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data & donuts

"Maybe stories are just data with a soul." -- Brene Brown

“No one ever made a decision because of a number. They need a story.”--Dan Kahneman

8/7/2018

 
I am heading to NYC--again. If you run a small business, there are miles of inspiration along the route. Charlottesville, VA (Trader Joe's to stock up fridge), Washington DC (I am a member of National Press Club), miles run along West Side Highway and over the Brooklyn Bridge, and time with family.

Lots of data in August. My mom turns 80, my marriage turns 25, and Edie (my grand niece) turns 1. There are also numbers although balanced by positives--that translate to disappointment. Projects delayed, others not awarded--a short list for a fellowship that didn't pan out, press access not granted--all fodder for a small business entity.

The salt in the proverbial wound is most liberally applied when we notice the emperor is naked or at least scantily clad. The data everyone wants is the winning algorithm. How much money did a pharmaceutical company generate contrasted with R&D spend and oh look--a productive and "Innovative" pipeline of drugs moves you up the list of success. But does it?
​
It seems to only be a "free market" on the patient end. Behind closed doors industry executives talk about increasing/decreasing market share. That is finance speak for how many of us will be sick and in need of their drug, device, or services. Hint: they are only chuffed when discussing expanding market share.

You pay what you pay because golly we all work so hard and R&D is such a risky proposition. This is the very definition of coercion. What if we didn't combine the marginal cost of manufacturing the next pill with the "innovation" of R&D that developed it in the first place? Click here for article on Nimble Solutions for Big Data. What if march in rights were really a thing?

Those of us in the health policy realm recall how the US Bayh-Dole Act (1980) refers to public interest as it empowers US government with 'march-in' rights that enable the government to, on behalf of the public, effect corrective action in the event of non-use, misuse or abuse of intellectual property rights.

​However, the US government has never exercised these rights despite a number of instances where the right to health, and more specifically access to patented medicines was compromised. 


“action is necessary to alleviate health or safety needs which are not reasonably satisfied,” 35 U.S.C. § 203(a)(2), or where the benefits of the invention are not being made “available to the public on reasonable terms,” 35 U.S.C. § 201(f).--Bayh-Dole
A report, Overpatented, Overpriced: How Excessive Pharmaceutical Patenting is Extending Monopolies and Driving up Drug Prices is a great summary document for what many of us writing in the space are all too familiar.
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There are many databases that capture hints of the extent many pharmaceutical companies will obstruct competition in order to retain profits and commercial advantage. I rely on Questel or directly searching the patent office but you need to know a bit about the process. You can also look at Abbreviated New Drug Applications (ANDA) and Reference Listed Drug (RLD) data reported by FDA here.
The point in all this is about the data. Isn't it always? The dilemma, as put so succinctly by Daniel Kahneman, is the story around the data.

​If we are only telling part of the story for example what drives profits in healthcare, why so many patients experience poor outcomes, or why we continue to build a framework and system of disease instead of health--what sorts of decisions can we make?

​Ready to discuss your data questions? Answer a few questions here or send a message here and we will be in touch...

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  • Data & Donuts (thinky thoughts)
  • COLLABORATor
  • Data talks, people mumble
  • Cancer: The Brand
  • Time to make the donuts...
  • donuts (quick nibbles)
  • Tools for writers and soon-to-be writers
  • datamonger.health
  • The "How" of Data Fluency