Obtaining my data from Merlin

I have a Merlin reader that transmits pacemaker data to corporation, then to cardiologist.

Today at cardiologist, I grabbed a printout. It has daily graphs of percent time a various levels of exercise.

Asked the nurse if there is some way for me to get this info on a regular basis, and was told "no" due to confidentiality.

Now this info would be ideal coupled with my daily exercise notes on swimming and walking.

How do I get the data? I don't need all the output. I want just that info.

Incidentally my horoscope today says "This isn't the best day to ask for feedback." The author must be psychic.

Any ideas on how to get my own data?

Thank you

6 Comments

Like Frank said

by walkerd - 2011-09-01 07:09:33

I doubt you will get that info that is transmitted everyday. like he said the way it was told to me it is monitored probably by a puter and have certain things set up if it is flagged by the program is sent to dr. and Im sure that what is not bad or flagged is terminated info, with the amount of people that send Im sure the info that is sent everynite is not saved unless it finds something that is abnormal..

dave

It is your data...

by pogo1020 - 2011-09-01 09:09:22

It is not a confidentiality issue because it is your data...HIPAA applies when someone else is wanting health info on you, but your data is yours... the other issue is that they are too busy to share it with you daily. I have a Merlin too and while the pacemaker is 21st century, the Merlin is squarely 1990s...dial up modem connections... I certainly hope that St. Jude is working on a simple app for my smartphone to download and transmit the data. It would be a lot easier to share it if you had access to your electronic account on the server and could review it yourself.

Getting the data

by ElectricFrank - 2011-09-01 12:09:28

Confidentiality should not be an issue. It is your records which you have a right to. The nurse is the wrong one to ask. She just flips out an answer that she has heard or thinks will stick.

There like would be a problem getting very frequent customized printouts. That would take extra effort on someones part to set up. My guess is the computer at the central data facility likely check and flags anything that needs checking. Otherwise, the cardiologist would only print out a report when you have an office visit.

There is a move afoot in the medical monitoring field to make more data available to the patient. The ideal situation would be for them to have a web site that we could log onto and see our data. I think it's coming.

frank

Will write cardiologist

by sfbaywalk - 2011-09-01 12:09:33

I want a copy of the routine report to come to me. I can correlate their data to my own exercise logs to get a sense of what activities are taking me to what level.

Or..... maybe I can find a hacker to rip me a copy of the data. Lord knows all these hackers need useful work ;)

Interesting

by pacerpaul - 2011-09-01 12:09:38

I agree with Frank - I think the nurse is giving you a pat answer. The data is about YOU, not someone else so how can it be confidential? I also have Merlin and when I am at the doctor I always ask for (and get) a copy of the report. The past 4 weeks I have had to send transmissions because Im in a-fib and the doc is trying to get me back to normal sinus rythm. I go tilo see him tomorrow and I will ask for copies. Next time ask the doctor instead of the nurse. You might get a different answer. Good luck!

Paul

Talked to St. Judes

by sfbaywalk - 2011-09-04 03:09:08

The raw data are compiled at St. Judes into a weekly summary report. One graph in the report is a daily summary of % time at different heart rates (80%+, etc). For those engaged in regular exercise, the uses of that data are very clear.

My clinic can log in and view the weekly compilation with graphs and stuff, except the password takes the doc to all of his patients. So I can't use that password, and the clinic would have to download my individual report and email it to me.

The more obvious solution would be for St. Judes programmer to give us each an individual password and let us look at our own data summaries.

I'll figure out who to write and draft a letter. Would help if other PM users made the same request.

This is a fairly simple programming job .... just setting up individual accounts.

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