Patients' consent preferences regarding the use of their health information for research purposes: a qualitative study.
Patients' consent preferences regarding the use of their health information for research purposes: a qualitative study.
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DOI：
10.1258/135581904322716076
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发表时间：
2004-01-01
影响因子：
2.4
通讯作者：
Keshavjee, Karim
中科院分区：
文献类型：
--
作者：
Nair, Kalpana;Willison, Donald;Keshavjee, Karim
目的：为了探讨患者的健康数据目前正在使用的研究purpose.METHODS：半结构化的采访进行了17例患者的主要医生参加了一项研究，利用去识别个人层面的健康信息，从他们的电子病历。所有医生都在安大略西南部执业。所有访谈都进行了录音，逐字记录，并使用不断比较的方法进行分析。所有的成绩单和汇报笔记进行阅读和重读，以引起一般themes.RESULTS：三个主要主题出现的数据：病人认识到需要平衡他们的同意偏好与时间压力，在临床遇到时，决定同意的性质，为一项研究，病人普遍认为寻求同意作为一个问题，尊重他们作为个人;患者也在权衡他们对这项研究的感受和担忧。对于这些患者来说，征求他们的同意是参与研究的重要一步。对于一些患者，赞助商和研究主题的因素，将影响他们的决定提供consent.CONCLUSION：患者希望他们的同意时，他们的数据被用于研究目的。这将涉及明确告知患者正在进行研究，提供书面同意书并定期更新研究。
OBJECTIVE: To explore the consent preferences of patients whose health data are currently being used for research purposes.METHODS: Semi-structured interviews were conducted with 17 patients whose primary physicians were taking part in a study that utilized de-identified individual-level health information from their electronic medical record. All physicians practised in southwestern Ontario. All interviews were taped, transcribed verbatim and analysed using a constant comparative method. All transcripts and debriefing notes were read and reread to elicit general themes.RESULTS: Three main themes emerged from the data: patients recognized the need to balance their consent preferences with time pressures in the clinical encounter when deciding the nature of consent for a study; patients generally regarded the seeking of consent as being an issue of respect for them as individuals; and patients were also weighing their perceived benefits and concerns related to the research. For these patients, seeking their consent was an important step in research participation. For some patients, the sponsor and the research topic were factors that would influence their decision to provide consent.CONCLUSION: Patients want their consent to be sought when their data are used for research purposes. This will involve explicitly informing patients that a study is taking place, providing written consent and offering regular updates about the study.