Comments on: Why can't pacemaker users read their own medical data?

By: Charlie B

Charlie B — Tue, 02 Oct 2012 18:33:00 +0000

If we strap you to a wall with duct tape, you will never be able to shoot yourself. If we never teach you or tell you anything, you will never know how to use a gun. Is prior restraint a valid argument? Should global sterilization be mandated, so that nobody will be born with the capacity to commit suicide? Where do you draw the line when you start saying it’s OK to take action “for someone’s own good”? Is preventing suicide a morally defensible goal, or is the decision to end one’s own life a human right?

By: Antinous / Moderator

Antinous / Moderator — Mon, 01 Oct 2012 20:16:00 +0000

I would say that the standard for a good physician is that he or she gives the patient a level of information proportional to the intelligence of their questions. On the other end of the equation, some doctors bombard their very uninformed patients with technical information that they can’t possibly understand or digest.

By: donovan acree

donovan acree — Mon, 01 Oct 2012 15:30:00 +0000

They actually have greater access to your medical records than you do. Sad but true.

By: donovan acree

donovan acree — Mon, 01 Oct 2012 15:28:00 +0000

So, it’s your position that patients should be kept in the dark as to the effectiveness of their treatment because without proper interpretation about results they may harm themselves.
It seems to me that the real problem is proper interpretation not having access to results.
Under current HIPPA law, patients have a right to see their complete medical record yet there is this pesky little exception to that rule whereby a doctor can withhold information if they feel it may endanger the patient.
Yet medical professionals everywhere bemoan patients who do not trust their doctors, choose not to get vaccines, and rely on holistic medicine. Do you think that perhaps withholding information from a patient about their condition may cause greater net harm than actually taking the time to show and explain test result a patient asks about? Or, are you just too busy to provide that level of care to those who employ you as their medical provider?

By: jeraliey

jeraliey — Mon, 01 Oct 2012 01:15:00 +0000

It’s actually not a stretch at all, as it turns out.

By: Guest

Guest — Sun, 30 Sep 2012 20:36:00 +0000

deleted

By: bkad

bkad — Sun, 30 Sep 2012 19:27:00 +0000

On the other hand, I’ve had pretty good luck getting x-ray films released to me, which they don’t want to do by default either. I had to sign like fiver pieces of paper but that was it.

By: bkad

bkad — Sun, 30 Sep 2012 19:25:00 +0000

I don’t normally share the average Boing Boing readers anti-corporate cynicism, but I have to admit there may something to do that. I was in a meeting at my own company just the other day that was about ‘MOSA’ design (modular open systems approach) in which we did have a couple people ask, “but if we make our systems inter-operable with our competitors, don’t we lose our advantage?”. Nevermind our customers are begging for this feature.

By: bkad

bkad — Sun, 30 Sep 2012 19:25:00 +0000

Medical devices are encumbered by all sorts of regulations, and maybe there’s some liability I’m not seeing. I can’t imagine people would be hurt by read-only access to their data, though, especially if they are made to sign a waiver. I remember participating in psych experiments in college where basically I had to sign a waiver that there was a risk that I might be faced with (paraphrasing) uncomfortable insights into my personality, and if I got too broken up about that it would be my own fault.

By: Charlie B

Charlie B — Sun, 30 Sep 2012 18:13:00 +0000

You forgot to mention the Earth crashing into the Sun in your terrorized fantasy.

By: kwhitefoot

kwhitefoot — Sun, 30 Sep 2012 17:20:00 +0000

Proof of concept code and hardware already exists, see http://www.theregister.co.uk/2008/03/12/heart_monitor_hacking/

By: Charlie B

Charlie B — Sun, 30 Sep 2012 15:55:00 +0000

If you are so timid that you can’t stand the possibility of any risk, perhaps you need to find another profession rather than making life decisions for patients without their consent. Seriously. I’d be dead right now if I didn’t fight people like you tooth and nail.

By: Charlie B

Charlie B — Sun, 30 Sep 2012 15:51:00 +0000

The problem is that you can’t half-open the device; either nobody can read it or all patients can.

What a complete load of bollocks. Ignorance of technology is not a valid excuse for opposing education and cheerleading the purposeful withholding of information.

By: Diogenes

Diogenes — Sun, 30 Sep 2012 15:29:00 +0000

Are you sure? That’s quite a stretch from saying “Do no harm” to adding “…and prevent self harm”.

By: andygates

andygates — Sun, 30 Sep 2012 10:11:00 +0000

“Do no harm” includes “don’t let the patient harm themselves.”

By: andygates

andygates — Sun, 30 Sep 2012 10:10:00 +0000

You know, that might be a fundamental truth. If lawsuits are a parasitic ecosystem grazing on data — as they appear to be — then more data inevitably means more lawsuits. We’re already seeing automation of bottom-feeding pseudo-legal stuff (Youtube etc content bots). I wonder if there’s anything useful that can be gleaned from this..?

By: andygates

andygates — Sun, 30 Sep 2012 10:05:00 +0000

Including clinicians. I work with thousands of them. They ain’t no IT geniuses.

By: David

David — Sun, 30 Sep 2012 04:33:00 +0000

It would be cool if the device would randomly ask you health questions via your smart phone or through email. That way when an abnormal reading popped up and a question arrived from it concerning what’s going on, you wouldn’t be alarmed. The doctor could then have a great set of metrics to figure out what you’re doing to help/hurt yourself. Was that weird reading due to forgetting to take your drugs at the right time, was it due to chasing down your kid who’s about to run in front of a car, or what?

The questioning could also get the patient to become more vigilant about their health issues too.

By: GlyphGryph

GlyphGryph — Sun, 30 Sep 2012 04:28:00 +0000

I’m just imagining someone will eventually, someday, figure out the difference between “read” and “modify”. -__-

(Hint: Assuming they only have read access, the appropriate number to imagine is “nobody”)

By: David

David — Sun, 30 Sep 2012 04:22:00 +0000

I’m just imagining all of the people who’ll use “password” to access their data.

By: Yan Min

Yan Min — Sun, 30 Sep 2012 04:01:00 +0000

I tried to get some data from a sleep study once. They will gladly print you a copy of the graph and the overall statistics but they looked at me like I was from another planet when I asked for access to the raw data they recorded. This was pretty interesting stuff like eeg, ecg, body motion, pulse, eye movement etc. Its also probably is relatively easy to dump from the software into a xls/csv file. The buracracy however is just too much to deal with.

By: Jim Saul

Jim Saul — Sun, 30 Sep 2012 02:15:00 +0000

They could go another route for the IP protection – bind everyone into a trade secret nondisclosure.

Were we still a functioning society, such a contract would be voidable on the public interest grounds alone, much less overreaching.

Alas…

By: David Gilbert

David Gilbert — Sun, 30 Sep 2012 02:01:00 +0000

This is true, however some folks have “liberated” the software so folks like me can use it illegally to treat themselves. I literally have titrated my pressure to the correct settings. This is probably why Sleep Apnea has a HUGE failure rate, as most people have no place to go to understand and the Dr.s have about 5 minutes to say things like: “We’ll up your pressure and see how it goes for the next month” when you need help Tonight as you have a big report/issue at work. I lost my job partially due to my sleep apnea, until I figured out how to get it under control (which is a daily/weekly struggle even after 2 years). My PCP understands about 10% of what I do about Sleep Apnea (I could train him!). The Dr.s at the Hospital sleep center just told me (after complaining) to raise my pressure myself.

PS: You don’t need software to tweak the machines, just the correct combination of buttons to press on the machine (at least the better ones).

By: dioptase

dioptase — Sun, 30 Sep 2012 00:29:00 +0000

No, not your nanny. But it only takes one dumbass to misuse the data and harm themselves to kick off a lawsuit. So the manufacture weighs making zero extra money versus a shitload of extra liability and naturally decides, “Duh! You don’t get the data!”

And yes, I make medical devices. And yes, we make these sorts of decisions. We go to extremes to minimize risk because it’s the right thing to do and good business.

By: spacedoggy

spacedoggy — Sat, 29 Sep 2012 22:35:00 +0000

Keren Sandler had the exact same problem when trying to obtain source code for her implanted device…

http://www.youtube.com/watch?v=5XDTQLa3NjE

By: Andy Reilly

Andy Reilly — Sat, 29 Sep 2012 22:34:00 +0000

… and law suit happy.

By: Diogenes

Diogenes — Sat, 29 Sep 2012 22:15:00 +0000

I don’t remember.

By: Snig

Snig — Sat, 29 Sep 2012 22:07:00 +0000

Not sure, got to thinking about the use of pillow fights in film and got all distracted. What were we talking about?

By: Diogenes

Diogenes — Sat, 29 Sep 2012 22:02:00 +0000

On a side note, a friend triggered his implant when he was starting a chainsaw on a wet lawn. A little stray electricity from the plug wire must have fooled the device and it gave him the full jolt. He woke up on his back feeling like he’d been kicked in the chest by a mule. At least he knows it’s on the job.

By: Diogenes

Diogenes — Sat, 29 Sep 2012 21:58:00 +0000

I want one I can stream online like the stock tickers!