From Jamie Allen - http://post-digital.projects.cavi.dk/?p=356. Thinking about medical data from this perspective….
“Whenever things were frightening, it was a good idea to measure them.”
—Daniel Kehlmann, Measuring the World
The promise that base metals supposed for the alchemist, and the capacities that scryers gave to globes of rock crystal, is the promise that “data” brings to our present moment. Richard Wright’s essay for “Software Studies, A Lexicon” (2007), points to the archive fever and historical anxiety from which contemporary techniques of data visualisation arose: “In 1987 the US National Science Foundation published their “Visualisation in Scientific Computing” report (ViSC) that warned about the “firehose of data” that was resulting from computational experiments and electronic sensing.” (Fuller 78) Artists, “creative technologists,” designers, programmers are, right this moment, developing an enormity of alternate perspectives on comma delimited lists, spreadsheets and other seemingly humdrum data formats and sources. The tools they employ often involve a surprisingly potent mix of simple statistical techniques, aesthetic schemes, and data massaging.
But the whole endeavour reveals a quintessential epistemic irony of our data-age: Data is collected in order to characterise the truth of an object or event. But, having collected too much data, of a kind that is impossible to comprehend directly, we elaborate a whole literature of symbols, infographics, explanations and visualisations. As Vilem Flusser puts it, “…every mediation between man and the world, [is] subjected to an internal dialectic. They represent the world to man but simultaneously interpose themselves between man and the world (“vorstellen”). As far as they represent the world, they are like maps; instruments for orientation in the world. As far as they interpose themselves between man and the world, they are like screens, like coverings of the world.” (Flusser 2007) We drill-down, slice and sieve the database —digital dowsing, attempting to “strike oil,” or to “sift gold” from these stratifying datasets. And here again is why geological thinking is more than an inter-disciplinary conceit. We find ourselves inventing a new tectonics of the database, an elaborate succession of measurements and multiple-working-hypotheses, that we hope will bring us closer to the realities we seek to characterise. But, there is much to be said for the insights wrought by perspectivally looking at the data. Perhaps “a landscape is best viewed with a single source of light—the sun, one light bulb, a lone candle, a lone writer – so that all the shadows and highlights are true to each other.” (Coupland Extraordinary Canadians Marshall Mcluhan) In order to study something highly non-linear, perhaps we must first arrange it, slice through it, in or with a line.
I was honored to host the recent Diabetes Data Exchange with Amy Tenderich and Howard Look (Thanks to the CHCF). Our goal was to get the people who are working with diabetes data in one room. To share our work with one another and make needed calls to action - for better access to our diabetes data. We did accomplish that, and I was floored with the incredible work that everyone was doing. I came away asking myself why is personal data meaningful?
It’s easy to get swooped into the vision of diabetes data is the light at the end of the tunnel. The data is not the end all be all truth but it is an incredibly rich base for building tools that will make managing diabetes a lot easier. We just need to question our relationship to it, how we present it, talk about it and use it.
Its useful as a way to look at ourselves, as a mirror, to know ourselves. The body is tricky, sensitivities to everything morph and change with context. We can learn from the data because it provides a ground, a reference to the roller coaster of each day. We can see what we did last time and analyze if we should do the same this time. Unlike many data sets, diabetes data is extremely actionable.
The display and use of data is analogous to how we use a map to find which direction to go in. A map does not show the land, it shows a specific perspective of it.
We cant assume the neutrality of a map or our data. Last year I interviewed a women who had just stopped using a Continuos Glucose Monitor (CGM). The CGM shows a live stream of what your blood sugar is doing, You can see if its rising or falling, fast or slow. She told me that when started using the CGM, every time she saw the graph going up she stopped eating, because she didn’t want her blood sugars to be high. She ended up loosing too much weight, so much that she had to stop wearing the sensor and her insulin pump. She didn’t have enough fat to have the devices, and returned to using shots until she was able to gain the weight back. She went back on her pump, but not the CGM.
I don’t want to send the impression that data is dangerous, I do want to say that I think it is super important to spend time developing the ways in which we present it, talk about it and use it. However, we’ve not been able to do that but having Tidepool enables the development of tools that are useful to me. I cant wait to see what gets built…
The A1C is measured quarterly, like business, seasons, red blood cells…
Told me i was below 50, tested and I was at 161. Un-trustable. strike one. But I overstepped boundaries and wore it for two weeks when its supposed to be good for one. The skin keeps a mark. The wire is hair thin. The sticker looks like dried skin. Clean, fresh and generous it was. really felt a part of me. More than a pump. I wonder if the omni pod feels similarly because it is stuck to your body. Or my affection to the CGM is because of what it provides for me, its telling me about myself. With the pump, I’m telling it what to do, and it does what i say. CGM gives me details. Pump asks of me. With CGM, its quantification doesn’t do it all. Then there is the communication between device, body, self and other people. The CGM separates the mind and the body in a peculiar way. The alarm coming from the device takes the voice away from my mind, or conscious self. And if I’m so low i can’t speak i would scream from inside and it would yell for me. Thank you CGM. Im consciously low, alarm speaks over me and without my permission. I would like the choice whether or not to give CGM my voice. Would another recognize? Is there a medical alert sound? How would they know what to do? Perhaps CGM is better with intimate relationships. Boyfriends and girlfriends. Parents and kids. Husbands and wives. Mothers and fathers.
During Anthony Gilbey’s six days of dying he floated in and out of awareness on a cloud of morphine. Unfettered by tubes and unpestered by hovering medics, he reminisced and made some amends, exchanged jokes and assurances of love with his family, received Catholic rites and managed to swallow a communion host that was probably his last meal. Then he fell into a coma. He died gently, loved and knowing it, dignified and ready.
“I have fought death for so long,” he told my wife near the end. “It is such a relief to give up.”
We should all die so well.
In the end, the age of the godly doctor and the supplicant patient is coming to an end. It will likely take decades, but I wouldn’t be surprised in my lifetime to see some iterative version of IBM’s Watson occupying a corner of everyone’s home, diagnosing and potentially treating a huge range of maladies. Artificial intelligence, nanotechnology, and the Internet (to just mention 3 major vectors) will converge to transform medical care and alter the meaning of what it is to be a doctor. Full and complete access to one’s own medical history is a prerequisite to this progress, and doctors who stand opposed to it are ultimately standing in the way of progress. http://arstechnica.com/tech-policy/2013/03/majority-of-doctors-opposed-to-full-access-to-your-own-electronic-records/
This blows my mind
The bouba/kiki effect is a non-arbitrary mapping between speech sounds and the visual shape of objects. This effect was first observed by German-American psychologist Wolfgang Kohler in 1929. In psychological experiments, first conducted on the island of Tenerif (in which the primary language is Spanish), Köhler showed forms similar to those shown at the right and asked participants which shape was called “takete” and which was called “baluba” (“maluma” in the 1947 version). Data suggested a strong preference to pair the jagged shape with “takete” and the rounded shape with “baluba”.
In 2001, Vilayanur S. Ramachandran and Edward Hubbard repeated Köhler’s experiment using the words “kiki” and “bouba” and asked American college undergraduates and Tamil speakers in India “Which of these shapes is bouba and which is kiki?” In both groups, 95% to 98% selected the curvy shape as “bouba” and the jagged one as “kiki”, suggesting that the human brain is somehow able to extract abstract properties from the shapes and sounds.Recent work by Daphne Maurer and colleagues shows that even children as young as 2.5 (too young to read) may show this effect as well.
Ramachandran and Hubbard suggest that the kiki/bouba effect has implications for the evolution of language, because it suggests that the naming of objects is not completely arbitrary. The rounded shape may most commonly be named “bouba” because the mouth makes a more rounded shape to produce that sound while a more taut, angular mouth shape is needed to make the sound “kiki”. The sounds of a K are harder and more forceful than those of a B, as well. The presence of these “synesthesia-like mappings” suggest that this effect might be the neurological basis for sound symbolism, in which sounds are non-arbitrarily mapped to objects and events in the world.
Individuals who have autism do not show as strong a preference. Where typically developing individuals agree with the standard result 88% of the time, individuals with autism only agree 56% of the time.
This historic photograph depicted former Centers for Disease Control (CDC) parasitologist, Dr. Mae Melvin (Lt), as she was examining a collection of test tubes, while her laboratory assistant was mouth-pipetting a culture to be added to these test tubes.
Now, mouth-pipetting is considered a very unsafe practice, and is no longer practiced. Also, gloved hands are now considered the norm in the laboratory environment, as well as the use of other personal protective equipment including goggles, for one’s eyes, and a disposable face mask.
Physical discomfort: A sickly sweet nausea and a close gag. A slug like functioning of brain and body.
Guilt: what did I do wrong, did they see me eat that piece of chocolate and are now judging? It couldn’t have been the chocolate…. the port where my pump was connected, where i get my insulin, was not in right and the insulin wasn’t being absorbed. One of the downsides of having a pump is that if you don’t get insulin for more than an hour your blood sugar goes high fast, there is no other sustained backup of insulin like youde have taking long acting insulin or with a working pancreas.
Fear: sustained high blood sugars are what causes nerve damage in the long run, in the toes, eyes, kidneys, liver…. primary cause of side effects from diabetes. That is terrifying when i actually think about it- mostly i don’t because it will ruin me if i do.
Sadness: i always could be doing better, i will never be as good as a pancrease, my mind is not built to do that, my pancreas was but it can’t, so i try. sadness of the implications that long term side effects might have on the relationships, experiences and life ahead.
Isolation: a constant complaint to the people around you is draining and tiresome. A complaint that is foreign and not applicable to people who don’t have diabetes. A complaint that i don’t want to be interpreted as an excuse or an emergency. An invisible disease. Looking healthy and happy, the intricacies of how diabetes slithers through the pieces of my day are complex and largely unseen and unspoken.
this is beautiful and simple. lovely combination of materials and methods for communication.
i just love this, the insulin pump has come a far way since then, but is it as sexy?
I’ve been reading a book called The Heights, by Kate Ascher. You may remember her first book, The Works, The Anatomy of New York City. The Heights is a book about the anatomy of a skyscraper. It’s almost as fascinating as The Works, but that’s hard to beat considering The Works is one of my favorite books of all time. There are a few chapters in The Heights devoted to elevators. One passage struck me hard:
Today’s elevators come in shapes that would surprise even Otis. Double-deck elevators allow loading and unloading at adjacent floors simultaneously, while twin-shaft systems feature multiple cabs moving within the same shaft. These and others now travel at speeds he could hardly have imagined— limited only by the ability of the human ear to adjust to changes in air pressure.
I find this fascinating— technologies that can’t be improved upon because humans cannot evolve fast enough to keep up with technology. This essentially means we’ve witnessed the near perfection of elevators. What are the others? I’d say the iPhone retina display. We simply cannot make a better display because our eyes cannot discern the difference between today’s display and one packed with more pixels. It’s kind of depressing, but at the same time awe-inspiring.
I’m pretty fascinated with the intersection between technology and the human body. But even more importantly, the technologies that have advanced so far that the only limitation is our own anatomy.