Gordon McKay professor of Computer Science Krzystof Gajos received HDSI funding to create a new platform that helps foster trust with individuals with movement disorders by allowing them to view and explore their own data, helping them feel more informed and engaged in the research process.
Understanding how people move and behave can help scientists better identify and track neurological conditions like Parkinson’s disease and ataxia. This kind of research can lead to earlier diagnoses, more accurate ways to measure disease progression, and better treatments. To achieve this, researchers need large amounts of detailed information, which means they rely on many patients being willing to take part in studies. Interviews and past research show that participants are more likely to trust and join these studies when they feel like partners in the process. One key way to build that trust is by giving participants access to their own data. Many people want to see their results to better understand their condition, explain it to others, and connect with others who have similar experiences.
This project, and others like it, is made possible by the Trust in Science Fund.