Hugo Campos Fighting to allow us to see our ICD data

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David882
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Re: Hugo Campos Fighting to allow us to see our ICD data

Post by David882 » November 4th, 2014, 7:53 pm

ROBO:

I am glad that you have some confidence in your Doc.

But please note that a few people have come up with options that the Docs never considered.

Here is but one real world example:

https://www.ted.com/talks/tal_goleswort ... _own_heart

The only reason this person was able to do what he did was because they gave him the data.
With Respect,
David

11 Sept 2012 / Idiopathic Ventricular Fibrillation
At about 2AM I started storming at home, and in the ambulance, and in the ER.
Sometimes I restated and sometimes I had to be defibrillated.
A number of times I went into arrest and stopped breathing.
External defibrillation count exceeded 18 and at some point the team induced a coma.
24 hours later I was revived and have never had another event.
13 Sept 2012 / Medtronic ICD was implanted.
My diagnosis is still idiopathic.

InSync
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Location: The Edge of America, SC

Re: Hugo Campos Fighting to allow us to see our ICD data

Post by InSync » November 5th, 2014, 8:11 am

Interesting video. Amazing story of collaboration between the disciplines. I haven't decided how I feel about having access to my data. The main reason is that I don't understand what the raw data, or any raw data, would look like. David, it would be helpful if you could help me understand how that data would look and how I could use it. Would I need some kind of software to compile it into something readable?

I don't mind device manufacturers collecting information for research and development purposes. They happy byproduct is that our docs are notified of problems. I'm not very happy that the device manufacturers have me in a database that identifies me as an ICD recipient. I understand that it is out of necessity and mandate, but I don't like it.....particularly since the choice to share it is their discretion. There is nothing inherently noble about any corporation.....even if their product can save lives. Paranoid? Too many enemies? Maybe, but I don't like it.
Dilated Cardiomyopathy, LBBB, CHF
St. Jude CRT-D 5/12
The beat goes on.....

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David882
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Re: Hugo Campos Fighting to allow us to see our ICD data

Post by David882 » November 5th, 2014, 7:28 pm

InSync:

Perhaps that is my problem as well. i don't like someone basically telling me they know best for me. i prefer to make an informed decision. Like i said, I would like to have some insight in the experiment that i appear to be involved in. Of course it could be that i am to stupid to understand. In which case providing the data does no harm and providing a data file is not expensive but they could even charge a fee.

So what would the data look like and my that is a question. First data is a nebulous term with different meanings, representations, and uses for different organizations. Let us just assume that it is not stored in some salted-encryption file but is instead a file of numbers. Think of a room with buckets covering the entire floor and the data is simply place in a bucket based on what it represents and the time it occurred, perhaps it is just long strings of data and every so many digits represent a specific measurement. It could be in any number of storage means/methods but lets assume that it is given and a key to how to interpret/understand that data is provided. Now that one has the data and has the "key" to understanding it, one can organize the data into meaningful constructs.

For the sake of argument lets use something like Excel and/or Mathcad for visualizing the data. So now one can graph the data but more importantly one can compare the data over time and look for trends in the data over years or perhaps decades. Perhaps I look for odd events that appear out of no where...much like my SCA. I assure you that the 10-15 minutes review that my data gets when I go to the doctor would be insignificant to what a motivated person would do. The question is what would i find, would it be of value, could i save the world, end cancer, find true love, or something of even greater value...i do not know.

For me that is part of the fascination in looking at data. Sometimes the data tells us nothing, other times far more than we expected, and sometimes...something wonderful. But since i can't even get the data, i am just the rat in the maze...but i don't even get a piece of cheese. :bang:
With Respect,
David

11 Sept 2012 / Idiopathic Ventricular Fibrillation
At about 2AM I started storming at home, and in the ambulance, and in the ER.
Sometimes I restated and sometimes I had to be defibrillated.
A number of times I went into arrest and stopped breathing.
External defibrillation count exceeded 18 and at some point the team induced a coma.
24 hours later I was revived and have never had another event.
13 Sept 2012 / Medtronic ICD was implanted.
My diagnosis is still idiopathic.

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Ozchrissy
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Location: Australian

Re: Hugo Campos Fighting to allow us to see our ICD data

Post by Ozchrissy » November 5th, 2014, 11:25 pm

I get 1000's of PVC's every interrogation, my heart rate is about 100 bpm, could you imagine how much data I would get. Don't know if my computer memory could cope with it all. Wouldn't this be just duplicating what our devices do anyway, and what information I already get. My summary always tells me data on all the trends.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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David882
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Re: Hugo Campos Fighting to allow us to see our ICD data

Post by David882 » November 6th, 2014, 8:51 am

Ozchrissy:

Excellent comments and questions.

First let’s examine the questions of computer capacity and data mass or size. The answer to this concern is twofold but basically it is just a matter of money. So let’s assume that the manufactures were a bit more patient friendly. Prior to getting the data one simply asks how much data is there in these files. Now let’s just go crazy mad and assume that the ICD is holding a lot of data. Let’s assume that it has 500 Gigabyte for storage. (I have to guess at this based on very little actual information because the ICD makers don't provide a lot of details. My guess is our ICDs don't have this much.) So one would just go to Best Buy (USA) and purchase a 2 Terabyte external hard drive for about $100 (USA). Could be some issues with data transfer rates but once more one can increase data transfer rates with a purchase of the correct hardware. Even if the ICD holds 4 Terabytes of data, well I can just purchase 3 external hard drives and for under $500 bucks the memory problem is solved. This being said, basically memory is cheap now days, so accommodating the data size should not be a problem.

Can your computer process they data, i really don't know. But for the sake of argument let’s assume that it cannot. I would note that speed of a give processor is resolved by simply waiting. Processing the data may take an hour or more but that is the nice thing about our universal machines called computers...they are very determined and they will run for days working on a given set of data. While I am off enjoying tea and crumpets or a bit of a snooze the computer is crunching numbers. So let's assume that one is forced to buy a new computer. Specifically, one set up for lots of graphics and number crunching and that would sound like a desktop meant for gaming. This would be the expensive part, that is if one wanted speed. Anywhere from $2,000 to $8,000 (USA) but one would want to know more about the actual data prior to making the purchase. In other words if we knew just a bit about the data and how much of it there was, then getting the machine to process the data could require an upgrade.

Even if the data research is a bust ... New gaming computer tahdahh

Finally, what could one learn new. Well now what could you or I discover that the super deluxe, cyber enhanced minds at the manufactures have not considered? This is a bit of the chicken and the egg question; I would need the data to answer that one. Let me give you one example of what a man and his wife did with data because they had passion for their dying son. We should not underestimated the abilities of determined and passionate people. Have you ever read about Lorenzo's Oil?

http://www.webmd.com/vitamins-supplemen ... %27s%20oil

Lorenzo Odone lived in Washington and he was diagnosed with an incurable disease and given less than two years to live. His remarkable survival is due to his parents' single minded refusal to accept the Doctors' grim prognosis. With no scientific training they took on the medical establishment and set about finding a cure. In around 1986 it seemed they had succeeded. The Doctor's told the parents to not read the medical papers because they could never understand them. Yet, they did read them and became rather the experts. There is a movie about this but it is a bit of a fairytale about a miracle cure. My understanding is that the parents discovered a prevention but not a cure. Still, rather impressive when you consider their background and what they did with the available data. They just had a different perspective and one the trained professions scoffed at repeatedly...sometimes the training that makes one expert also makes one blind. This is not always the case and as a matter of fact, these highly trained and skilled Doctors in industrial countries have a solid answer. So my line of thinking should not be expected to produce results other than what we already know. That is that the data collected really tells us nothing more than what we are told. However, i would like the opportunity to at least look at my raw data because a different view can sometimes provide some amazing results. History is full of these examples.

I hope this answers your questions. If not try reshaping your questions and give me another go.
With Respect,
David

11 Sept 2012 / Idiopathic Ventricular Fibrillation
At about 2AM I started storming at home, and in the ambulance, and in the ER.
Sometimes I restated and sometimes I had to be defibrillated.
A number of times I went into arrest and stopped breathing.
External defibrillation count exceeded 18 and at some point the team induced a coma.
24 hours later I was revived and have never had another event.
13 Sept 2012 / Medtronic ICD was implanted.
My diagnosis is still idiopathic.

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Ozchrissy
Posts: 7266
Joined: September 27th, 2008, 9:28 am
Location: Australian

Re: Hugo Campos Fighting to allow us to see our ICD data

Post by Ozchrissy » November 7th, 2014, 2:16 am

I can now understand why some of you want this data, could I understand what I was looking at with it I probably would consider it myself. Thanks David.
“I am not what happened to me, I am what I choose to become.” Carl Jung

Diagnosed with cardiomyopathy in 10/99
LBBB & VT diagnosed Feb 06
Guidant Biventricular Pacer ICD inserted Feb 06: Boston Scientific Incepta CRT-D inserted May, 2012
Oesophageal Cancer, 2012, Gall Bladder & Septicemia 2014 resulting in VFib and severe heart damage
Bare Metal Stent May, 2012 Mitral Valve replaced 2015
Meds: Entresto, Bicard, Coralan, Eurtorxsiq, Frusehexl, Spiractin, Sigmaxin, Creon, Warfarin,
Appropriate Shocks for Ventricular VFib.

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hugooc
Posts: 335
Joined: November 24th, 2007, 12:01 pm

Re: Hugo Campos Fighting to allow us to see our ICD data

Post by hugooc » March 29th, 2015, 12:47 pm

I just now saw this.

I explain my POV in this recent essay posted to Slate.

Feel free to comment on the Slate page if you'd like.
http://www.slate.com/articles/technolog ... vices.html

This is an important topic. Patients deserve access to ALL our health data. It is a matter of civil rights.

Healthcare will not be fixed until patients control their own data, which will ultimately lead us to transparency and autonomy.

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