How do you create a portable complex document

Software
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How do you create a portable complex document?

I went to see a pain management Doctor today. I provided several 20 page printouts of information that I thought would be helpful for him to treat me.

It quickly became clear that he needed additional information to be able to come up with a plan to minimize my pain.

I have the information but it is spread out among multiple DVDs, emails and documents in iCloud.

He asked to see the imaging that was done before and after the 4 surgeries, the Operation Reports, as well as the nerve injections and nerve ablations that have been performed.

I would like to create a Microsoft Word document that has a table of contents that has internal document links to each the procedures that I have had.

Once you get to the procedure I would like to have links to the information about that procedure. Those links might include links to actual MRI imaging that you get on a DVD at the end of your appointment. I could copy the DVD information into a container (iCloud Drive folder, Dropbox or thumb drive?). I I’m not aware of a way to insert the DVD information with the viewer into the actual Word document.

The DVD that you were given as you leave the imaging site contains the viewer for the images that were taken. I’m hoping that I can just link to the autoINF.Bat file that is on the DVD and have it launched the viewer that is pointed to the right side of images.

The problem that I’m trying to solve is how to make it portable so that I could put it in iCloud or I could put it on a DVD or I could put it on a thumb drive.

How do I create the hyperlink so that the document can find the information no matter what device it is on.

Could I put everything in the same folder and then just have the hyperlink use (dot forward slash) ./ which I believe tells it to look in the current folder.

Once I created on my Mac I would like to put a copy on a thumb drive, a copy on Dropbox add a copy on a public folder in iCloud.

I am assuming that the doctor’s office would have a PDF viewer.

Any suggestions on how to ensure portability. Doctors will probably be viewing it on a Windows PC.

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PDF is almost certainly the way to go for simplicity. There are still barbs that can catch you as the different versions of PDF are sometimes a problem if you use the latest one (assuming you have a choice). I would think that including everything… text, (internal) links, and pictures in the one document (pictures in appendices seems sensible) then it should be fairly compatible.

Also consider when exporting (again, if you have control) specifying downsizing of images. Your MRI images may be enormous, so downsampling (say to 300ppi) on export would make sense. Unless there is very fine detail to be seen.

One suggestion… make a very simple example… one page of text, a couple of links, a couple of pictures… and export that and send it to your doctor. See if they can read and navigate OK. Then you’re set for the main exercise.

Best of luck in navigating this, as it is clearly a very important task!

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Just a quick idea, use a relational database to set up your information. You could use Airtable which is a relatively easy to use online database and give the Doctor permission to access it online. I haven’t used Airtable and don’t know if this can be done with the free version.

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This is a very interesting post. I have to send a lot of paperwork to lawyers. We use the cloud, box.com. We scan everything into a PDF, then we break it down how we want so the lawyers can understand it better. For example everything kinda becomes its own folder…Apple tree folder, pitcher folder, pizza folder. Etc. then we share the folder, and usually put everything on a usb. we do this with paperwork and videos/photos. The lawyers also have their own Dropbox system we can drop files in if needed, but it’s easier if we send them everything from our end.

Not sure how you would handle the DVDs, maybe there is a lawyer or doctor in this chat that can break it down better.

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This question has three parts. First, how do I assemble information that is scattered across multiple formats? I think you will end up from this forum with a consensus that DevonThink is your best friend for this goal. Second, how do I create a portable document (with internal and external reference links) to represent selected information from segments of this assembled information? I suggest that creating a markdown file is your best option for the raw format, followed by generating Web pages for distribution, followed by generating a PDF file for archival records. Finally, what hardware format should I use to distribute the information? I would purchase an assembly of USB sticks of modest size and store everything needed as a self-contained folder. I would not distribute private, personal information on a cloud of any type.

–
JJW

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Very interesting question and a question that should have a more obvious answer in 2024. It’s an interesting case where the options are digitisation (folder full of PDFs) vs what some refer to as digitalisation (database or website, natively digital). I think I’d go with a folder full of PDFs. For video I’d upload to some cloud service you were comfortable with and insert a PDF page with just the clickable link to video at the appropriate place in your document(s).

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I do this a lot for passing science and report stuff to designers etc. it’s probably not the shiniest solution, but I do it largely the same way people did it 20 years ago:

  • put all the files in one folder (that can have subfolders)
  • meticulous naming of files and folders is essential (I tend to number them myself as well as use proper titles so that they’re in the order I need the other person to access them)
  • create a reference file that explains what all the files are, and link to each file (this is ultimately PDF, but it doesn’t matter what app you use to create it and Word would be fine)

That’s it!

I work in a Google workspace so for me this happens in GDrive. Each file has its own URL so linking to individual files in the reference document is easy. There’s no reason why you couldn’t zip a file though for sending over email, or use a different cloud-sharing option.

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If you are familiar with Obsidian, an easy way to do this is to create a new vault with all the required documents and media. Then, use the HTML Webpage Export plugin to export the whole vault as a series of HTML documents within a single folder. When the files are opened, they render as a web version of the vault. Of course, it can be copied anywhere and opened using any browser. You can also export for a web server.

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As a Mac user - the answer is to create an iCloud link to an HTML page that links to all the information sources.

As a pain physician myself - trust me that your doc does not want you to do that during an outpatient office visit. Put the information on one printed page and hand it to the doc - that’s it.

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I agree, otherwise it sounds like the OP is going to bury his physician with information that likely won’t be consulted.

Apparently the OP does not have an Electronic Medical Record? But even so, I understand doctors have access to what they need of their patients’ medical records even if (horrors!) the records must be accessed on paper.

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It may be possible for your current physician to get access to the imaging studies directly from the providers who performed them, provided you grant permission for their release. (Ditto for the reports, although these are more straightforward for you to provide directly, of course.)

Keep in mind that US medical offices are generally pretty locked down when it comes to tech. For very good security and regulatory reasons medical practices may prohibit staff from downloading a patient’s files from third party cloud providers, especially one with an executable file in it. Ditto for a thumb drive. (I learned this the hard way.) A Word document with an embedded image viewer might blow the place up.

Your own copy of your master document could be in Word if that’s what you’d like to work with. I strongly recommend that anything you distribute be in a PDF, however.

TLDR: Putting together a comprehensive document (or document repository) that links all of the relevant information together in a logical fashion is a very good idea. It may not be possible to hand it over to a medical office as an integrated whole, but once YOU have it all on one place, it will be straightforward to hand off the parts as needed.

An aside: all of my family’s healthcare providers use Epic’s MyChart platform. It has made managing our healthcare records and the like considerably more straightforward. It proved especially helpful when we were managing the care of our aging relatives, who simply didn’t have the resources to keep track of it all. I recommend giving it a try if it’s available to you. The upside: no more imaging DVDs.

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The problem is that DVDs actually have data as well a viewer app that allow the Dr to see different views.

I don’t think they have in any of the web browsers that would be able to run that viewer.

If I just put everything in a zip file the Dr could download but once the Dr expands it in a folder of their choosing how do I make sure the links are still good.

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But how do you arrange to see the imaging that has been previously done?

Do you just look at the reports or do you actually like to look at the images from the MRI via the viewer on the DVD?

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It depends on the nature of the visit.

Surgeons and others who perform invasive procedures generally want to view imaging themselves. They usually have credentials to login to the web portal for local medical centers and can access the imaging views that way.

In most other cases it is sufficient for your doctors to simply view the narrative report of the radiologist who read the study.

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This, or whatever completing product your provider uses is the answer. In my limited experience, these services actually allow the patient to upload their own documents. This is how you make documents available, not via your own cloud service. But again, for the reasons stated by others, assume PDF format only for written and still image records.

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I went through a quite harrowing situation a couple of years ago that ultimately led me to consulting with 5 different surgeons, with 4 of the 5 insisting I needed surgery asap, but all having very different recommendations on the best type of surgery. I had multiple MRIs, CT scan, and X-rays done. For all imaging, I simply insisted that the imaging results be provided directly to me on DVD before I woudl leave the imaging center. Things are changing now and towards the last couple of visits I got some groans and warnings that, “We won’t be providing DVDs soon as everything is in your patient portal” but that clearly is not good if getting multiple opinions. With the DVDs in hand I then brought them and provided upon check-in to each surgeon. One, a world-renowned surgeon in another state, had a very nice portal for this very purpose - you popped in your DVD into your computer and it scanned and uploaded to their portal as a “study” linked to me. Pretty snazzy from a technical standpoint, I thought : )

As others have said, the security is one showstopper to you trying to build something that will be useful, as doctors don’t have the ability to just accept your USB key. You could try messaging a PDF through their portal as they usually do accept attachments, but I doubt they’re going to be able to look at links etc. in it. Another showstopper I know from experience - the staff at these doctors offices are not only often pretty rude/unmotivated but also very much NOT tech-savvy.

Related note - you can use the free OsiriX Lite app to access and view the imaging on the DVD yourself. You could then view it and screenshot and include in the PDF. But again, that’s not really a suitable, professional, appropriate method for a doctor to look at imaging results. Best of luck to you!

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Not sure that’s what you’re looking for, but I came across this and immediately remembered your post: MdRx