Requesting Pathology but they don't want to release...

Posted by ExaltedSunrise @darrenh05, 1 day ago

If anyone could help with suggestions, I'd be grateful.
I have done NGS at a major center in NY. I have requested my Digital Whole slide pathology images and a few other things (VCF file, BAM/CRAM files, FASTQ files etc). They say the policy is that the medical records is the clinical result - not raw data.
I am wanting this above for further testing possibly with more advances/sophisticated AI. I'm not alleging an error in testing.
How do I get what I am requesting?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

Easiest way...have another provider request them.
Harder way...Have your lawyer send a demand letter.

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Profile picture for mjp0512 @mjp0512

Easiest way...have another provider request them.
Harder way...Have your lawyer send a demand letter.

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@mjp0512
I was thinking that too. Does it have to be another oncologist or could my urologist request/demand? And what can they say to put pressure on them to release?

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Profile picture for ExaltedSunrise @darrenh05

@mjp0512
I was thinking that too. Does it have to be another oncologist or could my urologist request/demand? And what can they say to put pressure on them to release?

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@darrenh05
I would think anyone in a 2nd opinion position should have no trouble getting them. I have little patience for crap like this.

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Unless you signed off on these records they are "your" records. Under Hipaa laws you have every right to "your" records. Most if not all of these records, test results, etc can be downloaded from your hospital / doctor portals. I can download the MRI & PSMA scan images from my portal as well as share these images with other doctors. As far as the physical things like the slides, etc they may have to be requested by a medical professional like for a 2nd opinion, etc. But they have to be returned to original place that did the test.

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Profile picture for mjp0512 @mjp0512

@darrenh05
I would think anyone in a 2nd opinion position should have no trouble getting them. I have little patience for crap like this.

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@mjp0512
I agree !
The "service" was payed for by patient and insurance ( for examination and making report) , so how is it now hospital's property ? On the other hand, we came a long way since 1980"s - one could not even SEE one's report (like CT or bone scan ) - we could only "hear" what our doctor tells us. I always made a big deal about that and on principal went above and beyond to see original and full report made by radiologist himself. I even payed extra fee if needed. Some things are just beyond any rational explanation.

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You are entitled by LAW to receive any and all test reports, treatment and progress notes, etc. that any health care provider has on you. They CANNOT deny you that information. If they try...get a lawyer, and/or have your primary physician provide you with copies. Every last thing done to you sees reports flow back to your primary care physician. It becomes part of your patient chart to which you are entitled to copies.

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@readandlearn What does not having a medical degree have to do with obtaining "your" personal health records? If someone gets their medical records how will they self-diagnosis and treat themselves? With prostate cancer for example how would they treat, if AI tells them options are RP, RO, hormones, etc. How would someone get these treatments without consulting a doctor? Actually I could see how having access to your records could help save your life, one example would be if a doctor missed getting the results from a test you had and you remind them of it and it changes the course of your treatment. With all the doctors involved when you have a serious illness a lot can be missed and this is why I believe you need to have as much knowledge including your records, test results, etc to make sure nothing is missed. Just my opinion

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Profile picture for rlpostrp @rlpostrp

You are entitled by LAW to receive any and all test reports, treatment and progress notes, etc. that any health care provider has on you. They CANNOT deny you that information. If they try...get a lawyer, and/or have your primary physician provide you with copies. Every last thing done to you sees reports flow back to your primary care physician. It becomes part of your patient chart to which you are entitled to copies.

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@rlpostrp
"You are entitled by LAW to receive any and all test reports, treatment and progress notes, etc. that any health care provider has on you"

He is asking for the physical slides themselves. That is not so clear.

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Profile picture for daveys @daveys

@rlpostrp
"You are entitled by LAW to receive any and all test reports, treatment and progress notes, etc. that any health care provider has on you"

He is asking for the physical slides themselves. That is not so clear.

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@daveys - In his OP, he is asking for the slide image files, not the slides themselves. Additionally, he's asking for text based or Samtools package files, none of which are slides or organic samples. They are merely data or data compression files. No reason these should not be available.

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Profile picture for daveys @daveys

@rlpostrp
"You are entitled by LAW to receive any and all test reports, treatment and progress notes, etc. that any health care provider has on you"

He is asking for the physical slides themselves. That is not so clear.

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@daveys
He does not have to have physical slides - they can provide digitalized scans on CD or they can send those files to him.

Even if he wants physical ones he should be able to get them. He might need to sign bunch of papers and perhaps some legal documents that shield hospital from any liability if slides do get damaged or lost, but there should be no ban or releasing them.

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