Patient voices have been working for decades to achieve access to their medical records, which have always been locked up in the hospital. No more: new rules went into effect on October 6 that mean all your health data must be available for download by apps, online, by end of year.
This so-called “Cures Rule” is part of the continuing work of the 21st Century Cures Act enacted by Congress in 2015. The Act includes many other things to improve development of cures, but for patients a vital new requirement is that health data must now move easily between computers. It’s common sense for everyone in healthcare, and for patients it’s an immense win for justice (fairness): at last we can see about ourselves what the people treating us can see.[Read more…]
In July I gave a virtual talk for Dysautonomia International. Dysautonomia is a family of different conditions, sometimes surprisingly diverse, all related to the autonomic nervous system (ANS). A patient-started and patient-run organization, Dysautonomia International is doing a stupendous job of educating and advocating about this field. The purpose of my talk was to encourage the membership, too, to be proactive in speaking out about how they see things.
The video below is the entire 82 minute closing session of the conference. My talk starts around 24:00, but I encourage you to watch those first minutes, to listen in as patient/founder Lauren Stiles presents what the organization has been doing and introduces this year’s three award winners. This is a great advocacy organization![Read more…]
Speaking isn’t just a business – it’s a vehicle for accomplishing what we really need: changing how people think … especially, empowering them to take effective action, to become involved in their health. Here’s a photo from a speech to radiologists, encouraging them to share images with patients:[Read more…]