AHRQ An Artist and Caregiver's Perspective
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The document discusses the importance of open data sets and aggregation and access to health data at both the individual and societal level. It advocates for increased sharing and comparing of data to lead to better health outcomes for all. The loss of Frederick Allen Holliday, PhD is also referenced as an important data point.
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AHRQ An Artist and Caregiver's Perspective
- 1. AHRQ: Leading Through Innovation and Collaboration September 18-21, 2011: An Artist’s and Caregiver’s Perspective By Regina Holliday
- 2. Open data sets let us compare apples to apples.
- 3. The data point I loved and lost: Frederick Allen Holliday , PhD.
- 4. Aggregation of data and access to data is important to the individual.
- 5. Aggregation of data and access to data is important to society.
- 6. The future of Data access is Sharing Data and Comparing Data For better Health outcomes for us all.
Editor's Notes
- In this painting entitled “Half of Me” there are two Cindy Throops. Both are framed within the shape of an unlit bulb. The top Cindy in yellow is happy and joyous beside her is a stuffed cat dressed in a small shirt with a happy face upon it.Below this Cindy and placed upside down is another dressed Cindy dressed in gray. This Cindy is stern and sad. She types upon a laptop the words “You are only treating half of me.” Beside her is Throop Cat again --but this time in a straitjacket.
- This is a painting of data. This is Apples to Apples. This is my take on what data can look like when presented in a visual form. I took patient satisfaction survey results and clinical care results from George Washington University Hospital and combined them with the allegorical image of a child’s report card. In this painting the sky is a swirling storm cloud of information. It crosses the field of vision like the data on a computer screen. Scrolling left to right and falling off into a nether-land of statistical confusion. This data reflects clinical care. It shows whether or not the correct medicines were given in a timely fashion. It shows how long people live after a heart attack. It is the background and sets the scene for action. In the mid-ground are four images. To the left is George Washington University Hospital looming in the stormy sky. To the far right is a tower of children’s alphabet blocks. These blocks spell "H C A H P S". This is the acronym for Hospital Consumer Assessment of Healthcare Providers and Systems. These are the building blocks that help patients make decisions about where they would like to be admitted if hospitalized. Sandwiched between the two structures are two children. The small boy holds out two apples. He would like to show you that you have a choice. You, the patient, can decide where to receive care. Due to HCAHPS, you can now compare hospitals based on patient survey satisfaction results. Next to the boy stands a girl. She is concerned as she shows her report card. The patient satisfaction data is now represented in a report card format. Comfortably average scores are now shocking when depicted by C’s, D’s and F’s.In the foreground lies our patient. He is trying to research. Hand upraised in frustration or confusion, he tries to comprehend the data before him. His attention is torn between the offer of choice and the presentation of data.
- The center of the Painting73 Centsis our family. My husband is positioned like Marat in David's Death of Marat. His eyes are closed and he is peaceful on his hospital bed. Not quite dying yet, merely sleeping. He holds in his hand a paper that says "Go after them, Regina." For that is what he told me to do. He said later that I was "pulling a Regina", which means to go all out, never stop, and never give up. I am the woman with three faces. A plastic beautiful mask faces my husband. This is one of those plastic Halloween masks we used to wear as children. You know the type, with holes for eyes and nose. Your face became so moist underneath as you tried to breathe and yell trick or treat. These masks were cheap and well within the means of a poor girl. They did their job well-- no one knew what you really looked like. Beneath, unseen by all, is my true face. Looking behind me another face beseeches the nurse for information. This is the care giver's face, sad and distraught, trying to provide help. My pose is the same as one of the figures from Pablo Picasso’s Guernica. My body appears to be restrained from my husband. It is as if invisible hands are pulling me away.Above and in the outside hallway in the piece, a nurse is reclining in a chair drinking a soda and using Facebook. She is not engaged in the tragedy surrounding her.Above, within the room, is a clock with no hands...for time has stopped for us even as the rest of the world keeps going.Beside the clock is the light fromGuernicanow halogen instead of incandescent as we are entering a new age. The fixture barely lights the few feet around it. Darkness surrounds the space.To the left of the painting is a housekeeper. She holds the tools for her profession. The soiled linen bag beside her is overflowing. The lack of staff in a lot of facilities has lead to trash and linens getting to this overflowing state. The sign at her feet says, “Warning Slippery Slope.” It refers to the slippery slope of thehealth care debate.
- This painting was created for Ted Smith, Sr. Advisor, Innovations and Technology Transfer, ONC at U.S. DEPARTMENT OF HEALTH & HUMAN SERVICES and is entitled : “Something Sacred.” Ted’s Mother, Grandma Smith, sits in the center of the frame. Her face stares out at the viewer with the frank appraisal of those who are about to die. “Why?” She asks us as multiple pills drop from her hands. Her hospital gown covers her nakedness, whilst large chunks of her body have been removed. The holes that are left behind form the shape of a jigsaw puzzle pieces. On either side of the frame two medical professional view the X-Rays of Grandma Smith. Our left side doctor holds her x-ray to the light and decides with that piece alone she will prescribe a certain medicine. On the right side of the painting another Doctor views another puzzle piece upon a computer screen. She, too in turn, will prescribe another drug to solve the problems of this symptom. Neither Doctor will put the pieces together to treat the whole wonderful person that is Grandma Smith. She would have no reconciled view of her past or current treatments and the cycle of side effects and symptoms would be larger than any doctor appeared capable of reconciling. The drugs become a towering landscape that dwarfs the patient in its midst. Label upon label is affixed upon jar upon jar of medicine, and each label bares a question mark. All the while, the patient wonders why. Alone and afraid, she sits besieged as the pills encroach. So she suffers unnecessarily and expensively from the side effects of the treatment of a narrow range of disorders, all the while a rare and aggressive cancer was attacking her from within. But there is hope within the painting, the beams of the sun pour down upon the terrifying image. Those beams are made of the 1’s 0’s of binary code. This is the data cloud that can save us. This is all that is simple and transparent. This is Ted’s hope for us. Ted hopes for a time when someone else’s mother’s full treatment can be viewed in one place. He envisions a future where a computer can deal with the simple stuff, i.e. drug interactions, and Doctors dealing with the harder stuff. He sees a future where a person’s entire medical history is only a mouse click away; a future where the lack of one data set is considered tragic.
- This a painting created for Susannah Fox from Pew Research: Data Mote. It is as serene and concise as the data she presents. There is no mess or unnecessary details in this picture. It is all angles and planes. It is all shadow and light. In this painting there is a silhouette of Susannah behind a Japanese Screen. She is presenting a speech. She is telling the world the results of the newest Pew research as it applies to health. She is doing it in shadow. The data itself gets the spot light. Susannah is just the vessel from whence the data pours. On the right side of the painting a human figure stands. This is the data mote. This is the faceless patient. All unique identifiers have been removed. She/he/it has been scrubbed. This is clean data. But this creature seems rather sad as it holds onto the screen that shields Susannah from view. I do not think it shall peek though, as its head is lowered in submission. Behind this figure is a window. In that window, shines beams of sunlight through a cloud. This is cloud technology and social media and it is changing things. This cloud with its bright shinning sun is changing the data space. Our data mote now has a long shadow. Perhaps that shadow will tell us more about this creature than we would ever have known before. I love to think of data. I love to paint what data means. But sometimes the way we collect it and scrub it makes me sad. When I painted Apples to Apples last year, I looked at quite a few data sets. I was saddened to see areas where data could not be reported because the population that had the disease or injury was so small as to be identifiable by a hospital data set. This applies especially to rare disease. And I thought of Fred. Kidney cancer is considered a rare type of cancer. Was Fred’s clinical outcome scrubbed, because to use it would have identified him? And then I wondered had anyone thought to ask him his wishes? Did he want to be included regardless of possible identification, if it would save lives? I went to a Health 2.0 Meet Up in Bethesda not long ago where I asked about data donation. Can you imagine going to the DMV to renew your ID or your Drivers license and the staff would ask you two questions? Of course the standard, “Would you like to be an organ donor in the event of your death?” But what if that was followed by, “Would you like to release the content of your EMR/PHR for the purpose scientific study?” Can you imagine a world where HIPPA was used in a different way? I sign a HIPPA release. I give permission to share my information. Some folks phrase this as “waiving my rights.” I disagree. I am using my right to share data. I wonder how much our appreciation for data would change, if weren’t quite so clean? Humans are messy. Our lives and loves are messy. Not everything is black and white within medicine. To make a place for the patient story in the world of HIT, sometimes we have to use names. Sometimes we have to make personal. I think Susannah does her best to make data sets personal, given the limitations within the current form. I am glad I got to paint this painting for her and to sign it as an “Adult between the ages of 18-49.”
- This painting is homage to another work entitled “The Accolade.” Edmund Blair Leighton painted this piece in 1901. He was an English painter that specialized in the medieval genre and this painting has become synonymous with knighthood.In hispainting, a Queen with sword in hand bestows a knighthood upon a kneeling subject. In this painting “Subjects,” the relationship has changed from a depiction of ruler and subject to an exploration of care among equals. TheQueen has dropped her sword to her side and her other hand rests on the shoulder of a patient as she looks at him at eye to eye. Other patients/subjects gather round and each appear to be offering a green button to the Queen. This represents the Green Button Download. This is the concept that I, the patient, can share whatever health information I want. It can be scrubbed or not. I share this with you to help others and aid in the aggregation of data. And all I ask of you, is that you do the same for me. I ask you to share the data and conclusions that you have reached. I ask that we come to the table as equal partners in patient care and I will share with you. I may be dying, I may be well, but lets crowd source this. Lets put this in the cloud, lets open up my data set and that of all my willing brothers. Lets code-a-thon tell dawn and make greater strides in hours than is often seen in years. Thedawn breaks through the stained glass within this picture. A man named Craig Lipset is depicted by the stained glass design, standing sacred and still, holding a pill where his heart resides. Here is the new tomorrow shining through the colors of the rainbow button initiative. Where this light falls, health is revealed and shadows melt away. We are no longer subjects. We are partners in care. Let patient’s help, that is all we ask.