Devices & Diagnostics, Hospitals, Patient Engagement

Turns out the cost of “my dam data” is just like the rest of healthcare: Ridiculously high

You might think the hard part was over for Hugo Campos, once he won a small victory in getting access to his data. Turns out the bill for his open data advocacy is pretty high.

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.”

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.

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.

Veronica Combs

Veronica is an independent journalist and communications strategist. For more than 10 years, she has covered health and healthcare with a focus on innovation and patient engagement. Most recently she managed strategic partnerships and communications for AIR Louisville, a digital health project focused on asthma. The team recruited 7 employer partners, enrolled 1,100 participants and collected more than 250,000 data points about rescue inhaler use. Veronica has worked for startups for almost 20 years doing everything from launching blogs, newsletters and patient communities to recruiting speakers, moderating panel conversations and developing new products. You can reach her on Twitter @vmcombs.

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