Effect of Public Deliberation on Patient Attitudes Regarding Consent and Data Use in a Learning Health Care System for Oncology.
Effect of Public Deliberation on Patient Attitudes Regarding Consent and Data Use in a Learning Health Care System for Oncology.
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DOI：
10.1200/jco.19.01693
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发表时间：
2019-12-01
期刊：
影响因子：
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通讯作者：
Bradbury, Angela R
中科院分区：
文献类型：
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作者：
Jagsi, Reshma;Griffith, Kent A;Bradbury, Angela R
目得：我们试图产生知情和考虑的意见，可接受的二次使用的去识别的健康信息和同意模型的肿瘤学学习health care systems.METHODS：为期一天的民主审议会议包括217例癌症患者在四个地理和社会人口统计学上不同的网站。患者完成了三项调查（在基线，审议后立即，1个月的随访）。结果：参与者是67.3%的女性，21.7%的黑人，6.0%的西班牙裔。经过审议后，人们的看法发生了最显著的变化，这与保险公司使用去身份化的医疗记录数据有关。经过讨论，72.3%的参与者认为，如果目的是确保患者接受推荐的护理（基线时为79.5%; P = 0.03）; 24.9%的参与者认为，如果目的是确定是否有资格获得保险或报销（基线时为50.9%; P <0.001）。关于二次研究使用的最显着变化与相信医生至少询问患者一次研究人员是否可以将去识别的医疗记录数据用于未来的研究有关。支持高度重要性的比例从基线（82.2%）下降到讨论后立即的68.7%（P < .001），并在随访时保持下降趋势，为73.1%（P = .01）。在随访中，非西班牙裔白人更有可能认为能够使用去识别的电子健康记录进行医学研究非常重要（96.8% vs87.7%; P = .01），并且不太可能认为医生每次使用去识别的医疗记录信息进行研究时获得患者的许可非常重要结论：本研究证实，大多数患者希望在使用去身份化病历进行研究之前进行询问。旨在实现学习医疗保健系统的潜在好处的政策可以，也应该是基于知情和深思熟虑的公众舆论。
PURPOSE: We sought to generate informed and considered opinions regarding acceptable secondary uses of deidentified health information and consent models for oncology learning health care systems.METHODS: Day-long democratic deliberation sessions included 217 patients with cancer at four geographically and sociodemographically diverse sites. Patients completed three surveys (at baseline, immediately after deliberation, and 1-month follow-up).RESULTS: Participants were 67.3% female, 21.7% black, and 6.0% Hispanic. The most notable changes in perceptions after deliberation related to use of deidentified medical-record data by insurance companies. After discussion, 72.3% of participants felt comfortable if the purpose was to make sure patients receive recommended care (v 79.5% at baseline; P = .03); 24.9% felt comfortable if the purpose was to determine eligibility for coverage or reimbursement (v 50.9% at baseline; P < .001). The most notable change about secondary research use related to believing it was important that doctors ask patients at least once whether researchers can use deidentified medical-records data for future research. The proportion endorsing high importance decreased from baseline (82.2%) to 68.7% immediately after discussion (P < .001), and remained decreased at 73.1% (P = .01) at follow-up. At follow-up, non-Hispanic whites were more likely to consider it highly important to be able to conduct medical research with deidentified electronic health records (96.8% v 87.7%; P = .01) and less likely to consider it highly important for doctors to get a patient's permission each time deidentified medical record information is used for research (23.2% v 51.6%; P < .001).CONCLUSION: This research confirms that most patients wish to be asked before deidentified medical records are used for research. Policies designed to realize the potential benefits of learning health care systems can, and should be, grounded in informed and considered public opinion.