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Should Patients Have Access to Implanted-device Data?

Posted December 05, 2011 8:43 AM

Medical devices like implanted cardiac defibrillators generate data so doctors can monitor and review patients' conditions. But patients generally are not allowed to monitor that data themselves to help determine what may trigger abnormal heart rhythms. Do you think patients should have unconditional access to data about their own bodies?

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#1

Re: Should Patients Have Access to Implanted-device Data?

12/05/2011 11:35 AM

I don't think there is a legal obstacle for patients to monitor a device that belongs to them and that is very important to their health, BUT doing so will surely affect the patient's psyche and have adverse effects on their heartbeat rates, anxiety and stress levels, much worse if they (which most likelly will happen) missinterprete the data. Let the Pros take care of that, relax and live longer !.

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#2
In reply to #1

Re: Should Patients Have Access to Implanted-device Data?

12/06/2011 6:07 AM

Conversely it could help the patient feel more in control, and may well make them feel less stressed.
Personally I would want as much information as possible. There are plenty of doctors dafter than me.
You really do need to keep an eye on the medics as they are likely to tell you that the tremor in your arm is psychosomatic rather than an side effect of the medication! (true illustration)
Del

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#3

Re: Should Patients Have Access to Implanted-device Data?

12/06/2011 7:19 AM

Knowledge is power.

Not "allowing" patients to know is a power trip for the medical profession.

Doctors don't like it when the patient asks them to please explain. They feel threatened by those outside their clique.

It's rare to find a doctor who will admit that they don't know and to say that they will find out.

It would be empowering for the patients.

Access to the means to be able to monitor is another issue.

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#4

Re: Should Patients Have Access to Implanted-device Data?

12/06/2011 8:26 AM

Whether it causes stress or not, anything less than full disclosure is unacceptable. However, patients should be able to opt out from receiving information if it bothers them.

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#5

Re: Should Patients Have Access to Implanted-device Data?

12/06/2011 8:52 AM

It is one of the patient's rights to know and understand anything and everything that concerns to their own well being. Since the contents of the documents pertain to their own health, they are entitled to it so much so should actually be the one who should have the say to decide who they can show it to! Having these information readily available, the patient can easily seek and ask for 2nd or 3rd opinions from any other specialists or practitioners that can generate their opinions and interpretations based from that same personal health records... By doing so may minimize patient's cost, pain and sufferings.

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#6

Re: Should Patients Have Access to Implanted-device Data?

12/06/2011 2:23 PM

Sure, why not? They paid for it and it's in their body. What they do or don't do with the information is up to them. If it bothers them and makes the physiological responses more pronounced, or whatever, it's up to them. Let them take that information to another doc and get a second/third opinion.

Docs aren't God and sometimes misinterpret the data.

Ultimately it is the responsibility of the patient to make the decision for whatever is done. The docs simply make recommendations.

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#7

Re: Should Patients Have Access to Implanted-device Data?

12/06/2011 7:51 PM

I think that patients should have full access and control of devices that they depend on to maintain their health, both implanted and durable medical equipment.

The argument frequently given is that people are too dumb to look at, and adjust the machines and their treatments, therefore, doctors must act as gatekeepers to protect the public from themselves. This argument is total hogwash. Let's look at a couple of common conditions where people depend on machines and medical information for their daily health. These conditions are diabetes, and sleep apnea.

When a patient has diabetes, they measure blood glucose levels several times a day and adjust exercise, diet, and medication administration to keep their body functioning within the parameters they choose. This disease is a complicated ballancing act that requires attention several times a day. If the patient makes the wrong decision they could go into a coma, and even die. Despite these dangers, millions of people are allowed to manage their diabetes daily with no intervention by medical personel. Clearly, it's not too dificult for normal people to do.

Let's contrast that with another common condition, sleep apnea. Sleep apnea causes the patient to stop breathing while they are asleep. Some patients stop breathing dozens of times during every night. Modern machines used for treatment record all kinds of information every time the patient sleeps, including: the treatment pressure, how often they breathe, how often they stop breathing, the depth of their breathing and how much and how often their mask leaks. In contrast to diabetics, the sleep apnea patient has all this information kept hidden from them. Even so, the patient knows when they have gained or lost some weight, are congested due to a cold, and when they have not had a good night's sleep in the past week. In short, the patient knows, with a little training, when the machine needs to be adjusted, which direction and about how much. If they're wrong, they won't die, their sleep just won't improve. Looking at the machine data will tell the patient if they are getting better or worse. The machines are incapable of being set dangerously high.

To get an adjustment to the machine, the sleep apnea patient has to take the machine to their supplier to get it's information retrieved, then go to their specialist doctor, to relay their symptons, and the data. Only then, with the doctor's approval, in the form of a prescription, the patient takes the machine back to the supplier to have it adjusted. Usually, the adjustment procedure consists of a specific and secret sequence of button pushing while the machine is booting after a power failure. Many of these machines have a readout on the screen listing the current pressure output. The pressure can also be tested with about 2' of clear plastic tubing, a tape measure, and a little water. It's not rocket science.

Health professionals must rely on the diabetic patient to report their progress. These reported memories, along with some blood tests that can partially confirm the reports are used as the basis of the treatment recomendations.

Health professionals treating sleep apnea patients have the machines gathering and storing data every time the machine is turned on. This data includes any changes in pressure, as well as the treatment results, on a night by night basis.

Why is one group of patients allowed access to the information, and the other group not allowed access? Why is one group allowed to control their own treatment, and the other group not allowed the same control?

I argue that the only reason diabetics are allowed to control their own medication (insulin), and treatment, is because it is logistically difficult/impossible for medical professionals to do it for them. However, they are a good example of people being able to interpret data from a machine, and make treatment adjustments, on their own, for their own benefit.

Why are sleep apnea patients denied access to the information their machines are already storing? Why are they denied control of their treatment machines? The simple and obvious answer has two parts. The first part is: it is not imediately life threatening. Only because frequent, timely, adjustments are not required to keep the patient alive, is the second and most important part of the answer made possible. The second part is: The 'health profession industry' has a vested interest in forcing patients to return. There is nothing better for the bottom line than repeat customers.

Below is more information on sleep apnea for anyone interested.

When people sleep, their muscles including the throat muscles relax during the portion of time that you are dreaming, called REM sleep. REM sleep is when the brain does maintenance on itself. During REM sleep the body is paralyzed naturally. This is to prevent injury to the body while reacting to the normal maintenance electrical activity in your brain. Our mind tries to interpret this electrical activity and comes up with dreams as an explaination. In people that have sleep apnea, the relaxing of the throat muscles causes the collapse of their airway. With their airway cut off, they stop breathing. Cutting off the oxygen supply to the brain, causes it to raise an internal alarm that causes the patient to partially or completely wake up. This constant waking from REM sleep means that your brain cannot perform the maintenance needed. The results are waking tired, being frequently exhausted, and depression, just to name a few. The frequent alarm reaction of the body also means that blood pressure will go up and can lead to enlargment of the heart.

The treatment for sleep apnea commonly involves wearing some kind of mask while sleeping. Air under a controlled pressure is blown through the nose and or mouth inflating the airway, allowing breathing and sleeping without interuption. The amount of pressure needed varies from person to person, and also varies with the weight, sleeping position, and the partial obstruction of the airway due to symptoms of illness or allergies. Modern machines used in the treatment of apnea record all kinds of information while the patient sleeps, including how often they breathe, how often they stop breathing, the depth of their breaths and how much and how often their mask leaks.

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#8

Re: Should Patients Have Access to Implanted-device Data?

12/07/2011 12:10 AM

It's not like you are going to void your warranty if you monitor your own health.

Medical professionals conspicuously don't offer warranties. All care and not much responsibility....Medicine is such an approximate science.

The knack is absent their workshops.

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