Presented by Hye-Chung Kum, PhD, associate professor of health policy and management at Texas A&M University

The power of using patients’ 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. But at the same time, it would be impossible to obtain informed consent from each individual to use 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.

In this webinar, Dr. Hye-Chung Kum discusses such issues as building transparency and trust in data-intensive biomedical research, which is important for the ArthritisPower and CreakyJoints patient community. This webinar can help 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.

Fast Facts from the Webinar

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. We can’t 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, health care data libraries can take a similar approach to ensure effective safeguards are in place.

4. Risks come with benefits

There will always be a risk of data leaks. Just as you can’t 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. Software has been developed that minimizes patient privacy violations while still enabling health data to be linked and used as a revolutionary research tool.

Get Involved in Arthritis Research

If you are diagnosed with arthritis or another musculoskeletal condition, we encourage you to participate in future studies by joining CreakyJoints’ patient research registry, ArthritisPower. ArthritisPower is the first-ever patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. Learn more and sign up here.

This webinar was produced with the Autoimmune and Systemic Inflammatory Syndromes Collaborative Research Group (ASIS CRG). As part of the National Patient-Centered Clinical Research Network, this research group collaborates with stakeholders including patients, caregivers, advocacy groups, providers, and funders early on to move research forward more quickly and more efficiently. Learn more about our work here.

CreakyJoints website material and content are intended for evidence based informational and educational purposes only. Any material or content on our website is not intended to substitute for medical advice, diagnosis or treatment from a physician or qualified health provider.
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