"Here's your XML file. And your $797 bill." Am I being penalized for asking for my data? #healthcare #ripoff pic.twitter.com/bVGMiCYvUP
— Hugo Campos (@HugoOC) September 6, 2013
You might think the hard part was over for Hugo Campos, once he won a small victory in getting access to his data. He recently convinced Medtronic to “add a script to Stanford’s Paceart system to gather Campos’ data specifically and convert it into a XML file that can be opened in Excel or other spreadsheet software.”
With the Rise of AI, What IP Disputes in Healthcare Are Likely to Emerge?
Munck Wilson Mandala Partner Greg Howison shared his perspective on some of the legal ramifications around AI, IP, connected devices and the data they generate, in response to emailed questions.
The bill for collecting the data and sending it to him was $797, with $192 going to the doctor and $605 going to the hospital. Campos tweeted the bill and shared a link to the report.
What is an XML feed, you may wonder? It’s designed for easy, fast exchange of information on the Web, as wikipedia explains:
The design goals of XML emphasize simplicity, generality, and usability over the Internet. …it is widely used for the representation of arbitrary data structures, for example in web services. … hundreds of document formats using XML syntax have been developed… XML-based formats have become the default for many office-productivity tools, including Microsoft Office (Office Open XML), OpenOffice.org and LibreOffice (OpenDocument), and Apple’s iWork.
It’s not proprietary or complicated or limited to one narrow use. This makes it even more ridiculous that Campos’ bill for receiving this information was so high. If he has the key for the XML feed, he could get the stream directly from the device and interpret it.
A Personalized Approach to Medication Nonadherence
At the Abarca Forward conference earlier this year, George Van Antwerp, managing director at Deloitte, discussed how social determinants of health and a personalized member experience can improve medication adherence and health outcomes.
Campos is a super-informed, super engaged patient. He has a spreadsheet that he uses to track what kinds of arrhythmia he has and looks for triggers. This spreadsheet is on his phone. If anyone has earned a free stream of his device data, it is Campos.
