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The power of using existing patient digital data to answer important health questions, including drug safety and effectiveness, cannot be underestimated. In order to get valid information, it is important to use the full population of data rather than self-selected individuals or populations. At the same time, it would be impossible to obtain informed consent from each individual to use their health data that’s already been collected for the purpose of conducting research. Therefore, we need to develop methods to optimize privacy protection (in other words, guarantee that no researcher would know a patient’s health status when using his or her data for research), and to inform and communicate with patients any potential risk of privacy violation.
Click on the video below to see the video from the webinar.
Dr. Hye-Chung Kum, was joined by CreakyJoints’ patients and staff for a one-hour webinar to discuss this important topic. Building transparency and trust in data-intensive biomedical research is important for the ArthritisPower and CreakyJoints patient community. Patient Health Data and Record Linkage helps us better understand the issues and methods used to preserve the privacy of patient data when linking records from various sources to use for health research.
The above are just a few takeaways from the one-hour event. Check out the embedded video, or head over to youtube.com/CreakyJoints to view the webinar in its entirety.
To learn more about the PCORnet Autoimmune and Systemic Inflammatory Syndromes Collaborative Research Group (ASIS CRG), click here.