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Wednesday, June 30, 2010

e-Patient Ephemera

I will have an exhibition of my work on Thursday, July 29th at the Clinovations office in Georgetown. The Clinovations' mission is to: “Convene clinical leaders to share and create innovative solutions that improve the health of patients and support the healthcare system in the delivery of optimal care.”-(Clinovations website.) Not long ago I had the pleasure of speaking with some of their team, Dr. Ted Eytan, Dr. Trenor Williams, Anita Samarath, and Lygeia Ricciardi, about the blank white walls in their office. They inquired about the potential of hanging one of my patient-centered paintings in their space. The idea being that this would “incubate ideas for more regular patient involvement on the part of the consultancy as well as the clients”-(Dr. Ted Eytan.) I was all for hanging a piece in their space, but as we continued discussion the vision grew. We were all purveyors of social media: we like to share. Why just one piece, why not many? Why limit this to only Clinovations’ staff and clients? We could invite people from Gov 2.0, Health 2.0, the e-Patient movement, social justice groups and representatives from the arts community, as well as friends and family. A one-night art show was born. And what do you name a gallery show with the lifespan of a mayfly?

e-Patient Ephemera: 73 Cents meets the world of data capture.

Imagine an office suite usually filled with white boards, laptops and mobile smart phones, filled instead, with the 20 paintings depicting the current memes within health information technology. Imagine the ephemera of a life forming a brilliant mash-up of health information technology mixed within vibrant patina of patient rights.

I love the word ephemera. It feels like poetry upon my tongue. I love what it means: printed material not intended to be kept. Items of ephemera fill our life even in a digital age. We have ticket stubs, flyers, greeting cards, brochures, and business cards that we retain far past the point of their intended lifespan.

Anyone who has seen my art classroom knows that I keep everything. I am a collector of ephemera. I have every debate ballot I ever received, all of the letters my husband sent me while we courted, the playbill of every play we performed in, and a pile of paper bus transfers that span years. I love the ways ephemera can be incorporated within art to make a composition that touches an audience and depicts the meaning of a life.

I have a very important piece of personal ephemera. I have the medical record of my late husband. Sadly, from an institutional standpoint, it functioned as ephemera while he still lived. After I read my husband’s record, I asked the nursing staff, “Who reads this entire document?” “No one,” they said. “We only we only read the face sheet and most recent pages. “

For too many years the medical record has been viewed as only a billing document and a piece of daily medical ephemera. Hundreds of pages of vitals, imaging results, medical reconciliation and surgeries are distilled into the few pages that form a transfer summary. At each facility this process continues; each set of daily records entering the ether of a payment structure. A daily accumulation of data that will remain untouched by many if a lawyer and a potential lawsuit is not involved.

How did a document originally intended to facilitate communication and the medical history of a patient become a piece of billing ephemera? How dare institutions consign this living document a role as nothing more than a receipt of services rendered? With the advent of health information technology, the electronic medical record has the potential to leave its old role of medical ephemera and enter the virtual eternity of cloud based computing. Ah, the ability to create a lifetime electronic medical record consisting of transferable and actionable data is within our grasp. Or does this really matter?

Here is where that pile of bus transfers comes into play. From 2003 to 2008, I collected bus transfers as one of many types of ephemera in my life. My husband wondered at my behavior, but I told him I planned to do an art project with them. In January of 2009 my collecting stopped. The DC metro had decided to use to smart card technology for all transfers. No more free rides due to fingers covering the time expiration, no more handing off a transfer to a thankful stranger. Billing fraud was being dealt a heavy blow by technology. But in addition to facilitating better fiscal responsibility, Smart Card technology allowed Metro transit to easily track and study usage of transfers. The bus transfer had left the world of the ephemera and had entered the world of data.

We are on the cusp of that world within health information technology. As meaningful use is defined and people begin to adapt, we must guide these adapters of electronic medical record technology through the process and take great care to explain in such a way as to leave no one behind.

That is where the e-Patient enters the world of ephemera. An e-Patient is engaged, empowered, equipped and is an equal. E-Patients will take every tool available, be it information technology or medical ephemera; they will use these tools to change outcomes for the better. They are a bridging population that has a foot in both worlds. They are an amazing force that can effect adoption during this transitional time.

Today I experienced this struggle of transition within the microcosm of creating a post card invitation to my upcoming art exhibition. I spent the early morning talking back and forth within an email thread about the exact text and design of a paper post card. As we went back and forth on details, one person questioned why was I doing this in the first place. Was I actually going to mail this? I assured them I would mail some but I also wanted to post some in the neighborhood. Not everyone is using online communication.

This is a vital consideration as we push for access to the electronic medical record. We must communicate the need for a adopting this new technology in many ways. I paint to draw attention to the importance of adopting a transparent and accessible electronic medical record. Another way, I spread the word is by creating a postcard for this upcoming show. I am making a piece of e-Patient ephemera. I hope you can come to the show and see the art for yourself. And don’t forget to pick up one of the postcards while you are there--it will remind you of the importance of ephemera.

1 comment:

  1. I, too, have always liked the word "ephemera", and think it is interesting that you enjoy keeping stuff that is, by definition, intended to be discarded. But I think that part of the definition of an artist is one who is willing and able to do things that the authorities never intended.

    Your application of ephemera to the medical records domain reminds me of Nicholas Carr's controversial new book, "The Shallows: What the Internet is Doing to Our Brains", in which he argues that the instant - and constant - gratification we find on the Internet is impeding our ability and willingness to engage in deeper reflection and introspection. Your story shows that shallow processing is not restricted to the Internet, and suggests (to me) that shallowness may be more indicative of the time we are willing to allocate to understand inputs than the channel through which those inputs are provided (the moniker "dittohead" reflects a shallowness that is promoted through broadcast radio).

    The Internet may accelerate the presentation of inputs, but the bigger issue is how we train ourselves to look and think more deeply ... and how we can design incentive systems that support greater depth.