PHI and Speed Bumps

Yesterday, Bob posted on the increasingly intrusive role data and its management play in modern health care. But it goes beyond physicians typing in notes on their iPads:

"The small box inside Amanda Hubbard's chest beams all kinds of data about her faulty heart to the company that makes her defibrillator implant."

That data gets shot to her cardiologist, but is essentially inaccessible to Ms Hubbard.

Wait a minute, Henry, haven't we seen this show before?

Indeed we have:

"Hugo Campos has [an ICD] buried in his chest to help keep him alive. But he has no idea what it says about his faulty heart."

All the pertinent data is collected and then sent back to the manufacturer, which then shares some of it with Hugo's doc."

So why the re-run?

Well:

"Medtronic [the device's maufacturer] says federal rules prohibit giving Ms. Hubbard's data to anyone but her doctor and hospital."

But it apparently doesn't prohibit Medtronic from seeking to make a buck off that data. The so-called "money quote," though, is this:

"[B]usiness agreements with doctors and hospitals restrict [Medtronic] to relaying information only to them."

This is reminiscent of the discounted rates insureds pay for in-network covered services, but which are excluded for those that fall outside the plan. That is, these agreements are quite lucrative for the providers (be they hospitals, device manufacturers or doctors), but not so much for the actual patient.

One argument will be that laypeople have no real use for the data because it's incomprehensible to them anyway; we already know from Mr Campos' experience that this isn't necessarily true.

A second argument would be that the law prohibits manufacturers from disclosing that data. Actually, my layperson's read is that since it falls outside the rubric of HIPAA (and/or the ObamaTax), manufacturer's aren't required to disclose it. Not quite the same thing.

So we'll ask again: Who (really) owns the data?