Data Independence is Up to Patients Now

Scott Mace, June 23, 2015

For patients to get the medical data they deserve in a way the HIPAA Omnibus law says they deserve it, they need to demand that providers cut the red tape. Whether they will do so remains to be seen.

When former national coordinator of healthcare IT, Farzad Mostashari MD, stood on stage at the annual HIMSS conference in April and called for a national day of action on July 4 for patients to request their medical records, headlines followed.


Farzad Mostashari, MD, ONC

Farzad Mostashari, MD

But now that the headlines have died down, and the date is approaching, I wonder just how big a day it will turn out to be.

Russ Branzell, president and CEO of CHIME, expressed sympathy about patients' difficulty in obtaining their records. But CHIME still supports the gutting of Meaningful Use requirements that providers prove actual patient viewing/downloading/transmitting of their data, a decision now in ONC's hands.

"When you have it all fragmented, in multiple records without a complete record, it actually can be of little value and actually be more dangerous without having all of it combined, which is the journey we're on," Branzell told me back in April.

Even now, the national day of action isn't much to look at in the way of an organized or sponsored initiative. It is supposed to take place on July 4, but if you go looking for it on the Web, mostly it converges around some blog posts, videos, and a Twitter hashtag, #dataindependenceday.

While my sympathy lies squarely in the camp of patients getting the data they deserve in a way the HIPAA Omnibus law says they deserve, I am not certain that things will be much different on July 5.

An HIE of One

When I spoke with him last week, Mostashari downplayed what a single day of action could yield.

"There is no legitimate business policy, practice, privacy—nothing—there is no legal basis for standing in the way of that what we call an HIE of one. And the individual is the one who can break any information blockage, but they have to ask," Mostashari told me.

"That is what the day of action is, or really it's going to end up being, I think, the launch of a yearlong campaign. [It will] make it easy for people to ask and to document their experience, [and] to bear witness to what happens when you do ask. Let's fix it, and make it easy so that people can be the ones to break through the information blockage."

Scott Mace

Scott Mace is the former senior technology editor for HealthLeaders Media. He is now the senior editor, custom content at H3.Group.

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