Fresh takes on five health data sharing domains: Quality, privacy, equity, incentives, and sustainability.
Fresh takes on five health data sharing domains: Quality, privacy, equity, incentives, and sustainability.
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DOI：
10.3389/fdata.2023.1095119
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发表时间：
2023
影响因子：
3.1
通讯作者：
McGuire, Amy L. L.
中科院分区：
文献类型：
--
作者：
Guerrini, Christi J. J.;Majumder, Mary A. A.;Robinson, Jill O. O.;Cook-Deegan, Robert;Blank, Matthew;Bollinger, Juli;Geary, Janis;Gutierrez, Amanda M. M.;Shrikant, Maya;McGuire, Amy L. L.
随着世界各地的实体投资于存储库和其他基础设施以促进卫生数据共享，需要可扩展的解决方案来应对数据共享挑战。我们对24名专家进行了半结构化访谈，以探讨对与卫生数据共享有关的潜在问题和政策选择的看法。在这个视角中，我们描述了受访者分享的与五个领域相关的非常规见解，这些领域包括：数据质量、隐私、公平、激励和可持续性。这些见解质疑了对把关的粒度质量指标的关注；挑战对最大化风险披露实践的热情；提醒注意可能损害患者声音的权力动态；鼓励对新一代科学家分享倾向的信心；并赞同在选择长期伴侣时考虑个人性格。我们考虑每个见解的优点，并以鼓励创造性思维来解决数据共享挑战的广泛目标。
As entities around the world invest in repositories and other infrastructure to facilitate health data sharing, scalable solutions to data sharing challenges are needed. We conducted semi-structured interviews with 24 experts to explore views on potential issues and policy options related to health data sharing. In this Perspective, we describe and contextualize unconventional insights shared by our interviewees relevant to issues in five domains: data quality, privacy, equity, incentives, and sustainability. These insights question a focus on granular quality metrics for gatekeeping; challenge enthusiasm for maximalist risk disclosure practices; call attention to power dynamics that potentially compromise the patient's voice; encourage faith in the sharing proclivities of new generations of scientists; and endorse accounting for personal disposition in the selection of long-term partners. We consider the merits of each insight with the broad goal of encouraging creative thinking to address data sharing challenges.
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影响因子：
4.5
作者：
Kaye J;Terry SF;Juengst E;Coy S;Harris JR;Chalmers D;Dove ES;Budin-Ljøsne I;Adebamowo C;Ogbe E;Bezuidenhout L;Morrison M;Minion JT;Murtagh MJ;Minari J;Teare H;Isasi R;Kato K;Rial-Sebbag E;Marshall P;Koenig B;Cambon-Thomsen A
通讯作者：
Cambon-Thomsen A
DOI：
10.1146/annurev-economics-080213-041341
发表时间：
2014-01-01
期刊：
ANNUAL REVIEW OF ECONOMICS, VOL 6
影响因子：
--
作者：
Loewenstein, George;Sunstein, Cass R.;Golman, Russell
通讯作者：
Golman, Russell
影响因子：
12.3
作者：
Milne R;Morley KI;Almarri MA;Anwer S;Atutornu J;Baranova EE;Bevan P;Cerezo M;Cong Y;Costa A;Critchley C;Fernow J;Goodhand P;Hasan Q;Hibino A;Houeland G;Howard HC;Hussain SZ;Malmgren CI;Izhevskaya VL;Jędrzejak A;Jinhong C;Kimura M;Kleiderman E;Leach B;Liu K;Mascalzoni D;Mendes Á;Minari J;Nicol D;Niemiec E;Patch C;Pollard J;Prainsack B;Rivière M;Robarts L;Roberts J;Romano V;Sheerah HA;Smith J;Soulier A;Steed C;Stefànsdóttir V;Tandre C;Thorogood A;Voigt TH;Wang N;West AV;Yoshizawa G;Middleton A
通讯作者：
Middleton A
影响因子：
2.1
作者：
McGuire, Amy L.;Majumder, Mary A.;Cook-Deegan, Robert
通讯作者：
Cook-Deegan, Robert
影响因子：
3.7
作者：
Tenopir C;Allard S;Douglass K;Aydinoglu AU;Wu L;Read E;Manoff M;Frame M
通讯作者：
Frame M