I have been spending unsupervised time with my thoughts. It sounds noble but I assure you, it is completely involuntary. As far as sleep goes if you know me you know that around 9 p.m. I am already heading upstairs to begin my post-menopausal moon salutations.
I do an abysmally short--some may say neglectful--skin care routine of washing my face. I can’t moisturize at night because apparently my face dreams it is a teenager and invites acne to the party. Next, there is a truncated routine of stretches and a 1-minute plank. A nice way to close out an active day of running and butt sitting at the computer.
Against all recommendation for a good night’s sleep, I turn on the news for a quick summary of the day’s events that lately have bordered on dystopian horror. All is well as I doze off while planning the next day--until anywhere between 2:30 and 3:30. Too early to venture downstairs to my office, even if the work is piled high.
Birdie, our 8 month old Plott hound, is being trained to sleep through the night and is way to enthusiastic for my company. My husband would not be happy if she began whistling for us each morning around 3 a.m. So I decide to meditate. In the absence of my irregularly regular pool swim I have lapsed and rarely do anything calming. I begin in earnest.
Focusing on breath I have always broken the cycle into 25 breath cycles hoping that by the 24th I am drifting back to sleep. Dear reader this has never been the case but hope springs eternal. The surprising discovery is my epic failure. Not only do I rarely reach 25 slow deliberate breaths but I often forget what I was even doing. I know your thoughts are naturally going to drift. Mindfulness is the whole point but my friend assures me the natural ebb and flow of your thoughts brings awareness and calmness. Think of it like waiting for a bus. You sit and watch the traffic stream past. Unfortunately in my mediation practice not only am I hopping on random buses, I rarely have a return ticket.
This is interesting to me. If you know there is a pattern or a glitch in the universe you are able to take measures for improvement. My friend Kathyann recommended a book that I have on my nightstand. If you click the image to purchase I get a few nickels but that isn’t the point. My inability to focus on inhaling and exhaling could be the ticket to a calmer mind, a better recovery, and more presence.
I wanted to share this story because many of us are dealing with stressful life events. We are fortunate to be helping plan our son’s wedding, I have a book deal, my youngest is beginning his second college semester safely down the hall, knock on wood we are healthy, employed, happy, and hopeful.
But that is the thing about stress. If you don’t own your own breath, you will not be able to own your own peace.
The first example that comes to mind when thinking about reductionism in brain science would be the Punnett square. Those of us with experience studying genetics understand that this isn’t how heredity works from a biologic perspective but this simplistic rendering is helpful in understanding Mendel’s theories of inheritance.
This matters upstream from data visualization. We are taught the importance of pre-attentive attributes but not the cautionary tale of how they can unduly influence our perception. These altered perceptions may be conscious or unconscious but as our brains attempt to simplify what we are viewing it is also often adding information that is not actually present--it can distort messages.
This can happen for many reasons but if we recall that visual information is processed on two different pathways, it makes a little more sense. The primary visual cortex processes information that answers the “what” we are looking at toward the bottom of the brain (inferior pathway) while information that responds to “where” is diverted to the top of the brain (superior pathway). Inferior pathway detects faces, shapes, colors, identity, motion--superior pathway is concerned with depth and spatial information. This describes the interplay between pre-attentive and attentive attributes.
Low-level processing occurs in the retina and detects images, intermediate-level processing distinguishes which surfaces and boundaries belong to specific objects, and high level processing integrates information--Reductionism in art and brain science, Eric R. Kandel
When we are observing works of art our brain associates memories of other artistic works in addition to past life experiences. I argue this happens with charts and graphics as well.
Why Visual Analytics? Pre-attentive attributes
...to be continued
I simply don’t enjoy the remote bits as much as I thought I would. Following a series of Zoomy webinar formats (for scheduled speaking events) I felt hollow. Although I request attendees be allowed to raise hands and leave their video and mics live--not one host has acquiesced. Interactivity is paramount to engaging with your data or your data questions no?
Maybe you don’t realize how weird it is but basically you are talking to your own face for 45 minutes to an hour. Narrative stories need an audience--not a theoretical invisible one--a curious and engaged group lobbing questions over the fence. Especially when topics hover around racial bias or underserved populations.
It seems only yesterday I was toying with ideas in search of meaningful dialogue. Finding true merit in a deep river was one such post but there are many. Before COVID I was teaching the data curious how to use CENSUS data to ask meaningful questions around poverty--not the almost 60 year old definition, but actual poverty. I am currently using the blog and newsletter as a data diary. It allows me to get a few ideas out in the world to re-examine once I need to create several talks a month. Maybe I should think of it was an idea library...
I rely on IPUMS Current Population Survey data for granularity around food insecurity. These variables are the “grammar” you need to create a powerful story.
I am often asked to talk about diversity, under-served populations, and bias in healthcare algorithms. Digital racism although well meaning, ignores the system level problem. While we are frantically shining flashlights in the darkness of our ignorance--there is a menacing commonality to all of the chest pounding and activism.
We were founded by racism. Plain and simple. The sooner we all get onboard the sooner we can create policy to address these social constructs that marginalize and limit opportunities for all of our citizens. Did COVID really create a racial divide in education, healthcare, and economies? Or did it reveal what has always been there? Providing meals, safety, upward mobility, socialization, an education--a daunting task for the nation’s poor.
Think of the evictions. How many of you have heard of the McKinney-Vento Homeless Assistance Act? It is the primary legislations responsible for educating at-risk children and those facing or experiencing homelessness. Yes, it is easier to blame floundering governors and mayors for keeping schools closed, then opened, and then closed again.
We need to revisit what is contributing to homelessness--A wave of evictions is on the horizon. What impact could they have on kids' education?But I suggest the story is around how “access” is being defined and how already cash-strapped communities are intended to fund additional support.
And when we discuss remote learning there is historical precedence and research we need to consume. Where Platform Capitalism and Racial Capitalism Meet: The Sociology of Race and Racism in the Digital Society
As the state legitimizes the use of digital and algorithmic decision making, it also creates new data worlds (Gray 2018; Milan and van der Velden 2016) to which few sociologists have access. The inaccessibility of these data is part of their value to state and capital interests. Private data worlds where decision making can be veiled from democratic inquiry fuel economic and political commitment to more datafication. This brings about more secrecy.--Tressie McMillan Cottom, Where Platform Capitalism and Racial Capitalism Meet: The Sociology of Race and Racism in the Digital Society
The Gini index below shows how black populations experience higher rates of inequality. Yes, there is a little more to it but you can see how developing skills around data sourcing and formulating meaningful questions can add much to curating empathy and insights.
I teach workshops examining the data layers contributing to poverty. This doesn’t happen in a vacuum. I read many books to influence where to look for data but I listen to podcasts like Code Switch. A recent podcast reminded me that when voting data was reported based on younger cohorts and racial categories--it wasn’t real.
We don’t have the data yet and it could be a minute before we distill the data to that level.
Five quick lessons for improving your data literacy
"If I had an hour to solve a problem and my life depended on the solution, I would use the first 55 minutes determining the proper question to ask, for once I know the proper question, I could solve the problem in less than five minutes."
Data literacy is a popular buzz word lately. Often cited as an organizational goal or an individual professional metric but you might be surprised how blurry the end game might be. How do you define success? When are you considered “literate”? And why are courses delivered in soothing dulcimer tones? Where are the challenges and limits? The solutions are not marketable and should be evolving with the complexity of our data questions.
Morgan Freeman wasn’t necessarily referring to data in the opening quote (in the title) but you can see why I made the leap. Better data, better questions, better insights. We need to curate empathy not the next gizmo for sale.
In my opinion, this is mission critical. You can design, sell, even give-away the alleged “secret sauce” but make no mistake--this is more than what chart to use to display your data or how best to create a visualization.
The decisions you make upstream to tool selection are more important than the tool itself. We don’t have the luxury of mistaking an ideology for an effective solution to complex problems. Tableau is trying to make introductions to data literacy that albeit a little late to the party--might help guide us all in the right direction.
My main criticism is that all roads to literacy appear to be paved with Tableau products but having said that--Tableau Public is free and can certainly launch you on a journey of data discovery. When I teach data literacy--especially since my audience is typically underserved populations or adult learners--I share free resources along with the paid alternatives.
Because if literacy is not equitable, what is the point?
Data literacy requires actionable insights and workflows. Although many of us work with large datasets (especially in healthcare) I spend much of my time in Census data files.
Here are the buckets from the Tableau data literacy initiative. The next few posts will explore how these apply to an actual data set.
For example, when I want to examine poverty or racial inequity I know there is a variable in the Census data that will look at vacancy rates. This is exploratory data analysis but I need to find the data.
I skipped ahead simply to show you how I might do a little front end research to figure out where I might begin to find meaningful variables. I remember a project in Los Angeles where there was an association made between poverty, race/ethnicity, and percentage of multiple family units.
This data is also captured by Federal Government and economic forecasters to gauge the economic environment.
When working with Census data you need to know which tables contain the data you hope to explore. I know that B25004 has the data. I have spent more time with the 2018 data but we do have access to 2019 although with limited geographical files so I rely on acs5 for 5-year data in real life but for purposes of this quick look here is what I am sharing.
Briefly, I share how to find the codes for your state or county level data and how you bring the data into Colab for a rapid Python analysis. From my less than 10 minute query above I know that I might be interested in Block group 4, census tract 126.01 to explore vacancy rates and other attributes in the area.
A quick look in ArcGIS allows me to explore poverty levels in my local county to see if there are any trends. We notice that purple is displaying higher percentages of the population whose income in the past 12 months is below the poverty level. The next step for me would be to redefine poverty as the definitions we work with in government settings were articulated in 1963 and include income and only food expenses. It is out of date but we are able to define a wide variety of other variables better suited to identify contributions to inequity.
Think about overlaying the visualization below and see if you see patterns between vacancy rates in communities and where the poverty levels are highest. The dataset I normally work with has 62 variables all culled from census data. More to come...
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Click below to see a story map created in ArcGIS...
On the edge of what we know, in contact with the oceans of the unknown, shines the mystery and the beauty of the world--Carlo Rovelli
This weather. It seems like a whisper of possibility--of something shinier just around the corner. I queued up a playlist of podcasts covering ultra running, culture, data science, economics, medicine, and literature. You would think these are disparate topics united only by an individual runner’s eclectic preferences but you would be wrong. Edges are where I get my best ideas. Think of your interests. The books you read, the ones you don’t--the music you like or hate. I use these early morning runs to clear my mind--and if it is a good morning, I might learn something new.
After the Fact is a podcast produced by Pew Charitable Trust. Conversations on Science: What Makes Science, Well Science is a brilliant series. Here is the transcript. Theoretical physicist and writer, Carlo Rovelli reminds us that we need to gather many lenses to make sense of our world.
I discover most books from author interviews on podcasts. Seven Brief Lessons on Physics* is the latest. *I get a few shiny nickels if you order the book from the link--full disclosure--but cost to you is the same. It is about as far into advertising as I can lean. It makes sense to me. Its like you are tossing a few nickels out of Jeff Bezo’s pocket into mine. Thanks!
This book is great for many reasons but my favorite is why Carlo decided to write it. I remember college physics, it was many things but brief it was not. He says he doesn’t like details. For example, we can be interested in butterflies for example--without reading a 700 page book on everything there is to know. Maybe some things you are willing to absorb at face value. He shares the beauty of physics without having us calculate which train arrives at the station first.
Something that has stuck with me is how he defines science or better yet provides context.
"Science is a tool that we have. And we should not mistake a tool with our ideology or our objective."
Boom. This reminded me of professionals teaching data skills or data visualization. I lead my workshops with a bit of context. I approach data problems as a tool agnostic professional. Yes, I spend a lot of time working with Tableau but the more tools you have--not restrained by ideology--the better you will navigate the alluvial framework of our new remote work lives. Think about Python, R, ArcGIS, and SQL.
I am finishing up this post listening and watching the Tableau Conference-ish, reimagined for virtual hijinks, knowledge, and networking. I was at Tableau conference in 2016 when election results were announced and I attended the Tableau conference held at Mandalay Bay days after the massacre at an outdoor crowd of 22,000 attending the Route 91 Harvest Festival. Conference has been a time post of the last 7 years.
Here we are again, now ravaged by a pandemic and struggling with racial inequity. I hope we can look to data. I hope we can ask better questions. I would like to see more folks at the table. Many of us have been standing at this table for a long time.
I hope we are ready to add more chairs.
A table, a chair, a bowl of fruit and a violin; what else does a man need to be happy—Albert Einstein
More and more, journalism seems to have hopped out of Truth’s pocket and crept into another--Henry Rollins
There are things I simply can’t explain--my fascination with Henry Rollins being one of them. Or perhaps my persistent curiosity to find the original “thing”.
Let me explain. When I hear or read a story I want to know where it was seeded.
Who created the idea that germinated into this shiny product I am consuming.
Nature has it wired. Cancer, plague, viruses, parasites and other grotesque, microscopic killers are there to thin the herd. Of course we fight back. This being the case — along with other factors such as our inability to always play well with others — not everyone is going to have a long, healthy life.
The raw truth is what I crave. Perhaps I never get there but the telling is in the journey. It might be why I needed to create this platform. A place where I can toss up some ideas or better yet--run them up a flag pole and see if anyone salutes.
Maybe that’s why I retired from medical writing. Medical writing is about telling a narrowly defined truth based on limited data and polished to a shiny hue illuminated with profit and false narratives. Okay. It sounds a bit harsh but if we poke a little deeper there is something crumbled and stale in the pocket of truth. We aren’t talking about health care. We are talking about disease care.
Conversations about health should address structural determinants of health. How do we alleviate the unequal distribution of power and resources in our communities? Instead we wring our hands and lose the focus. We label the buckshot and start dismantling the assault in a piecemeal manner. The best intentions are littered with discussions of race, gender expression, and class. Divide and conquer strategies might explain why we are still having the same conversations. If we address the cause instead of the symptoms, perhaps effective policy will follow.
Whether with respect to race, ethnicity, gender, class, or other markers of human difference, the prevailing American narrative often draws a sharp line between the United States' “past” and its “present,” with the 1960s and 1970s marking a crucial before-and-after moment in that narrative. This narrative asserts that until the 1950s, U.S. history was shaped by the impacts of past slavery, Indian removal, lack of rights for women, Jim Crow segregation, periods of nativist restrictions on immigration and waves of mass deportation of Hispanic immigrants, eugenics, the internment of Japanese Americans, the Chinese exclusion policies, the criminalization of “homosexual acts,” and more (Gee and Ford, 2011; Gee et al., 2009). White women and people of color were effectively barred from many occupations and could not vote, serve on juries, or run for office. People with disabilities suffered widespread discrimination, institutionalization, and social exclusion.--Communities in Action: Pathways to Health Equity
There is hard work to do when you want actionable answers. The history of our country is shameful, but it didn’t happen in a vacuum. Reading about James Madison we realize that although we celebrate him as a founder of our country, he also argued that white land-owning men were best suited to lead our nation or to have a vote in how our nation was to be led. They represented only 6% of the population at the signing of the founding documents.
It seems coincidental to have discovered a book that changed my thoughts and awareness on such a cellular level in a book shop on his former plantation. The Half Has Never Been Told: Slavery and the Making of American Capitalism by Edward E. Baptist.
This has been a meandering way of introducing The Atlantic Festival. Earlier this week the historical Atlantic Monthly hosted a virtual version of their lively festival.
Here is how they won. They won on the content of diverse conversations and inclusion.
First, it was free. Subscribers had a few extra sessions and the ability to network but the important discussions were available for everyone. That decision alone has made me a subscriber for life. Go to YouTube and hunt down the videos. You are welcome.
The journalists are the best in the world. I say that as a subscriber to Washington Post and The New York Times. It is our job, not just as colleagues but as readers to challenge and be informed. Not all journalism is created equal. I am haunted by a story by Barton Gellman.
Here is a link to the video.
The Interregnum comprises 79 days, carefully bounded by law. Among them are “the first Monday after the second Wednesday in December,” this year December 14, when the electors meet in all 50 states and the District of Columbia to cast their ballots for president; “the 3d day of January,” when the newly elected Congress is seated; and “the sixth day of January,” when the House and Senate meet jointly for a formal count of the electoral vote. In most modern elections these have been pro forma milestones, irrelevant to the outcome. This year, they may not be.--The Election That Could Break America
I am invigorated. I have stories to tell and I will pursue my work examining poverty and relying on CENSUS data to tell the narrative of our communities. The ability to connect during these times of social isolation, and to gather synergistically in support of the principles of The Atlantic.
Its befitting that I can hear the ceremony for Ruth Bader Ginsburg broadcasting from the United States Capitol playing on NPR in the background. The words remind me of what we are now responsible for pursuing. The ideals and grace of one who served and achieved so much for all of us.
“tzedek, tzedek tirdof” meaning “justice, justice you shall pursue” (Deut. 16:20)
And we should be reminded that it takes all of us to contribute to the ongoing promise of the First Amendment.
Continuing our theme of old is new again or “there is nothing new under the sun (Ecclesiastes 1:9)” creates the perfect segue to describe the main themes of a thought provoking documentary on Netflix. The Social Dilemma.
...The collective lack of understanding about how these platforms actually operate has led to hidden and often harmful consequences to society—consequences that are becoming more and more evident over time, and consequences that, the subjects in The Social Dilemma suggest, are an existential threat to humanity.--Netflix
After watching this movie you have to let it set in. How much of your behaviors are you willing to change? What curse has the ease of connectivity rained upon o' house? I doubt that any of us don’t know that we are the product being sold on these “free” platforms. But I’ll be darned if they aren’t entrenched into our lives in a seemingly intractable manner.
I am proud to say that I haven’t allowed notifications on my phone almost ever. I do get my texts because my family prefers them and there is an added bonus when I go on long runs. Siri whispers my texts into my ears. What could go wrong, right?
I also have disabled every modifiable opt-in, ad notifier, or tracker humanely possible. The list of apps requesting microphone or location permission is simultaneously funny and terrifying. I am talking to you Dropbox.
Here is another final push. Work more often on your platforms. Your website, your blog. I think I came to Instagram too late to see it as a business need. I post mostly when I travel but that has morphed into what I see along the trail or what I ate.
In my experience, LinkedIn works as a conduit for messages to reach you. Many new clients simply reach out by message so that is the biggest advantage I can see there. Not much more.
Do you host webinars or synchronous/asynchronous meetings? The evolution of virtual commerce allows many of us to adapt and customize how we bring value. We have become Zoombies but maybe Loom can do some of that heavy lifting? I have been using it more and more when creating instructional asynchronous learning--check it out here.
Are there any lessons about connecting in a remote world to be learned from the past?
Well it just so happens...
A Medieval Mother Tries Distance Learning
This amused me. I am not sure why my mind has been wandering back so far--to times of pestilence, depravity, and demise of civilization--oh. wait.
That is what the duchess, Dhuoda of Uzés, decided to gift her son. The Liber Manualis is a handbook of her wisdom, one that he should read, internalize, and apply to his own young life to navigate the complicated feudal politics of the age...He eschewed all her good advice on being a good vassal to his lord and got himself killed during a rebellion against Charles seven years after receiving her book. So Dhuoda’s curriculum didn’t help William much, in the end. But maybe it helped me understand, here in 2020, with schools shuttered for the fall semester, that advice given at a great distance can only ever go so far.
We can choose to heed warnings about our reliance on technology. I can’t remember the source of the advice but a conversation about AI and healthcare that seems so simple--if more folks would listen. Be cautious of AI that increases the distance between the patient and the provider. This is a metric I use when exploring biased algorithms and “shortcuts” in diagnostic pathways.
It is you, whose fate is grievous, who have chosen this; this fortune has not come to you from one more powerful; for when it was possible to show good sense, you chose to approve the worse, rather than the better fate.
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The Ginsu knife commercials may have launched the current sh*tstorm of gimmicky selling techniques. Although I could argue that most of the current media darlings were all but a twinkle in somebody’s eye when this thing was first launched.
You might make an argument for jealousy directed towards these multimillionaire course creators or YouTube stars--okay true, true. But mostly I am mystified. I’ll step you though my 'n of 1' experience. Because I just didn’t see the “there” there.
Or to quote Jerry Saltz “Learn the difference between subject matter and content”.
When you look at art, make subject matter the first thing you see--and then stop seeing it. Start seeing into the art; find what needs are being expressed or hidden there, what else is behind the narrative. A work of art is a rich estuary of material, personal, public, and aesthetic ideas. Let its water pass through the banks to reach you.--Jerry Saltz--How to Be An Artist
When I read the quote I think of graphics and data insights but you can see it is applicable to almost anything trying to get your attention. There has to be substance or intrigue to capture interest right?
Full disclosure, I am creating a digital course. It is all content no glitz. I don’t wear a ton of makeup, grin and smile, or make sure my hands are held up as I count the insights you will gain. Someone somewhere said to be certain your hands are visible so now when you look at videos you can’t miss the jazz hands.
I have been doing a little research on platforms, style, all of the under-the-hood preparation. It makes sense that this little course would find its way into my inbox. I am curious.
The woman in the video is a millionaire. She tells us how much money she makes and how she does it all with minimal effort, mentions her hunky husband, and also shares that she used to work for Tony Robbins. I can be a little critical because why would she care and let's face it--she laughs all the way to the bank.
The part that had me gobsmacked? There were almost 4000 people on this live “free” instructional video. I am not even sure what she sells but it seems like she is selling the idea of selling. If that was all, I would have simply thanked whomever forwarded the link perhaps muttering that it just isn’t for me. But...I was bored and started glancing at the chat comments.
For reference, my average class fees for learning technical and actionable skills in analytics run between $75 and $199. This entrepreneur was giving a bargain deal of close to $2000 dollars--to 4000 people--after telling them all directly how easy it all was for her and what a killing she makes.
The audience was eating it up. Signing up left and right. Many were asking if they could split it between two credit cards, others were going to start driving for Uber or meal delivery services in their area. It was a little heart breaking if I am going to be honest.
I need to write about the experience because it has been occupying space in my brain. And even if it wasn’t, this little video arrived in my inbox this morning:
Knowledge is knowing that a tomato is a fruit. Wisdom is knowing not to put it in a fruit salad.--Brian O'Driscoll
Back in the days of too many conference invitations to accept I would often walk the conference hotel entering into unstructured but important conversations with policy makers, distinguished keynotes and leaders in their field and I always had a similar feeling. The people that need to hear this are not in our audience.
Health insurance executives were not talking to the healthcare provider making decisions at the point of care, policy makers used terms like “we” and “us” to a room full of “them”, and often large parts of the discussion were muted. Without complete outreach to solve seemingly intractable problems we are either grasping at low hanging fruit, preaching to the choir, or intentionally poking out our own eye.
It was moments like these that moved me to work in healthcare data literacy and to start this blog over 5 or 6 years ago. Yes, from time to time you might have to use a new tool to be able to access large datasets but more important than the latest "Tableau How To" video--is a workflow of how to ask better questions. There is such complexity in how government, government policy, health economics, and clinical medicine intersect I found that with my press credentials I had access to conversations not openly available to my colleagues.
A vital part of my understanding of the complexity of health law and policy is derived from The Week in Health Law--an important podcast always but perhaps even more so in the current era. A recent report Assessing Legal Responses to COVID-19 has been published by the George Consortium and is discussed and available for download. I attempted to discuss insights with a few colleagues but was disappointed that not many were even aware of its existence.
This collection of 36 expert assessments shows that the COVID-19 failure is, in important ways, also a legal failure:
I have challenged well-meaning data visualizations attempting to provide clarity and information by providing access to data and access to a smart software platform. My fear was and is that we are missing the contextual arguments that provide relevance and meaning to our analytics. I think this report is a good place to begin.
Assessing Legal Responses to COVID-19--link to full report
How reliable is the data? Why isn't the US Centers for Disease Control and Prevention (CDC) an independent agency? You know, like the authors suggest, akin to the Federal Reserve? Politics shouldn’t influence data collection and statistical rigor during a pandemic--think back to AIDS research during the AIDs crisis and to current COVID-19 or research into firearm prevention and deaths...
As Patricia Williams points out in her powerful closing reflections on this Report, these disparities do not arise from bad individual choices or biological differences between races but the social factors that shape people’s lives every day “in the ghettoized geographies that have become such petri dishes of contagion.” These disparities are not inevitable. We as a society have created them. Centuries of oppression through policies, norms, and institutional practices shape individual experience and over time have created the inequitable society we inhabit.
This report contains over 220 pages arranged into 35 chapters across multiple domains relevant to the discussions around race and equity during the COVID crisis. My hope is that you will read every word but here is a quick synopsis of what I reviewed before listening to a panel discussion Coronavirus Conversations: Racial Bias in the Healthcare System & COVID Outcomes presented by Duke Science and Society.
One thing I note from my experience either participating in or observing these discussions is our keen focus on the symptoms of racial disparities in health instead of the structural elements that allow them to continue. Our nation rarely gives voice to our 400 year (and counting) origin story which I would argue may not just be part of the problem--but the whole problem.
The report dares to state unequivocally--here is the cause, the remedy, and implementation steps to address these gaps in equity painfully revealed during this latest pandemic.
Congress should also amend the Public Health Services Act to add transparency and accountability mechanisms that require the U.S. Health and Human Services Secretary and CDC Director to provide scientific support for guidance and orders responding to the pandemic. In the face of executive failure or deliberate suppression of information, it is urgent for Congress to mandate and fund efforts to assure the collection and dissemination of accurate data. Disease surveillance reports should require enhanced demographic data collection that includes sexual orientation, gender identity, and disability status.
I have taught several data workshops to bring tools like ArcGIS, Tableau, and simple coding to journalists and professionals attempting to either gather or access timely datasets. But here is the problem. Much of what we would need to illuminate and share data insights--isn’t being collected. Or even if it is collected--in the absence of harmonization or consensus on variables--how clear are the insights we can gather?
In particular, because most states have constitutional limitations on deficit spending, only the federal government can supply the resources needed to ensure adequate testing and personal protective equipment (PPE), and research in and distribution of countermeasures. Likewise, only the federal government can soften the pandemic’s economic impact and prevent it from exacerbating pre-existing inequities. The federal government needs to take more steps in each of these areas.
A recent COVID-19 dataset had captured “recovered”. Already confused by muddy definitions of “confirmed” cases I explored how determination was made in marking cases as recovered. What I was able to gather was crudely, a patient confirmed with covid but also non-dead.
The graphic below is surprisingly useful at noticing adoption of mitigation measures in the absence of a national response. I will leave you to make your own conclusions.
“We can divide ourselves up into races and castes and neighborhoods and nations all we like, but to the virus-if not, alas, to us-we are one glorious, shimmering, and singular species.”--Patricia Williams, JD
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