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.

These problems, along with suggestions for positive uses of data, are described in this video with Christine Von Raesfeld, founder of People with Empathy. Von Raesfeld herself has been dealing for 47 years with a rare disease whose cause has not yet been determined. 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.

Watch the video for Von Raesfeld’s views on holistic care, why interpretive results are not always enough, what Medicare can do to help patients use data, and an ER story fraught with tension.

Learn more about People with Empathy: https://www.peoplewithempathy.org/

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About the author

Andy Oram

Andy is a writer and editor in the computer field. His editorial projects have ranged from a legal guide covering intellectual property to a graphic novel about teenage hackers. A correspondent for Healthcare IT Today, Andy also writes often on policy issues related to the Internet and on trends affecting technical innovation and its effects on society. Print publications where his work has appeared include The Economist, Communications of the ACM, Copyright World, the Journal of Information Technology & Politics, Vanguardia Dossier, and Internet Law and Business. Conferences where he has presented talks include O'Reilly's Open Source Convention, FISL (Brazil), FOSDEM (Brussels), DebConf, and LibrePlanet. Andy participates in the Association for Computing Machinery's policy organization, named USTPC, and is on the editorial board of the Linux Professional Institute.

   

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