Sharing Linked Data for Health Research - Adams, Carolyn; Allen, Judy; Flack, Felicity
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"The genesis of this project was the experience of the authors working with researchers, data custodians, ethics committees, and linkage units over the past decade or more managing access to government administrative data for research. Our individual backgrounds, experience, and expertise meant that we brought a diverse, interdisciplinary approach to the table. We started to identify the problems: we heard from researchers that there were concerns with unjustified delay and lack of access to data for research that was in the public interest; we heard from data custodians that they found the…mehr

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Produktbeschreibung
"The genesis of this project was the experience of the authors working with researchers, data custodians, ethics committees, and linkage units over the past decade or more managing access to government administrative data for research. Our individual backgrounds, experience, and expertise meant that we brought a diverse, interdisciplinary approach to the table. We started to identify the problems: we heard from researchers that there were concerns with unjustified delay and lack of access to data for research that was in the public interest; we heard from data custodians that they found the decision-making process difficult because they did not have sufficient resources or guidance; we heard from ethics committees that they found data linkage projects complex and difficult to assess; and we heard from consumer representatives that there were concerns about privacy, transparency, community awareness, and consultation"--
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Autorenporträt
Carolyn Adams, originally from Houston, Texas, has lived in Beaverton, Oregon, since 2017. From childhood, her passion has been reading and writing poetry, and as an adult, she has cultivated a love of photography and art. While living in Houston, she was active in the art and literary communities of Houston, Austin, and other parts of Texas for many years, coordinating and performing in numerous readings, festivals, literary events, and art exhibitions. In 2013, she was a finalist for Houston Poet Laureate. She received her undergraduate degree in Humanities from the University of Houston in 2016. She has been nominated for a Pushcart prize and for Best of the Net. Since her move to Oregon, she has connected with poets in her new home and continues her involvement in the local scene, as well as taking frequent trips into the beautiful natural environment of her new home state. Her poetry, art, and photography have appeared in Caveat Lector, Steam Ticket, Bryant Literary Review, The Weight of Addition: An Anthology of Texas Poetry, Common Ground Review, Beatnik Cowboy, Kansas City Voices, San Pedro River Review, and Cimarron Review, among others. She has assisted in editing and publishing the literary journals Curbside Review, Ardent, Lily Literary Review, Mad Hatters Review, Mojave River Review and VoiceCatcher. Her poetry e-chapbook Beautiful Strangers was published in 2006 by Lily Press, and her art e-chapbook, What Do you See?, published in 2007, is available free of charge from the e-zine Right Hand Pointing. She has also published two chapbooks, An Ocean of Names in 2011, and The Things You've Left Behind in 2016.