Patient Health Data and Record Linkage

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.


Hye-Chung Kum, PhD, Associate Professor at Texas A&M University

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.

Here are a few of our key learnings:

    1. Patient privacy and access to data for research MUST be balanced. Researchers do not need to look at every detail or all the data that patients provide. It is possible to look at minimum information in order to make appropriate data linkages.
    2. One cannot assume unlimited privacy in the real world. Just as the financial sector has succeeded in providing protection through the use of secure computer software, the building of a safe environment, and increased governance and monitoring of how data are collected and used, healthcare data libraries can take a similar approach to ensure effective safeguards are in place.
    3. Risk accompanies benefit. There will always be a risk of data leaks. Just as one cannot drive on a highway assuming that a car accident will never occur, so it is with data. We minimize the risk of injury from car accidents by driving carefully and protecting ourselves with seat belts. Similarly, we protect the privacy of health data by using specific software and protocols.
    4. Software has been developed that minimizes patient privacy violations while still enabling health data to be linked and used as a revolutionary research tool.

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.


Autoimmune and Systemic Inflammatory Syndromes Collaborative Research Group (ASIS CRG)

To learn more about the PCORnet Autoimmune and Systemic Inflammatory Syndromes Collaborative Research Group (ASIS CRG), click here.