When Patients Know Things the Doctor Does Not

The knowledgeable patient can still be seen as a threat, even by a medical resident. While every institution talks about how they much they care about their patients, they still tell patients that they don't need to see the data collected on them because they're not equipped to use their own data. And researchers might not pass useful information from trials on to the very patients who provided the input to those trials. In this video, People with Empathy founder Christine Von Raesfeld discusses these issues and offers ideas for useful applications of data. For 47 years, von Raesfeld has struggled with a rare disease whose origin is still unknown. A big proponent of collecting and using data in health care, she is one of the first patients to attend the Health Datapalooza conferences. Data of value to rare disease patients is often scattered among different clinical studies. Von Raesfeld wants to train patients and their caretakers along with clinicians to combine those insights with data derived from patient devices and everyday activities. This requires more openness an sharing, as well as education on all sides.