When a hcp of any sort refuses to hand over copies of a report on the spot, I now say, “That’s ridiculous. These legally belong to me and you should be able to send them electronically by now.” They don’t send them electronically, but it removes any barrier to my getting a preliminary reading, which saves time and anxiety.

I also notice that the news media has run some “Question your doctor, he is not God” pieces lately, which encourages patients to question procedures and ask for accountability. Amazing that in the old days the medical business was able both to maximize profits and preserve the Doctor as God culture.

So things are not yet where e-patients would like to see them, but there is a sea change in the culture, meaning mainstream media is accepting some of the premises of the movement.

My latest bad data story is ALMOST comical, and introduces another dynamic into the witches brew — technical glitches and clerical staff without the training/authority to help.

I had a PET/CT on Saturday and, as is my practice, waited afterward to pick up CDs of the study. It’s very important that I have them because, while my onc can, at long last, look at the images online, I’m going to Mt. Sinai for a consult tomorrow, which has no connection to my local PACS system.

When I opened the disc at home, low and behold, it was incomplete. This has happened to me before (truly, I’ve seen it all). It was frustrating enough not to be able to see the images that might give me a clue as to how my current TX is working — even more frustrating that I didn’t have a good set of data to bring to my consult.

When I called the Radiology desk to let them know about the error and find out if I could get correct copies, they let me know that they’d been having a problem with the system. Would’ve been nice to hear that before going on a goose chase!

It’s not 72 hours later, and the system is still broken. My consult is tomorrow and I may not have the images that, quite frankly, are life and death to me.

I wish the kind but out of their league clerical staff had told me of a potential problem, or at least checked the discs before they gave them to me. Even more to the point, I wish someone could figure out how to make the data pipes at my hospital talk to the data pipes at Mt. Sinai so I have a chance of getting the answers I so critically need.

Judy