{"id":21484,"date":"2019-11-24T21:57:55","date_gmt":"2019-11-25T02:57:55","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=21484"},"modified":"2019-11-24T21:57:55","modified_gmt":"2019-11-25T02:57:55","slug":"my-data-and-me-brenda-denzlers-amazing-story-at-fhirdevdays","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2019\/11\/my-data-and-me-brenda-denzlers-amazing-story-at-fhirdevdays.html","title":{"rendered":"“My Data and Me”: Brenda Denzler’s amazing story at #FHIRDevDays"},"content":{"rendered":"

SPM member Brenda Denzler had Inflammatory Breast Cancer (IBC), which was followed by years of intractable symptoms that her doctors couldn’t diagnose – all their tests kept saying she was “fine.” “But I live with this body,” she says, and she knew things weren’t fine. Today her case has transformed substantially because data she collected and organized<\/strong> – data not requested by her doctors, but recognized as valuable – <\/em>has led to a likely diagnosis.<\/p>\n

This fall Brenda entered her story in a competition for the “DevDays” (Developer Days) for the HL7 FHIR community. (More on that below.) She was chosen as one of the four finalists who won a stipend to help them attend the Patient Innovator Track<\/a> at the event, in Amsterdam, which was held last week.<\/p>\n

As fate would have it, she then developed two conditions that meant no airplanes: DVT (blood clot) and pulmonary embolism. Rats! But you know e-patients … unstoppable, she recorded her voice onto her slides, which the conference accepted and played for her. Here you go. (Email subscribers, if you can’t see the video, click here<\/a> to play it on our YouTube channel.)\u00a0 It’s a pretty amazing 14 minute story.<\/p>\n