A petition calling for direct real-time patient access to loop recorder, pacemaker, and cardiac defibrillator data
Each year, hundreds of thousands of people are implanted with loop recorders, pacemakers, and cardiac defibrillators.
In addition to providing life-saving therapy, these medical devices collect and store advanced diagnostic information pertaining to the device's normal function and a patient’s clinical status. This information is transmitted to a secure and private network owned by the manufacturer of the device.
Some of the data collected is made available to clinicians through a secure website, enabling doctors the convenience of monitoring patients without the need for in-office visits.
Unfortunately, this data is not made directly available to the patient who originates it.
Access to this data can do more than just help patients take control of their disease. It may also help with timely identification of device-related malfunctions, and may ultimately contribute to better patient engagement and improved health outcomes.
Knowledge is power. And a patient privy to his/her data is an empowered partner in his/her own health and healthcare.
As a device patient, I know that direct real-time access to my device's data can help me track, understand, and manage my condition better, become more active in my care, and work more effectively with my healthcare providers. I have the right and responsibility to care for myself, but cannot do so without information.
I hereby request that my device company give me direct real-time access to my device data.
It's my device, my data, my body, and my future. I want my data, and I want it now!
*please note: your email address will not be published
#icduser
#GimmeMyDaMData
Updates
August 6, 2013
The manufacturers are finally being forced to acknowledge that patients are not just passive recipients of their hardware. We are building the kind of pressure that makes it impossible for these corporations to hide our own health data behind their proprietary walls any longer.
6 Comments
Having access to my own stats would help me understand my condition a lot better, instead of having to wait for the next appointment months away.
My husband has a pacemaker and we are always waiting on the doctor to call back. Let us see the info ourselves so we dont have to worry so much.
TOTAL NONSENSE. The patient is the one living with the device 24/7. Give us access.
Good goal. Should have been this way from the start honestly.
its my heart so why cant I see the data? Makes no sense to keep it locked away.
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A petition calling for direct real-time patient access to loop recorder, pacemaker, and cardiac defibrillator data
Each year, hundreds of thousands of people are implanted with loop recorders, pacemakers, and cardiac defibrillators.
In addition to providing life-saving therapy, these medical devices collect and store advanced diagnostic information pertaining to the device's normal function and a patient’s clinical status. This information is transmitted to a secure and private network owned by the manufacturer of the device.
Some of the data collected is made available to clinicians through a secure website, enabling doctors the convenience of monitoring patients without the need for in-office visits.
Unfortunately, this data is not made directly available to the patient who originates it.
Access to this data can do more than just help patients take control of their disease. It may also help with timely identification of device-related malfunctions, and may ultimately contribute to better patient engagement and improved health outcomes.
Knowledge is power. And a patient privy to his/her data is an empowered partner in his/her own health and healthcare.
As a device patient, I know that direct real-time access to my device's data can help me track, understand, and manage my condition better, become more active in my care, and work more effectively with my healthcare providers. I have the right and responsibility to care for myself, but cannot do so without information.
I hereby request that my device company give me direct real-time access to my device data.
It's my device, my data, my body, and my future. I want my data, and I want it now!
*please note: your email address will not be published
#icduser
#GimmeMyDaMData
Updates
August 6, 2013
The manufacturers are finally being forced to acknowledge that patients are not just passive recipients of their hardware. We are building the kind of pressure that makes it impossible for these corporations to hide our own health data behind their proprietary walls any longer.
6 Comments
Im tired of feeling like a stranger to my own health info. If the machine works the data belongs to me.
Having access to my own stats would help me understand my condition a lot better, instead of having to wait for the next appointment months away.
My husband has a pacemaker and we are always waiting on the doctor to call back. Let us see the info ourselves so we dont have to worry so much.
TOTAL NONSENSE. The patient is the one living with the device 24/7. Give us access.
Good goal. Should have been this way from the start honestly.
its my heart so why cant I see the data? Makes no sense to keep it locked away.
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Im tired of feeling like a stranger to my own health info. If the machine works the data belongs to me.