The Rationing Of Medical Data


Last night I was scrolling through Twitter and catching up on some of the days news when I came across this:

Screen Shot 2016-03-29 at 9.51.12 AM

The above tweet was posted by Steve Sisko (@ShimCode) yesterday. While Steve can be opinionated at times I had to take pause.

I asked myself what does this really mean within the bounds of the healthcare industry? Most importantly, what does this mean to the people we serve, people that at times are patients?

My response was this:

Screen Shot 2016-03-29 at 9.51.33 AM

Historically easy and simple access to our own healthcare data has been complex, difficult, and somewhat held at ransom from us. Our ability to get copies of images, labs, pathology, medical notes and documentation, discharge notes, coding and billing, and pricing takes the help of an insider and their network to access it all.

Accessing and collecting our medical data isn’t something that happens in a matter of minutes or hours, it can take days, week, and even years to collect it all. At times it seems one needs a PhD in systems engineering to figure out who to call and what to ask in order to obtain our medical data. (ask an insider, we can help)

There are always good reasons why the barriers are in place from trying to keep our healthcare expenditures low, to ensuring the quality of the data, to our own privacy and protection via HIPAA.

Yet the internal truth is less altruistic.

“Thee who holds the data, holds the keys to the kingdom.”

Many healthcare organizations (insurance companies as well) have always thought of the data as part of their “Intellectual Property.” We have a special way of caring for people. Our processes have been built over time. We don’t want to share our secret sauce with our local competitors. Patients need to come back to us for their care.

The reality is many people don’t want to be part of your kingdom.

They do not want walls. They do not want barriers. They do not want a drawbridge, and they definitely do not want a moat filled with crocodiles. They do not want fragmentation in their care. They do not want inconsistency, lapse in judgement, or misdiagnosis due to lack of data accessibility. Or in this case, ransoming medical data.

Technology is not the barrier. The barrier resides in the monarchy of healthcare.

Thee who sets the data free wins in the connection economy. ~Cancergeek

While we want to sit and focus on the ransoming of data by hackers as evil (which it is an important topic we need to focus and address), we forget the rationing of data that the medical industrial complex has done for years.

Maybe that’s the point the dark web is trying to remind us….its less about the kingdom and more about the people?

As always you can feel free to email me at or follow me on Twitter @cancergeek


4 responses to “The Rationing Of Medical Data

  1. Ha! Opinionated? You bet Andy! I consider having an opinion, taking a stance and being willing to share that stance a valuable trait. I’m not one to go along for the sake of maintaining the status quo and being a politically correct drone. But I digress.

    I want to address various points of your post and think I will do that via a post of my own but I need to get some of the day job out of the way first. My primary comment is that I think you give health insurance companies too much credit for the types of data they have on their members. Health plans don’t originate images, labs, pathology, medical notes and documentation, discharge notes, coding and billing data; providers, labs and imaging centers do. And while I can’t speak for all health plans, the ones I’ve had before and the one I have now all provide detailed claims data via their portal or via a request process. So I’m not sure your implication that health plans are holding members/patients data hostage holds water.

    I’ll let you know when I have more on your post.

    • I welcome your thoughts as always. I specifically called out healthcare orgs…and the data insurance holds is at a value too….I’ve been part of many negotiations on pricing, claims denials, and guideline decisions…so there is a parallel. Look forward to your thoughts.


  2. I have to agree with Steve on this one. Seems like a massive false equivalency to compare the protection measures of HIPAA compliance that make (attempt at least) your data safer with that of ransomware which is created maliciously to lock you out. While I see where you are going with it, its the difference of a bank asking to see ID before giving you money from your account to make sure you’re not someone else vs someone stealing your identity and taking out $100K in loans in your name.

    While it would be nice if some of the data were faster to get to (can take weeks or months to get full medical records depending how many different hospitals/clinics/labs you have been to), and there is work to be done to make this better. I don’t think these are similar enough to make that comparison. You bring up a great issue that needs to be addressed, its just a bad analogy in my opinion.

    I do have one follow-up question to the rest of the post that mostly agree with:

    “The barrier resides in the monarchy of healthcare.” who is the monarch of healthcare as you see it?

    one of the big barriers I see is the fragmentation of healthcare, between different providers, insurers, and even the different EMR’s where this data is routinely stored. While I might only be interested in one or two of the data sets you gave examples of, if I was interested in all of it, I would have to contact like 6 different separate entities (corporations, government, hospitals, clinics, insurers, pharmanet (or your countries pharmaceutical record keeper)).

    I would almost say the issue with the man-made barriers you describe is due to the aristocracy of healthcare, if anything… but, of course, I might have missed your meaning (which is why I asked for clarification).

  3. Pingback: Big Data in Oncology Spotlight - Innovation Partners

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