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Regina Holliday and The Art of Advocating for Patients’ Rights

Amy Cueva - August 31st 2010

On June 17th 2009, Regina Holliday’s husband, Fred, lost his battle with kidney cancer, dying peacefully at home surrounded by his family. However, Regina’s fight for patients’ rights was only beginning.
 
Despite working five jobs between them, Fred and Regina couldn’t afford health insurance. By the time Fred Holliday was hired as an assistant professor of literature and performing arts at American University – a job that included family health benefits – it was too late. On March 27, 2009, Fred was diagnosed with Stage 4 kidney cancer.
 
Artists are no strangers to social change. As an accomplished artist, Regina Holliday grew up in a home where Picasso’s “ Guernica” hung in the kitchen. She channeled her fury and frustration with a broken healthcare delivery system into her art.

After Fred died, Regina picked up her brushes. She constructed “73 cents”, a 20-foot high mural located at 5001 Connecticut Avenue in Washington, DC, depicts Fred on his deathbed, clutching a note that reads, “Go after them, Regina. Love, Fred.” The couple’s two sons appear in the painting, as well as images of distracted healthcare personnel and nods to “Guernica". The mural is dense with symbolism and emotion.

Regina’s mural movingly depicts the horrors she and her husband faced once they were caught up in the medical system, which included the following:
• Waiting six agonizing hours to get pain medication while admissions paperwork was processed.
• Staff injuring Fred, who were unaware of his cancer's progression.
• Paying 73 cents a page for copies of Fred’s medical record – a 100 page document
• Waiting over 24 hours for essential information about the care he needed.

While waiting for the medical record, with her husband in pain, Regina cobbled together a medical record herself, assisted by nurses. There was a computer in the room, but patients' families were not allowed to use it. This forced Regina to leave her ailing husband at night, drive home and use her own computer to research his condition.

Additionally, Regina painted a mural titled “Medical Facts,” a data visualization she wished Fred's doctors had seen when treating him. The mural depicted a synthesized visualization of Fred's medical history and current status, which would have efficiently informed his doctors of his condition, resulting in better medical care.

Much like Nutritional Facts, Regina wanted "Medical Facts" to highlight the need for a standard way of communicating essential health information, assisting with data consumption and accuracy. Data visualization in healthcare presents huge opportunities for improving information presentation and care.


Regina Holliday has expanded her activism by blogging, attending healthcare conferences, and appeared with Senate leaders at a news conference to push the envelope of health data access and patient rights forward.


I would like to end with Regina’s own words:
“The modern medical system has many problems that need to be addressed. There are those who wish to polarize this debate, and so doing would condemn us all. For the end will not elude us, and in the end we are all patients.”

Check out Regina’s blog:
http://reginaholliday.blogspot.com/
Read More about “73 Cents”:
http://reginaholliday.blogspot.com/2009/09/dark-willow-and-73-cents.html
Read the Article “Faulty Construction”: A review of the issues associated with current EHR technology:
http://www.fortherecordmag.com/archives/080210p10.shtml

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Zen and the Art of Interaction Design

Dustin DiTommaso - August 31st 2010

Everyday we interact with digitally-enabled machines and services to work, play, learn, create, connect and communicate.

When our experience is positive, there is little to notice. Our needs were met and the machine performed as an extension of ourselves, or as a polite and helpful stranger.

When our goals are met and our machines offer us unexpected and gratifying responses, we are seduced and delighted.

When we can’t complete our goals, we become lost or rudely told we made an error, we feel very differently.

The quality of the interactions we have with digital systems - the successes and failures, expectations and surprises determine the overall experience we perceive upon engagement and reflection.

This is the world of interaction design (IXD) and the responsibility of the interaction designer. Interaction Design attempts to humanize technology and shape machines’ logic into polite, articulate conversations that users can engage in. The Interaction Designer must understand the intentions of the audience and the audience must understand the intentions of the designer. At its core, Interaction Design must be a human-centered activity, augmented or constrained by technology, but not subservient to it. IXD is a balance of form, function, technology, action and response designed to support human cognition, influence perception and arouse emotion.

The Interaction Design Association (IxDA) defines interaction design as:
  • The structure and behavior of interactive systems.
  • Interaction Designers strive to create meaningful relationships between people and the products and services that they use, from computers to mobile devices to appliances and beyond.
They continue to add:
  • Good interaction design effectively communicates a system’s interactivity and functionality, defines behaviors that communicate a system’s responses to user interactions, reveals both simple and complex workflows, informs users about state changes and prevents user error.
  • Interaction design is grounded in an understanding of real users (goals, tasks, experiences, needs and wants) and balances these needs with business goals and technological capabilities.
Interaction Design, as a discipline, is still being shaped and honed in definition and craft. Even though we focus on designing in the digital age, the design processes and methodologies can and have been used for solving non-digital design problems.

From Use to Engagement

Somewhere when the 80s rolled into the 90s, IDEO designers Bill Moggridge and Bill Verplank coined the term “interaction design” to more accurately define their work as they applied “soft-faces” or “UIs” to hardware products. This design requirement was quickly growing and as Dan Saffer pointed out in “Designing for Interactions” “suddenly the problem of how to set the clock in our VCRs spread to all aspects of life.” Interaction designers had to bridge the gaps between industrial design and software design. A new discipline with a new set of skills, problem framing and process needed to emerge.

The explosion of the internet and Marc Andreessen’s Mosaic browser introduced new problems and challenged designers to come up with new paradigms for interactions. At the time, digital design was highly experimental, rife with failure and bad decisions, driven largely by engineers and profiteers looking to make a fast IPO. Eventually, some interaction and technology standards emerged and the Web became a solvent platform for useful and usable design.

Over the following decade, the Web grew from an information, entertainment broadcast and consuming platform, to a true communication and productivity platform. Traditional endeavors, such as banking, shopping and socializing have moved online. In addition,  new ways of doing things are now accomplished from mobile phones, consoles, kiosks and of course touch-screen interfaces. New models of interaction are constantly emerging.

With the speed and depth of technological advances, the future of interaction design is more important and exciting than ever. Interfaces that may have seemed like science fiction only years ago are already appearing in conceptual form - flexible surfaces, spatial motion interfaces, augmented reality, retina, eyewear and neural interaction.  It will be our job to build systems, components and forms of control that optimize the behavior of the digital products and services to come and humanizes the dialog, respect and connection between man and machine.

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Now, if Only Everyone Would Wear a Mood Ring...

Courtney Parkinson - August 27th 2010

Marketers, designers and pretty much anyone who is passionate about their professional careers can gain a lot by reading Seth Godin. http://sethgodin.typepad.com/seths_blog/

“Is your brand providing the right room to the right people at the right time?
Most products, most services--they provide a thing, a list of features, but not a
room for my emotions.” - Seth Godin

I am a tremendous fan of Seth Godin’s work. As a marketer, consumer and human being I found this quote of particular interest.

Objects, people, slogans and the words we read can alter a person’s state of mind. Marketers are often on the front lines of receiving negative feedback. However, what about designers, artists, or the waitress at your favorite restaurant? Intended or not, we’re influencing and sometimes driving your emotions. Do we seek to alter others’ moods? Are we always trying to influence or affect those we cross paths with?

If so, why do we repeat them? Why search out the bad when clearly we know how to get the good? As a marketer, why not make someone feel happy. For example, why use the visual of an animal in a cage to pull on the heart strings of viewers to get them to donate money? Moreover, why does it take such a heart wrenching image to get us to act?

“Once your habit becomes an addiction, it’s time to question why you get up
from a room that was productive and happy, a place you were engaged, and
walk down the hall to a room that does no one any good (least of all, you).
Tracking your day and your emotions is a first step, but it takes more than
that. It takes the guts to break some ingrained habits, ones that the people
around you might even be depending on.” – Seth Godin

Again, I come back to what makes us act. Why does negative, upsetting or extremely uncomfortable messaging force us to take action more than messaging with little or no emotion?

As a Marketer I’m torn by which emotion to tap; negative or positive? Do I tug on your heart strings or make you laugh? However, there may be room for both.

“Great brands figure out how to supply a ‘room’ to anyone who chooses to
visit.” -Seth Godin

As always, it’s your choice.


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