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I visualize data buried in non-proprietary healthcare databases
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Selling pain repackaged as freedom...

11/19/2018

 
Healthcare is a system many of us seek to change. But what might actually be happening? We are slowly being changed by the system. What if we succeeded in improving health across our nation? Hospitals would close, economies would shift, and profits would diminish.

What happens if we reimagine patent law and large profitable pharmaceutical companies are challenged to introduce generic and more affordable drugs onto the market much sooner?

Introducing a little transparency into the actual costs borne by industry would allow better solutions to be developed and imagined. We shouldn't ignore the research & development in academic settings and how that is funded by tax-payer dollars. No. Not in every case but we aren't allowed to fill silences with perturbations of a system where so few profit at the expense of all of us.

​What if we stop believing that innovation is fueled by economic excess instead of economies of sustainability, technology, and viability?

Have you ever heard an industry client question the profits they are making on their blockbuster drugs or only lamenting that they deserve the windfall because of other pipelines that were silently halted?
​
And I basically became very interested in the silences, what we were not allowed to talk about or what we, just by custom, didn’t talk about when we came together to talk about making the world better.

So the Aspen consensus was: You can tell the rich and powerful in our age to do more good, but you can never tell them to do less harm. You can tell them to give more, but you can’t tell them to take less. You can tell them to share the spoils of extreme capitalism, but you can’t tell them to renovate capitalism.
--Anand Giridharadas
Read the latest headlines about Michael Bloomberg's ginormous investment in the Johns Hopkins? Anand also asks why not question a system where billionaires have so much excess to donate? 
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Working at the level of systems means that problem components are in interdependent and constantly changing relationships. Linear approaches that address one component or factor at a time are inadequate in addressing dynamic conditions.

Stakeholders show a variety of motives and behaviors for engaging with systems. Designers must reconcile competing goals and performance expectations through participatory methods that value stakeholder input and ongoing feedback from the system.

And issues of sustainability, technological feasibility, and economic viability are crucial to making design solutions work over time.--Trend I: Complex Problems--Meredith Davis AIGA
I am working on a data literacy project where I am investigating the opioid crisis integrating data many have not considered. The question posed by Anand again is chilling and speaks to the larger driver of a crisis looking for linear solutions--that won't work.
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Why write words into conversations if you are not willing to dig deeper and illuminate contradictions?

​ I think what the investigation has left me with is thinking about, even as a writer, how do I make sure that I am using my power, however limited it is, to interrogate systems and ask the questions you’re not supposed to be asking, instead of doing the kind of journalism or thinking or speaking that merely props up power. 

But it also shows up for me every day in thinking about, am I using my voice to say inconvenient things that might cause me to lose friends or social capital, to put it in those market terms, but that are part of maybe pushing us, in some small way, to where we need to get as a society?--On Being Krista Tippett in conversation with Anand Giridharadas

Working as a consultant I was once jokingly accused of heckling the very client that hired me to provide expertise in immuno-oncology. I didn't see it that way but I was never brought in "live" again. The company, in my opinion, had made a bold choice in pre-clinical formulation regarding the FC region that triggers cell-mediated cytotoxic effector functions--in particular antibody dependent cellular cytotoxicity (ADCC). 

I requested the pre-clinical data so I could review and see if there was perhaps a unique aspect of this particular molecule we could highlight to help differentiate a "not first to market" investigational drug. When I received the document, the section I requested was not included. I found this interesting but was dismissed and never saw the information. After a few conversations that included "mansplaining" from an apparent team Google search I could see the consensus irrevocably leaning toward the status quo--I dropped it but still recall how little we are willing to probe when trying to secure the next round of business. 
All around, us the winners in our highly inequitable status quo declare themselves partisan of change. They know the problem, and they want to be part of the solution. Actually, they want to lead the search for solutions. They believe that their solutions deserve to be at the forefront of social change. They may join or support movements initiated by ordinary people looking to fix aspects of their society. More often, though, these elites start initiatives of their own, taking on social change as though it were just another stock in their portfolio or corporation to restructure. Because they are in charge of these attempts at social change, the attempts naturally reflect their biases.

The initiatives mostly aren't democratic, nor do they reflect collective problem-solving or universal solutions. Rather, They favor the use of the private sector, and its charitable spoils, the market way of looking at things, and the bypassing of government. They reflect a highly influential view that the winners of an unjust status quo--and the tools and mentalities and values that helped them win--are the secret to redressing the injustices. Those at greater risk of being resented in an age of inequality are thereby recast as our saviors from an age of inequality.--Winners Take All: the elite charade of changing the world--Anand Giridharadas




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Try and find the book. I think it is an important discussion that needs to happen.

I agree that most of us are decent people trying to prop up an indecent system.

But whom are we serving when economics of billion dollar revenues are valued instead of improved patient outcomes, when investments are made in direct to consumer advertising, lobbyists, and the latest M&A are broadcast as successes?

There are harms associated with doing good. Why aren't we discussing them on a broader platform? Why are so many of us in pain? Is the solution a "pill" or upstream investments to reduce social vulnerabilities? 

​What are we actually being sold?

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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