20 ms·

Author here, If anyone has any questions about dealing with the medical system or about clinical trials ask away!

herman5 9y ago
What was the actual process of acquiring your entire medical record? My understanding was that this information can be highly fragmented depending on the number of different places one has received medical treatment.
- blaurenceclark 9y ago
  110% true, and I can give multiple examples of this 1) Fortunately I went to just one provider for all my treatment and they make the entire EMR extract available for patient download through their website (Sutter Health in CA) props to them for doing a great job at this 2) When dealing with issues w/ other family members and friends we've often only been able to get very minimal data extracts and had to actually fax in requests to get the full medical record sent to us on a CD weeks later. 3) Services are now popping up to do that for you, picnichealth, patientbank, etc. and they should be able to get your full detailed record to view for a cost instead of doing it yourself
kiddico 9y ago
I'm guessing you're the author then? I'm just making my way out of a course called Health Informatics. Most of what we've done is look at HIPAA, and the standards that make sending patient info from one hospital to another possible. In general the whole situation in a mess. I understand the purpose of not sharing identifiable data with the world, stops people from targeting people because of their conditions. But we have a wealth of information that's been made effectively useless from a research perspective. this isn't much of a question, just wanted to express my frustration with the whole thing as well. that said I've got a lot of respect for your mission, and the balls required to publish your otherwise HIPAA protected info.
- blaurenceclark 9y ago
  Thanks a ton for the support!! If you ever wanna connect more on it email me!
- pc86 9y ago
  > I'm guessing you're the author then? The comment literally starts with "Author here"
  - blaurenceclark 9y ago
    I added that after he asked that question, we'll give him a pass :)
troyastorino 9y ago
Hey Brian, it's really great that you're doing this :) If there's more to your medical history that you want to track down, or you want to get your data transformed into a structured format, you should reach out to us at PicnicHealth and we'll see what we can do.
- blaurenceclark 9y ago
  I've been in touch with Noga before we def will! :)
JoshMandel 9y ago
Thanks for this! Have you considered sharing DICOM files, too (i.e. the actual images from your MRI, in addition to the reports)? If so, what went into the decision not to include these?
- blaurenceclark 9y ago
  I'll add those in, just didn't download them yet haha
  - jmhmd 9y ago
    If you're interested in loading the DICOM files into a real viewer, you can try http://www.pacsbin.com http://www.pacsbin.com, a project I've been working on to keep a personal store of medical images and easily share them on the web. Everything you upload is be auto-anonymized, and you can view the images the same way a radiologist or other physician might.
    - blaurenceclark 9y ago
      Ahh great work! Will def check it

What was the actual process of acquiring your entire medical record? My understanding was that this information can be highly fragmented depending on the number of different places one has received medical treatment.

blaurenceclark 9y ago
110% true, and I can give multiple examples of this 1) Fortunately I went to just one provider for all my treatment and they make the entire EMR extract available for patient download through their website (Sutter Health in CA) props to them for doing a great job at this 2) When dealing with issues w/ other family members and friends we've often only been able to get very minimal data extracts and had to actually fax in requests to get the full medical record sent to us on a CD weeks later. 3) Services are now popping up to do that for you, picnichealth, patientbank, etc. and they should be able to get your full detailed record to view for a cost instead of doing it yourself

kiddico 9y ago

I'm guessing you're the author then? I'm just making my way out of a course called Health Informatics. Most of what we've done is look at HIPAA, and the standards that make sending patient info from one hospital to another possible. In general the whole situation in a mess. I understand the purpose of not sharing identifiable data with the world, stops people from targeting people because of their conditions. But we have a wealth of information that's been made effectively useless from a research perspective. this isn't much of a question, just wanted to express my frustration with the whole thing as well. that said I've got a lot of respect for your mission, and the balls required to publish your otherwise HIPAA protected info.

blaurenceclark 9y ago
Thanks a ton for the support!! If you ever wanna connect more on it email me!
pc86 9y ago
> I'm guessing you're the author then? The comment literally starts with "Author here"
- blaurenceclark 9y ago
  I added that after he asked that question, we'll give him a pass :)

troyastorino 9y ago

Hey Brian, it's really great that you're doing this :) If there's more to your medical history that you want to track down, or you want to get your data transformed into a structured format, you should reach out to us at PicnicHealth and we'll see what we can do.

blaurenceclark 9y ago
I've been in touch with Noga before we def will! :)

JoshMandel 9y ago

Thanks for this! Have you considered sharing DICOM files, too (i.e. the actual images from your MRI, in addition to the reports)? If so, what went into the decision not to include these?

blaurenceclark 9y ago
I'll add those in, just didn't download them yet haha
- jmhmd 9y ago
  If you're interested in loading the DICOM files into a real viewer, you can try http://www.pacsbin.com http://www.pacsbin.com, a project I've been working on to keep a personal store of medical images and easily share them on the web. Everything you upload is be auto-anonymized, and you can view the images the same way a radiologist or other physician might.
  - blaurenceclark 9y ago
    Ahh great work! Will def check it