9:45 - 9:55 amSaturday, September 17
Everyone Included™ Precision Medicine Tent
Barriers and Solutions in Sharing Results and Data with Research Participants | 9:45am to 10:45am
Everyone Included™ Precision Medicine Tent
Barriers and Solutions in Sharing Results and Data with Research Participants | 9:45am to 10:45am
While platforms such as GetMyHealthData.org and others are helping patients and providers understand how to ensure patient access to electronic health data, few patients are provided with access to results... Read more

Description

While platforms such as GetMyHealthData.org and others are helping patients and providers understand how to ensure patient access to electronic health data, few patients are provided with access to results and their health data when the participate in research studies or clinical trials.  Barriers perceived by researchers may include format for data return, ensuring budget for the cost of data return, and understanding timing of data return for research participants.  Concerns may also existing regarding scientific integrity of a study, such as maintaining study blinding or how to manage when data access changes patient behavior or outcomes.  Join a discussion to get past perceived issues and help get results and data into the hands of research participants.

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