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March 18, 2013 By e-Patient Dave 3 Comments

Wall Street Journal picks up “Gimme My DaM Data” song!

Click to view the story & & the video

I just learned that “The Wall Street,” as cool people call it, reported last Tuesday on a session at the uber-hip South By Southwest conference (SxSW), saying this:

SXSW Reporter’s Notebook:
Who Rules the Data?

The full text requires a subscription, but here’s the relevant snip:

… Privacy is only one data concern. John Wilbanks, chief commons officer at research nonprofit Sage Bionetworks, began a panel on “health 2.0” by playing a song called “Gimme My Damn Data.”

While acknowledging the great possibilities of data for improving science and individual health, Mr. Wilbanks lamented the currently “broken” system where people can’t easily use data about themselves. “It is very hard to open-source your data,” he said. “It is owned by whoever has it—and it might be considered a corporate secret or private.”

The power of art in a cultural revolution:

Last May in my Joseph H. Kanter Family Foundation talk at the National Press Club, I said “You know a movement’s becoming a revolution when the artists and musicians show up.” I cited Regina Holliday’s Walking Gallery of medical story paintings, and I cited this song. Indeed, now look: among the thousands of ideas propagated at SxSW, this is one that got ink in the Wall Street.

Thanks again to the amazing Ross Martin for writing the song and producing the video, and band mates Chris Brancato and Harry Greenspun with son Ben.

(As described below, it was originally “my damn data,” but Ross wrote “DaM”: Data about Me. Nicer, and more to the point!)

Now that it’s spreading, I gotta set up a Google Alert for this. I love progress.

(For those who don’t know the whole story of this rallying cry, here it is … it started with discovery of big errors in my record. Are there errors in yours? Your mother’s? Your kid’s? Will your doctors let you see? Find out! As the song says: “It’s all about me so it’s mine.”)

Filed Under: Uncategorized 3 Comments

Trackbacks

  1. Tweetchat on Wed March 20 about Gimme my DAM Data, Blue Button Plus and Commonwell | e-Patients.net says:
    March 20, 2013 at 9:13 am

    […] new with Gimme my DAM Data #gmdd ? – Wall Street Journal picked the story at SXSW conference https://www.epatientdave.com/2013/03/18/wall-street-journal-picks-up-gimme-my-dam-data-song/#.UUmxrBysh8E – Blue Button Plus – why should patients fight for it? #bluebuttonplus #abbi […]

    Reply
  2. Tweetchat on Wed March 20 about Gimme my DAM Data, Blue Button Plus and Commonwell–@yogileana | Knowledge of Medicine says:
    March 21, 2013 at 3:32 pm

    […] […]

    Reply
  3. EHR systems should enable the triple aim, not prevent it - A Shot in the Arm says:
    September 25, 2014 at 11:17 am

    […] The question before the Senate Appropriations Committee should be much broader. It's not just if the EHR systems are “preventing or inhibiting” unrestricted exchange of medical records. It's also whether these systems are enabling providers to readily store, access and mine the breadth and depth of all of the patient data generated within their own system. Think lab values, medical device data, and unstructured data as examples. Additionally, to be clear, we are not talking about securing access to the EHR data through a multi-week or multi-month consulting engagement by which the EHR vendor extracts the data from the provider’s EHR system and then delivers that data to the provider for their exploration. This is certainly feasible and may be a lucrative business for the EHR vendors, but it undermines the intent of the EHR systems. We know what e-Patient Dave would say, “Give me my darn data!” […]

    Reply

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