Sharing Linked Data for Health Research - Carolyn Adams - Bog

"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"--