Sterman, Leila B.Montana State University developed the Research Data Census (RDC) to engage our local research community in an interactive dialogue about their data. The research team was particularly interested in learning more about the following issues at Montana State: the size of research data; the role the local and wide area network play in accessing and sharing resources; data sharing behaviors; interest in existing services that assist with the curation, storage, and publication of scientific data discoveries.