The Role of Participants in a Medical Information Commons

被引：10

作者：

Majumder, Mary A. ^{[1
]}

Bollinger, Juli M. ^{[2
,3
]}

Villanueva, Angela G. ^{[2
]}

Deverka, Patricia A. ^{[4
]}

Koenig, Barbara A. ^{[5
,6
,7
]}

机构：

[1] Baylor Coll Med, Ctr Med Eth & Hlth Policy, Med, Houston, TX 77030 USA

[2] Baylor Coll Med, Ctr Med Eth & Hlth Policy, Houston, TX 77030 USA

[3] Johns Hopkins Univ, Berman Inst Bioeth, Baltimore, MD 21218 USA

[4] Geisinger Natl Precis Hlth, Value Evidence & Outcomes, Danville, PA USA

[5] Univ Calif San Francisco, Inst Hlth & Aging, Bioeth & Med Anthropol, San Francisco, CA 94143 USA

[6] UCSF Program Bioeth, San Francisco, CA USA

[7] Stanford Univ, Ctr Biomed Eth, Stanford, CA 94305 USA

来源：

JOURNAL OF LAW MEDICINE & ETHICS | 2019年 / 47卷 / 01期

基金：

美国国家卫生研究院;

关键词：

D O I：

10.1177/1073110519840484

中图分类号：

B82 [伦理学（道德学）];

学科分类号：

摘要：

Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a Medical Information Commons (MIC). We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participants. Although most interviewees supported engagement, they distinguished between individual versus collective forms. They also noted challenges including representation and perceived inefficiency, prompting reflection on political aspects of engagement and efficiency concerns.

引用

页码：51 / 61

页数：11