Patient Perspectives on Health Data Privacy and Management: "Where Is My Data and Whose Is It?"

IF 3.1 Q2 HEALTH CARE SCIENCES & SERVICES International Journal of Telemedicine and Applications Pub Date : 2018-12-02 eCollection Date: 2018-01-01 DOI:10.1155/2018/3838747
Mart Wetzels, Eva Broers, Peter Peters, Loe Feijs, Jos Widdershoven, Mirela Habibovic
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引用次数: 8

Abstract

New technologies are increasingly evaluated for use within the clinical practice to monitor patients' medical and lifestyle data. This development could contribute to a more personalized approach to patient care and potentially improve health outcomes. To date, patient perspective on this development has mostly been neglected in the literature. Hence, this study aims to shed more light on the patient perspective on health data privacy and management. Focus groups with cardiac patients were done at the Elizabeth TweeSteden Ziekenhuis (ETZ) in the Netherlands as part of the DoCHANGE project. The focus groups were conducted using a semistructured protocol which was organized around three themes: privacy regulations, data storage, and transparency and privacy management. Five focus groups with a total of 23 patients were conducted. The majority of the patients preferred to have access to their medical data; however, the knowledge on who has access to data was limited. Patients indicated that they do not want to share their medical data with health insurance companies or the pharmaceutical industry. Furthermore, most patients do not see the added value of supplementing their medical dossier with lifestyle data. Current findings showed patients prefer access to and control over own data but that the knowledge concerning data privacy and management is limited. Sharing of non-medical health data (e.g.,, physical activity) was considered unnecessary. Future studies should address patient preferences and develop infrastructure which facilitates medical data access for patients.

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患者对健康数据隐私和管理的看法:“我的数据在哪里,它是谁的?”
越来越多的新技术被评估用于临床实践中,以监测患者的医疗和生活方式数据。这一发展可能有助于更个性化的病人护理方法,并有可能改善健康结果。到目前为止,患者对这一发展的看法在文献中大多被忽视。因此,本研究旨在更多地阐明患者对健康数据隐私和管理的看法。作为DoCHANGE项目的一部分,在荷兰的Elizabeth TweeSteden Ziekenhuis (ETZ)对心脏病患者进行了焦点小组研究。焦点小组使用半结构化协议进行,该协议围绕三个主题组织:隐私法规,数据存储以及透明度和隐私管理。共进行了5个焦点组,共23例患者。大多数患者希望能够获得他们的医疗数据;但是,关于谁有权访问数据的知识有限。患者表示,他们不想与健康保险公司或制药行业分享他们的医疗数据。此外,大多数患者没有看到用生活方式数据补充他们的医疗档案的附加价值。目前的研究结果显示,患者更喜欢访问和控制自己的数据,但有关数据隐私和管理的知识有限。共享非医疗健康数据(例如,体育活动)被认为是不必要的。未来的研究应解决患者的偏好,并开发便于患者访问医疗数据的基础设施。
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来源期刊
CiteScore
6.90
自引率
2.30%
发文量
19
审稿时长
12 weeks
期刊介绍: The overall aim of the International Journal of Telemedicine and Applications is to bring together science and applications of medical practice and medical care at a distance as well as their supporting technologies such as, computing, communications, and networking technologies with emphasis on telemedicine techniques and telemedicine applications. It is directed at practicing engineers, academic researchers, as well as doctors, nurses, etc. Telemedicine is an information technology that enables doctors to perform medical consultations, diagnoses, and treatments, as well as medical education, away from patients. For example, doctors can remotely examine patients via remote viewing monitors and sound devices, and/or sampling physiological data using telecommunication. Telemedicine technology is applied to areas of emergency healthcare, videoconsulting, telecardiology, telepathology, teledermatology, teleophthalmology, teleoncology, telepsychiatry, teledentistry, etc. International Journal of Telemedicine and Applications will highlight the continued growth and new challenges in telemedicine, applications, and their supporting technologies, for both application development and basic research. Papers should emphasize original results or case studies relating to the theory and/or applications of telemedicine. Tutorial papers, especially those emphasizing multidisciplinary views of telemedicine, are also welcome. International Journal of Telemedicine and Applications employs a paperless, electronic submission and evaluation system to promote a rapid turnaround in the peer-review process.
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