Consumer Views on Privacy Protections and Sharing of Personal Digital Health Information.
Consumer Views on Privacy Protections and Sharing of Personal Digital Health Information.
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消费者对隐私保护和个人数字健康信息共享的看法。
DOI：
10.1001/jamanetworkopen.2023.1305
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发表时间：
2023-03-01
影响因子：
13.8
通讯作者：
Grande, David
中科院分区：
文献类型：
--
作者：
Gupta, Ravi;Iyengar, Raghuram;Sharma, Meghana;Cannuscio, Carolyn C.;Merchant, Raina M.;Asch, David A.;Mitra, Nandita;Grande, David
隐私保护，包括同意、与消费者收集的数据的透明度、对数据使用的监管监督以及删除数据的能力，是否与消费者分享其数字健康信息的意愿相关？在这项对3539名美国成年人的调查研究中，联合分析显示，隐私保护的组合，包括同意，消费者访问从他们那里收集的数据，道德和监管监督以及删除数据的能力，与更高的消费者愿意分享他们的数字健康数据有关。本研究的结果表明，加强同意作为主要隐私保护，并增加数据透明度、监管监督和删除数据能力等保护措施，可能会增加消费者的信任，从而支持对数字健康数据的社会有益使用。数字健康信息有许多潜在的健康应用，但隐私是消费者和政策制定者日益关注的问题。人们越来越多地认为，单凭同意不足以保护隐私。确定不同的隐私保护是否与消费者愿意分享其数字健康信息用于研究，营销或临床用途有关。这项2020年的全国调查与嵌入式联合实验从全国代表性样本中招募了美国成年人，对黑人和西班牙裔个体进行了过度抽样。在192个不同的场景中分享数字信息的意愿进行了评估，这些场景反映了4种可能的隐私保护，3种信息使用，2种信息用户和2种数字信息来源的产品。每个参与者被随机分配了9个场景。该调查于2020年7月10日至7月31日期间以西班牙语和英语进行。本研究的分析于二零二一年五月至二零二二年七月期间进行。参与者在5分制的李克特量表上对每个联合档案进行评分，以衡量他们分享个人数字信息的意愿（5分表示最愿意分享）。结果报告为校正的平均差异。在6284名潜在参与者中，3539人（56%）对联合情景做出了回应。共有1858名参与者（53%）为女性，758名（21%）为黑人，833名（24%）为西班牙裔，1149名（33%）年收入低于50 000美元，1274名（36%）为60岁或以上。参与者更愿意在每个人的隐私保护在场的情况下分享健康信息，包括同意（差异，0.32; 95% CI，0.29-0.35; P < .001），随后是数据删除（差异，0.16; 95% CI，0.13-0.18; P < .001），忽略（差异，0.13; 95%CI，0.10-0.15; P < .001），以及收集数据的透明度（差异，0.08; 95%CI，0.05-0.10; P < .001）。使用目的的相对重要性（0%-100%范围内的重要性权重）最大（29.9%），但当综合考虑时，4项隐私保护措施是联合实验中最重要的因素（51.5%）。当单独考虑4种隐私保护时，同意是最重要的（23.9%）。在这项对美国成年人的全国代表性样本的调查研究中，消费者出于健康目的分享个人数字健康信息的意愿与除了同意之外的特定隐私保护的存在有关。额外的保护措施，包括数据透明度、监督和数据删除，可以增强消费者分享个人数字健康信息的信心。这项调查研究使用了一个具有全国代表性的人群，以确定消费者对特定隐私保护的相对重要性的看法，包括同意、数据透明度、监管监督以及在各种数字健康数据使用中删除先前收集的个人数据的能力。
Are privacy protections, including consent, transparency of collected data with the consumer, regulatory oversight over data use, and ability to delete data, associated with consumers’ willingness to share their digital health information? In this survey study of 3539 US adults, conjoint analyses revealed that a combination of privacy protections including consent, consumer access to data collected from them, ethical and regulatory oversight, and ability to delete data together were associated with higher consumer willingness to share their digital health data. Results of this study suggest that strengthening consent as a primary privacy protection and adding protections including data transparency, regulatory oversight, and ability to delete data may increase consumer trust and thereby support socially beneficial uses of digital health data. Digital health information has many potential health applications, but privacy is a growing concern among consumers and policy makers. Consent alone is increasingly seen as inadequate to safeguard privacy. To determine whether different privacy protections are associated with consumers’ willingness to share their digital health information for research, marketing, or clinical uses. This 2020 national survey with an embedded conjoint experiment recruited US adults from a nationally representative sample with oversampling of Black and Hispanic individuals. Willingness to share digital information across 192 different scenarios reflecting the product of 4 possible privacy protections, 3 uses of information, 2 users of information, and 2 sources of digital information was evaluated. Each participant was randomly assigned 9 scenarios. The survey was administrated between July 10 and July 31, 2020, in Spanish and English. Analysis for this study was conducted between May 2021 and July 2022. Participants rated each conjoint profile on a 5-point Likert scale measuring their willingness to share their personal digital information (with 5 indicating the most willingness to share). Results are reported as adjusted mean differences. Of the 6284 potential participants, 3539 (56%) responded to the conjoint scenarios. A total of 1858 participants (53%) were female, 758 (21%) identified as Black, 833 (24%) identified as Hispanic, 1149 (33%) had an annual income less than $50 000, and 1274 (36%) were 60 years or older. Participants were more willing to share health information with the presence of each individual privacy protection, including consent (difference, 0.32; 95% CI, 0.29-0.35; P < .001), followed by data deletion (difference, 0.16; 95% CI, 0.13-0.18; P < .001), oversight (difference, 0.13; 95% CI, 0.10-0.15; P < .001), and transparency of data collected (difference, 0.08; 95% CI, 0.05-0.10; P < .001). The relative importance (importance weight on a 0%-100% scale) was greatest for the purpose of use (29.9%) but when considered collectively, the 4 privacy protections together were the most important (51.5%) factor in the conjoint experiment. When the 4 privacy protections were considered separately, consent was the most important (23.9%). In this survey study of a nationally representative sample of US adults, consumers’ willingness to share personal digital health information for health purposes was associated with the presence of specific privacy protections beyond consent alone. Additional protections, including data transparency, oversight, and data deletion may strengthen consumer confidence in sharing their personal digital health information. This survey study uses a nationally representative population to determine consumers’ perception of the relative importance of specific privacy protections, including consent, data transparency, regulatory oversight, and ability to delete previously collected personal data in various uses of digital health data.
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影响因子：
39
作者：
Grande, David;Mitra, Nandita;Shah, Anand;Wan, Fei;Asch, David A.
通讯作者：
Asch, David A.
影响因子：
7.4
作者：
Grande D;Luna Marti X;Merchant RM;Asch DA;Dolan A;Sharma M;Cannuscio CC
通讯作者：
Cannuscio CC
影响因子：
--
作者：
Corbie-Smith, G;Thomas, SB;St George, DMM
通讯作者：
St George, DMM
影响因子：
7.5
作者：
Ben Miled, Zina;Haas, Kyle;Boustani, Malaz A.
通讯作者：
Boustani, Malaz A.
影响因子：
39.2
作者：
Grande D;Mitra N;Shah A;Wan F;Asch DA
通讯作者：
Asch DA