The Aesthetics Of Health Care Technology

“

we are simply not equipped with ear lids

Marshall McLuhan, The Medium is the Massage (via ellempire)

05/15/12

Pachyderm

by Sherman Alexie

1.

Sheldon decided he was an elephant.

2.

Everywhere he went, he wore a gray t-shirt, gray sweat pants, and gray basketball shoes.

3.

He also carried a brass trumpet that he’d painted white.

4.

Sometimes he used that trumpet as a tusk.

5.

Then he’d use it as the other tusk.

6.

Sometimes he played that brass trumpet and pretended it was an elephant trumpet.

7.

Every other day, Sheldon charged around the reservation like he was a bull elephant in musth.

8.

Musth being a state of epic sexual arousal.

9.

Sheldon would stand in the middle of intersections and charge at cars.

10.

Once, Sheldon head-butted a Toyota Camry so hard that he knocked himself out.

11.

Sheldon’s mother, Agnes, was driving that Camry.

12.

Agnes did not believe she was an elephant nor did she believe she was the mother of an elephant.

13.

And Agnes didn’t believe that Sheldon fully believed he was an elephant until he knocked himself out on the hood of the Camry.

14.

In Africa, poachers kill elephants, saw off the tusks, and leave the rest of the elephant to rot.

15.

Ivory is coveted.

16.

Nobody covets Sheldon’s trumpet, not as a trumpet or tusk.

17.

On those days when Sheldon was not a bull elephant, he was a cow elephant.

18.

A cow elephant mourning the death of her baby.

19.

In Africa, elephants will return again and again to the dead body of a beloved elephant.

20.

Then, for years afterward, the mournful elephants will return to the dead elephant’s cairn of bones.

21.

They will lift and caress the dead elephant’s ribs.

22.

By touch, they remember.

23.

Sheldon’s twin brother died in the first Iraq War.

24.

1991.

25.

His name was Pete.

26.

Sheldon and Pete’s parents were not the kind to give their twins names that rhymed.

27.

In Iraq, an Improvised Explosive Device had pulverized Pete’s legs, genitals, ribcage, and spine.

28.

Sheldon could not serve in the military because he was blind in his right eye.

29.

In 1980, when they were eight, and sword fighting with tree branches, Pete had accidentally stabbed Sheldon in the eye.

30.

When they were children, Sheldon and Pete often played war.

31.

They never once pretended to be killed by an Improvised Explosive Device.

32.

Only now, in this new era, do children pretend to be killed by Improvised Explosive Devices.

33.

Pete was buried in a white coffin.

34.

It wasn’t made of ivory.

35.

At the gravesite, Sheldon scooped up a handful of dirt.

36.

He was supposed to toss the dirt onto his brother’s coffin, as the other mourners had done.

37.

But Sheldon kept the dirt in his hand.

38.

He made a fist around the dirt and would not let it go.

39.

He believed that his brother’s soul was contained within that dirt.

40.

And if he let go of that dirt, his brother’s soul would be lost forever.

41.

You cannot carry a handful of dirt for any significant amount of time.

42.

And dirt, being clever, will escape through your fingers.

43.

So Sheldon taped his right hand shut.

44.

For months, he did everything with his left hand.

45.

Then, one night, his right hand began to itch.

46.

It burned.

47.

Sheldon didn’t want to take off the tape.

48.

He didn’t want to lose the dirt.

49.

His brother’s soul.

50.

But the itch and burn were too powerful.

51.

Sheldon scissored the tape off his right hand.

52.

His fingers were locked in place from disuse.

53.

So he used the fingers of his left hand to pry open the fingers of his right hand.

54.

The dirt was gone.

55.

Except for a few grains that had embedded themselves into his palm.

56.

Using those grains of dirt, Sheldon wanted to build a time machine that would take him and his brother back into the egg cell they once shared.

57.

Until he became an elephant, Sheldon referred to his left hand as “my hand” and to his right hand as “my brother’s hand.”

58.

Sheldon’s father, Arnold, was paraplegic.

59.

His wheelchair was alive with eagle feathers and beads and otter pelts.

60.

In Vietnam, in 1971, Arnold’s lower spine was shattered by a sniper’s bullet.

61.

Above the wound, he was a fancy dancer.

62.

Below the wound, he was not.

63.

His wife became pregnant with Sheldon and Pete while Arnold was away at war.

64.

Biologically speaking, the twins were not Arnold’s.

65.

Biologically speaking, Arnold was a different Arnold than he’d been before.

66.

But, without ever acknowledging the truth, Arnold raised the boys as if they shared his biology.

67.

Above the wound, Arnold is a good man.

68.

Below the wound, he is also a good man.

69.

Sometimes, out of love for Sheldon and Sheldon’s grief, Arnold pretended that his wheelchair was an elephant.

70.

And that he was a clown riding the elephant.

71.

A circus can be an elephant, another elephant, and a clown.

72.

The question should be, “How many circuses can fit inside one clown?”

73.

There is no such thing as the Elephant Graveyard.

74.

That mythical place where all elephants go to die.

75.

That place doesn’t exist.

76.

But the ghosts of elephants do wear clown makeup.

77.

And they all gather in the same place.

78.

Inside Sheldon’s ribcage.

79.

Sheldon’s heart is a clown car filled with circus elephants.

80.

When elephants mourn, they will walk circles around a dead elephant’s body.

81.

Elephants weep.

82.

Jesus wept.

83.

Sheldon’s mother, Agnes, wonders if Jesus has something to do with her son’s elephant delusions.

84.

Maybe God is an elephant.

85.

Sheldon’s father, Arnold, believes that God is a blue whale.

86.

Some scientists believe that elephants used to be whales.

87.

Sheldon, in his elephant brain, believes that God is an Improvised Explosive Device.

88.

Pete, the dead twin, was not made of ivory.

89.

But he is coveted.

90.

If Jesus can come back to life then why can’t all of us come back to life?

91.

Aristotle believed that elephants surpassed all other animals in wit and mind.

92.

Nobody ever said that Jesus was funny.

93.

Then, one day, Sheldon remembered he was not an elephant.

94.

Instead he decided that Pete was an elephant who had gone to war.

95.

An elephant who died saving his clan and herd.

96.

An elephant killed by poachers.

97.

Sheldon decided that God was a poacher.

98.

Sheldon decided his prayers would become threats.

99.

Fuck you, God, fuck you.

100.

Sheldon wept.

101.

Then he picked up his trumpet and blew an endless, harrowing note.

05/3/12

Design, information and diabetes at CIID

“Information is cheap. Understanding is expensive.” -Karl Fast, at the 2012 IA Summit

This post is about communication, design, diabetes and healthcare. Im in a place (CIID) with people who see like me about design. I talk about the incompetencies of the tools we have to manage T1 diabetes daily, my colleagues are curious and interested, many are searching for a focus for their own work. Currently I am working with two colleagues in our GUI class to make an app that tracks data. We chose health and yesterday was a day of brainstorming and research about medical apps.

We walked and talked for two hours, I was pushing to build an app with diabetes as the focus. The main thing that kept coming up for my colleagues was that they didn’t understand the disease, it was too fast to jump into building an app for something they didn’t understand, they just wanted more time to understand. Thats understandable. I tried to explain, starting with basics, insulin is a hormone that your pancreas produces. The insulin opens the blood cells so that they can use the sugar in the blood stream. Carbohydrates, when eaten, put sugar in your blood and therefor you need insulin to regulate that sugar. Simple right? But when it got down to actually understanding the management of T1 diabetes it was really hard for them to do, rightfully so. Although my colleagues affirmed that they understood what i was saying, we later discovered that it was actually much more complex than they had thought. Reflecting on this now, I think i saw in them a small hint of the overwhelmed and fearful feeling that we all battle with when trying understand our health information. Like quoted above, Information is cheap, understanding is expensive.

When we returned from our walk and talk and were back at school, I thought what else could i share with them, how could i explain the concept i had for the diabetes app. Mainly, how could i share what i know about diabetes to make them feel comfortable working on a diabetes app. I know that the idea i have is simple, easy to execute, there is a need for it, and it would be part of a larger project that I’m working on i.e. it would be taken to the real world and developed instead of lie in the pit of concept projects. I really wanted to do it.

Back at school i showed them these graphs i have been making to track my blood sugar, insulin, food and carbohydrates. One of my colleagues spent a few hours trying understand and absorb the information that was there. I could see so clearly his brain churning and churning to process the information and have a better understanding of what I was talking about. Both of my partners asked many questions, sometimes the same questions multiple times just trying to get a grasp. They both exclaimed how helpful the visual aid was, to see all the numbers, to see the relation between the numbers. To see the complexity of the information. One of my colleagues has a statistical analysis background and she was excited and inspired by how much you could do with this data. I could feel my endorphins kick in and everything inside me light up. This is what we need! Not developers (Steve Balmer) Designers! designers designers designers! There is just SO much room for improvement, there is SO much low hanging fruit. (Stephen Anderson gives a super good example of dealing with health info…its pretty easy…) So in part i suppose, this post and story is a plea to my colleagues and anyone who reads this to work on making our health systems, data and information more usable. PLEASE.

Working on Line (website will be released next week) i sometimes feel competition with other health start ups, there is an underling feeling of anxiety, that someone else will do it better. But really, actually, whenever that feeling comes up, another stronger and deeper feeling comes up too, and when tears rise up to my eyes (seriously) I just want everyone to make our health care services systems information devices more beautiful, more usable, and more human. We have the tools, we have the smarts, the eyes, the hands and the ability to do it. The competition is good, its what we need. It drives the change and innovation and we are all after the same goal anyways. That is one of the things I love about this field, people are so personally invested that the larger goal overshadows the desire to be rich and famous.

To sum up my learnings….

1. Diabetes is actually very complex, and most people really don’t understand it. This is extremely useful for me to understand, for my own health and for the communication and sharing about what is needed.

2. Visuals are SO useful in explaining complex things. DUH. Duh.

3. I need to figure out how to communicate, share and inspire others to work on health care. There is a huge opportunity for me at CIID to share what I know about diabetes and about the health care system and inspire the incredibly talented and finely tuned designers that i am in school with.

(this is the chart that i showed my partners)

04/21/12

First of all, its awesome. Second, I’m thinking about the balance of image/aesthetic and color with information. I think Tufte would say that there is much wasted real estate. I think I would agree, but then thinking about accessibility and audience…who is looking at this? Who is using the information? How can you use the information? Is the point the use of the information? Maybe its not the point. Maybe the point is that it is one bit of the slow arduous culture change. All in all, its great, and im in full support.

These days, especially working with Ian Jorgensen on Line (new website release next week), im all for fast making and sharing. Dont over analyze, dont critique too much. Just make SOMETHING and get it out there because the health design data etc world is in HUGE need and theres not much out there.

04/21/12

visualizing blood sugar data at CIID

This is a visualization of blood glucose data created by Andrew Nip and I with the help of Golan Levin. It is a part of a platform called LINE that helps users to visualize, contextualize, connect and share blood glucose data (coming out soon!).

We are using a twenty-four hour clock, each ring representing a day. Users are able to zoom in and out to see long and short term trends as well as control the range of blood glucose that they are aiming for. The colors of each reading represent low, good and high numbers. Mousing over individual readings display the number and time of the reading.

Data is uploaded as a csv file through the Glooko cord. The Glooko cord interfaces with multiple blood sugar meters and connects directly to an iphone. Users export and email the data file to LINE’s server which then uploads it into the visualization and application.

special thanks to…
Golan Levine, Martin Ignac, and Ian Jorgensen

03/22/12

Kids, mHealth, and diabetes

03/10/12

a must see

03/8/12

02/27/12

“

Along the way it seems like someone overlooked the notion that a medical procedure is a most emotional thing to go through as human being. Devices are devoid of emotion. They’re scary. They have no look on their face. When you encounter an MRI or a mammography device, it doesn’t tell you you’re going to be ok or make you feel good about what may happen. It makes you wonder ‘am I going to die now?’ We wonder: why is that? Aren’t we in charge? Folks in design and our brothers and sisters in engineering should guide the direction these devices take.

Bob Schwartz, general manager of global design at GE Healthcare, speaking at the recent Transform conference at Mayo Clinic and extolling the benefits of thoughtful design for healthcare products. Schwartz rounded off the session (a joint presentation with GE CMO, Beth Comstock) recounting the story of a little girl who emerged from being scanned in one of GE’s redesigned machines to ask her mother: “can I do it again?” Great. (via thoughtyoushouldseethis)

02/26/12

interesting….

http://healthland.time.com/2012/01/24/magic-mushrooms-expand-the-mind-by-dampening-brain-activity/

02/16/12

advocating for getting the data from inside your body http://www.technologyreview.com/biomedicine/39167/

02/15/12

touchable holograms!

http://www.youtube.com/watch?v=3seTlvQtIgc&sns=fb

02/14/12

not specifically about health and design, but thinking about data…..how to use public health data in conjunction with personal data…. hmm, #medicalavatar combines and personalizes in a really effective way (although i haven’t tried it)

http://bit.ly/AfQPTR

02/12/12

“Your body is an API that developers are just beginning to figure out”

http://bit.ly/AfQPTR

there is so much data being collected, what do we do with it? how do we use it? how do we integrate it and process it? We are at the beginning of having any inkling of how to use the information we are able to collect. The development of technology is incredible, but without connecting the tech to our emotional and psychological selves, it is like water overflowing. Its well known and not a new idea, just saying that it is so important. Its not what we make is how we use it.

02/12/12

Top five regrets of the dying

jayparkinsonmd:

nevver:

I wish I’d had the courage to live a life true to myself, not the life others expected of me.

I wish I hadn’t worked so hard.

I wish I’d had the courage to express my feelings.

I wish I had stayed in touch with my friends.

I wish that I had let myself be happier.

more

Also, read The Life Reports.

(via skrugman)

02/11/12