I’m at the annual IHI Forum in Orlando, in an all-day workshop (class photo at left) titled “Whose Care Is It, Anyway … and Can Health IT Help?” Laura Adams of the Rhode Island Quality Institute was just talking about the social obstacles to data mobility – doctors who don’t want to share their records with other providers. She cited something a patient told her:

You make me sign a consent form to SHARE my data; you oughta ask my consent for you to HOARD it.

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A lot of great stuff is happening here at IHI. Medical muralist Regina Holliday created a great painting (see photo above; I hope it will be auctioned), and at my table I found Abington Memorial Hospital, who wrote a report function for their EMR system so they can hand the patient a daily care plan every day, so they can help manage care!

Regina is one of about 50 patients who were flown in for a Patient Advocate Summit yesterday. All the patients were given scholarships to attend the whole conference. But, they have to donate their time – more about this in a moment – so Regina and others were unable to stay for the whole event. Regina also has substantial babysitter expenses.

Primary sponsor for patient participation is the Cautious Patient Foundation, with twenty others providing support. Thank you!

It will be great to have patients in the IHI conference sessions. Note, though, that they still have to donate their time. As I said in January, I bet this is one of the key reasons our health policies haven’t solved healthcare: everyone BUT the consumer/patient gets paid to be there, and we patients have to take time off work.

How many EMR or hospital employees would attend those meetings if they had to take time off work?

And that, ladies & gents, is part of why our policies allow doctors to hoard our records. Without our consent.

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