Personalized Consent Flow in Contemporary Data Sharing for Medical Research: A Viewpoint
المؤلفون المشاركون
Rake, Ester A.
van Gelder, Marleen M. H. J.
Grim, David C.
Heeren, Barend
Engelen, Lucien J. L. P. G.
van de Belt, Tom H.
المصدر
العدد
المجلد 2017، العدد 2017 (31 ديسمبر/كانون الأول 2017)، ص ص. 1-4، 4ص.
الناشر
Hindawi Publishing Corporation
تاريخ النشر
2017-05-30
دولة النشر
مصر
عدد الصفحات
4
التخصصات الرئيسية
الملخص EN
Background.
Health data personally collected by individuals with wearable devices and smartphones is becoming an important data source for healthcare, but also for medical research.
Objective.
To describe a new consent model that allows people to control their personally collected health data and determine to what extent they want to share these for research purposes.
Methods.
We developed, in close collaboration with patients, researchers, healthcare professionals, privacy experts, and an accredited Medical Ethical Review Committee, an innovative concept called “personalized consent flow” within a research platform connected to a personal health record.
The development was an iterative process with informal meetings, semistructured interviews, and surveys.
The final concept of the personalized consent flow was reviewed by patients and improved and approved by the same patients in a focus group.
Results.
This concept could result in optimal control for individual users, since they will answer questions about how they will share data.
Furthermore, it enables users to collect data for specific studies and add expiration dates to their data.
This work facilitates further discussion about dynamic and personalized consent.
A pilot study with the personalized consent model is currently being carried out.
نمط استشهاد جمعية علماء النفس الأمريكية (APA)
Rake, Ester A.& van Gelder, Marleen M. H. J.& Grim, David C.& Heeren, Barend& Engelen, Lucien J. L. P. G.& van de Belt, Tom H.. 2017. Personalized Consent Flow in Contemporary Data Sharing for Medical Research: A Viewpoint. BioMed Research International،Vol. 2017, no. 2017, pp.1-4.
https://search.emarefa.net/detail/BIM-1138397
نمط استشهاد الجمعية الأمريكية للغات الحديثة (MLA)
Rake, Ester A.…[et al.]. Personalized Consent Flow in Contemporary Data Sharing for Medical Research: A Viewpoint. BioMed Research International No. 2017 (2017), pp.1-4.
https://search.emarefa.net/detail/BIM-1138397
نمط استشهاد الجمعية الطبية الأمريكية (AMA)
Rake, Ester A.& van Gelder, Marleen M. H. J.& Grim, David C.& Heeren, Barend& Engelen, Lucien J. L. P. G.& van de Belt, Tom H.. Personalized Consent Flow in Contemporary Data Sharing for Medical Research: A Viewpoint. BioMed Research International. 2017. Vol. 2017, no. 2017, pp.1-4.
https://search.emarefa.net/detail/BIM-1138397
نوع البيانات
مقالات
لغة النص
الإنجليزية
الملاحظات
Includes bibliographical references
رقم السجل
BIM-1138397
قاعدة معامل التأثير والاستشهادات المرجعية العربي "ارسيف Arcif"
أضخم قاعدة بيانات عربية للاستشهادات المرجعية للمجلات العلمية المحكمة الصادرة في العالم العربي
تقوم هذه الخدمة بالتحقق من التشابه أو الانتحال في الأبحاث والمقالات العلمية والأطروحات الجامعية والكتب والأبحاث باللغة العربية، وتحديد درجة التشابه أو أصالة الأعمال البحثية وحماية ملكيتها الفكرية. تعرف اكثر