Health research governance of data access: a black-box challenge.

Paula McDonald, Robyn Mayes, Peter Frederiksen, Christina Malatzky, Alicia Feldman, Janet M Davies, Diana Leon-Espinoza
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Abstract

This article addresses organisational governance, including perceived reputational concerns, by health data custodians as the principal barrier to timely and transparent research. Although existing literature primarily addresses ethics reviews and site-specific research approvals, our experience with a Local Hospital Network uncovered additional active barriers within this complex health system. We position these experiences in relation to literature that has documented inefficiencies in health research governance processes that lead to lost knowledge capital and opportunities for significant advancements in health systems research.

卫生研究数据访问的治理:一个黑箱挑战。
本文将健康数据保管人的组织治理(包括感知到的声誉问题)视为及时和透明研究的主要障碍。虽然现有文献主要涉及伦理审查和特定地点的研究批准,但我们在当地医院网络的经验发现,在这个复杂的卫生系统中存在额外的主动障碍。我们将这些经验与文献联系起来,这些文献记录了卫生研究治理过程效率低下,导致知识资本和卫生系统研究取得重大进展的机会丧失。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
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