Art and Contracting and being an E-patient

Art and Contracting
Originally uploaded by Regina Holliday

When I was child I lived on a sleepy block on Elm Street in Sapulpa, Oklahoma. My father was a junk man who ran a flea-market stall to earn some cash and my mother worked as a hospital housekeeper. I remember endless days of sorting through piles of junk in the back yard. The sun beat down upon us as my sister, brother and I would sort nails into jars. We go through piles of shoes trying to match pairs. Would sift organic compost and fill bags of this ‘black-gold’ for selling in his flea-market stall. My father was a hard man to live with, but even he could see we would work more productively in the shade, so he began to build a shed.

The shed was a simple affair. It had four posts at the corners and one back wall. It was made from scrap lumber with a corrugated sheet metal roof and a workbench placed against the back wall. It was far cooler to work inside the shed, but the shed was not very pretty.

We lived next to a Church. Parishioners were always asking us to get rid of the junk in our yard and every couple of years a committee would come over asking to buy our house so they could raze the property and expand. Every time they were told no. We planted creeping vines, morning glories and honey-suckle all along our five-foot high fence. But they could still see our junk sometimes, and they could see our shed. Someone from the town came one day and told us there had been a complaint. Had we built a shed without a permit? Dad said he didn’t know he needed a permit to build a shed. Well, ignorance of the law was no excuse. We had to tear down the shed. My Dad was angry. And like the Incredible Hulk character I saw on TV, You would not like to see him angry.

Dad decided to make a statement. He took the wood and scraps from the shed and combining it with even more junk built a modern art installation. It was a cart to Calvary made of trash wood and metal and topped with a large cross and he parked in our front lawn in plain view of the Church. It made the front cover of the Sapulpa Herald. The neighbors couldn’t do a thing about it, as there was no zoning code that forbade junk-art installations. My father had made his point, and my siblings and I went back to sort junk in the simmering sunlight of our backyard.

Many years later, I had the opportunity to help open an art store as a satellite location of The Jayhawk Bookstore in Lawrence, Kansas. I remembered the lessons learned in childhood. I would get the necessary permits. And because we had a tiny budget, I would act as the building contractor. I was the mother of a one year old at the time and was the store manager of the Jayhawk Bookstore, but working with my art dept. assistant Sean Barnes we handled the general contracting for the location. We were on location daily and sometimes nightly. We oversaw and worked with the plumbing sub-contractors and the electrical subcontractors. We finished on time and under budget. Afterwards, the electrical contractor said he had never seen his team work as fast as it had under our watchful eyes. We had learned very quickly that Sean or I needed to be on site to communicate goals and facilitate a speedy construction time-line. We did not know that much about fire-code regulations and ADA accessibility guidelines when we began, but we found out you can learn about anything fairly quickly if you are determined and a have a deadline.

I also had to work within the signage ordinances for business in Lawrence, Kansas. Even Wal-Mart wasn’t allowed its customary large pylon sign in this town. How was I to make an interesting anchor location that sold art supplies with limited signage ability? Well, I could do a really large faux stain glass window painting coving a swath of windows three by fifty feet. This wasn’t additional signage: this was art. The non-traditional use of high windows and paint was covered in the July 2000 issue of CNA (Craft and Needlework Age: a periodical of the craft/art industry).

Yes, I had learned my lessons well.

This morning I woke up to find the Washington Post at my door and on the front page of the Metro section was a picture of mayoral candidate Vincent Gray standing behind a fence. You can read the full article at http://www.washingtonpost.com/wp-dyn/content/article/2010/05/23/AR2010052304072.html?hpid=newswell
The article explained that Mr. Gray has a fence on his property that was built without the proper building permit. Mr. Gray had assumed that his contractor Pete Schultz of Eastern Grounds Maintenance had obtained the required permits. This article had me thinking back to art installations, building permits and what it means to be an e-patient.

Sometimes, when you want a job done right, … you have to actually talk with the people on the team. And sometimes to get the attention you need you have to think outside the box.

It is easy to give up the reigns of our own health care and sub-contract responsibility to our doctors and nurses, but when the day is done it’s our body and our record. We have the ultimate oversight authority in our lives and it is really important that we do not give that up. There is a reason for informed consent. You should know what is being done to your body and decide if this is the right path for you. On the flip side Doctors and nurses need to consult with the patient before building any “fences.” I cannot imagine going to a permitting office and accepting a “verbal” copy of the permit. I want the hard copy, I want to read it and I want to post it.

I know building permits exist for a reason. Can they be used in petty ways to push personal agendas? Yes, but their ultimate goal is to protect our citizens. I love that Atul Gawande, in his book The CheckList Manifesto, compares medicine to the construction industry. He writes, “We add somewhere around seventy thousand new commercial buildings and one million new homes each year. But “building failure”- defined as a partial or full collapse of a functioning structure- is exceedingly rare.” Dr. Gawande continues in the Chapter: The End of The Master Builder to relate that when an error does occur it is the result of a failure to communicate.

I bet Mr. Gray is wishing he had checked on those permits. He has gone through a five-month headache about that fence and after paying for its construction he might have to remove it. What we have here is a failure to communicate. In this case, it could cost a mayoral candidate money and prestige. In the world of healthcare a failure to communicate can cost you your life.

"Apples to Apples" by Regina Holliday

Apples to Apples by Regina Holliday
Originally uploaded by Regina Holliday

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 image itself depicts the importance data access, but as an artist I wanted more. This painting was created en plein air at the site of the hospital it is depicting. I stood within the constant stream of passersby, as if I too, were now a data mote. Upon occasion people would stop and ask a question. I would infer-face with them for a moment before they would walk away. I existed only to bring them the data in a way any patient could understand.

That experience was captured on video by Tessa Moran and Ben Crosbie with music by Paul Hanna and can be viewed below or here.

HCAHPS Visualization from Eidolon Films on Vimeo.

A Birthday and Hornet Day

The hornet in 73 Cents
Originally uploaded by Regina Holliday

I have been blessed with a birthday that sometimes falls on Mother's Day. Fred and I joked that he didn't have to buy me many presents as our anniversary was the day after Christmas and my birthday was often on Mother's day.

Last year my birthday was on Mother's Day and Sundays were the days we took the boys to see Fred. We could celebrate both right in Fred's room at the Rehab center. I cut him a piece of cake and we all got in my Mother-in-law's car for the drive to Shady Grove.

When we got there, Fred's eyes were focused on the ceiling. There was a hornet in the room. We had already been dealing with ants coming in through the window and now it was wasps. I went down to the nurses station to complain. They said they would send a janitor. We waited 45 minutes and no one came. The cleaning staff had left for the day. I tried to get it myself a few times, but I was so short I could not reach it.

I went back to the nurses station and asked for help. The nursing supervisor came. She stood on a chair and tried a few sweeps with a newspaper. She only succeeded in making it mad. She then got off the chair and told me she couldn't get it and needed to go back to the nurses station. She left and my family looked at me. My husband looked at me in resigned defeat. My two little boys looked at me with the fear little ones reserve for flying stinging things. My mother-in-law just stared.

I picked up a Newsweek Magazine with the Starship Enterprise on the cover and began to climb. I climbed on chairs and bedside tables swatting at that wasp. I chased it around the room. How dare it invade our fragile peace. How dare it worry my husband who was lying in a bed he could not arise from. How dare it scare my children who would only see their father for a few hours tonight. I climbed and swatted. Finally, climbing across the guest bed, I hit it. It fluttered its last and fell to the floor.

My oldest son Freddie let out a whoop. Three year old Isaac laughed a joyful giggle. I spun around with them in the center of the room as we did a happy dance. Fred looked on with a smile. We had killed the wasp. We could do this one thing to make this horrible time a little better. After our giggles subsided, we stayed a few hours and talked. Fred never ate his piece of cake. It was nine days before he went to hospice and he did not feel much like eating.

Months later, I showed friends the design sketch for "73 cents." They asked about the hornet. They liked the picture, but the hornet did not make any sense. They recommended I leave it out of the final painting.

I told my son Freddie about their recommendation that I remove the hornet. He was immediately upset. "NO, Mommy, NO! You could leave out everything else, but never the hornet." He looked at me with those striking blue eyes brimming with tears and said, "That was the special day. The day you killed the hornet. The day you showed me everything would be alright. Isn't that what the picture is all about? When you see something is wrong, you do something to change it."

Today, I went over to the painting and I stared at the space above he door. There is a Hornet in the picture. Freddie was right. You could leave out anything else. The hornet meant everything.

Data Cloud

Data Cloud
Originally uploaded by Regina Holliday

This is the jacket design for Roni Zeiger from Google health. This is my interpretation of Transparency in Health Data Access.

A little Blue

 

Last week I was teaching pre-school students about seascape paintings. They had already done landscape work so they knew the basic terminology. I reminded them of the summer landscapes we did. I said, “In a summer landscape the sky is blue, and it is the top part of your picture and the bottom part of your picture is grass, and it is green. The grass and sky meet and form the horizon line at some point in the painting.” The kids chorused along with the words blue and green as I spoke. “Today we will do a seascape. The sky will be …” “Blue,” chorused the children’s sweet voices. I smiled upon them and continued, “and the sea will be …” They paused for a moment and shouted, “BLUE!” Then they burst into giggles, because even they knew you would not see the horizon line if everything were blue. We all laughed for a moment and then I began to explain there are many types of blue… 

 There are indeed many types of Blue. This is the month of May. This is the month I was born. It is the month of Mother’s Day. It is the month for rummage sales. This is the month I met all of my health 2.0 friends who have been such a buoy in my life without Fred. It is the month I placed the first painting in the Medical Advocacy Series. It is the month Fred agreed to go to Hospice. This month means many things to me, and a few them have me feeling Blue. I always looked forward to May. As a child, my neighbor Mrs. Johnson would cut a large bouquet of peonies as gift for my birthday. I so looked forward to those flowers. I looked forward to the cards that would come from my aunts and uncles. I anticipated the joy of celebrating my birthday. I remember the day itself was never quite as wonderful as the anticipation of the day. I loved looking forward to things. I still do. I am constantly involved in projects that I spend weeks or months visualizing and anticipating. Oh, I love them when they are complete, but the true joy is in the anticipation in the process. This is the breathless excitement of a child at Christmas, the anticipation of joy. 

 So with great confidence, I can say there is no worse grief than anticipatory grief. This is the grief that drags you down and runs like a 24-hour movie in your mind. This is the grief that makes the last days with your loved one not bittersweet, but anguished. It almost feels like you have turned into a computer with two programs running and those two programs are diametrically opposed to one another. Why did I beg my late husband Fred’s doctors for his records? For the first time in my life, I desperately wanted to be wrong. From what little info I had gathered combined with my internet research, I knew Fred had only a few months to live. I vividly remember Fred’s hospitalist telling me I was not behaving typically as I beseeched him for a prognosis. I should be crying and in denial, as he assured me his wife would be if our situations were reversed. 

 I read about the stages of grief: denial, anger, bargaining, depression and acceptance. I went through these stages at a soul crunching speed during Fred’s illness. I loved him so and cared for him daily and accepted in my heart of hearts he was dying. I felt schizophrenic in my love. How could I accept this? I remember posting the “Get Well, Soon” cards on Fred’s wall with such a sense of sorrow. I remember feeling like I was living a lie every time I accepted someone’s well wishes. I was splitting into two and I wore a mask to hide my sorrow. 

 Of all the types of blue I do think anticipatory grief is the hardest to cope with. 

 This is grief that is very lonely. You are the crest of the wave and everyone else is so far below and it so very scary to know soon you will crash upon the shore. Fortunately, most of life is not lived in a seascape. We are not often surrounded by Blue. I am now a year later in my grief. I live amongst a little bit of Blue. It is often lonely and I miss Fred. I miss our conversations most of all. After art class, I was cleaning up the room. I looked down at all the children’s brushes. The brushes and table were covered with dashes of blue. It was beautiful in its way. I had to take a picture. Next week, we will move on to forest scenes and warm earth tones will abound. The blue tones will slowly be covered up in time, but here and there I will still see them. They will be there to remind me of living life surrounded by Blue.

"Wonder Twin powers, Activate!"

CIMG0146-1
Originally uploaded by Regina Holliday

As I child, I would often watch Saturday morning cartoons. I am a great fan of Marvel Comics, but I must admit I did watch a good deal of The Superfriends. This cartoon was filled with iconic heroes of the DC Comics universe such as Superman, Wonder Woman and Batman. As the series progressed, the show introduced two new sidekicks: the Wonder Twins. They were not quite as powerful as the others and were young and sometimes rather annoying. Zan, the male hero would turn into any form of water. Jayna, the female hero, would change into the shape of any animal. There was a catch though. They had to work together to effect change. They would bump their fists in the air and proclaim, "Wonder Twin powers, activate!"; only then would they change into their desired forms. Even though I watched the show for years, prior to writing this I could not remember their names. In my mind's eye they were only the Wonder Twins.

On Tuesday April 20th I testified as a member of Panel 1: "Meaningful Use of HIT in the Real Lives of Patients and Families" at the HIT Policy Committee Meaning Use Workgroup. Dave DeBronkart testified on Panel 2: "Incorporating Patient Generated Data in Meaningful Use HIT". Most of the speakers in the room had been working in medicine or HIT for many years. If you looked in the agenda you would see a presenter's name and where they worked. There was an amazing amount of talent and work experience in the room. Representatives were there from Epic, CVS Minute Clinic, Johns Hopkins University, Intel and several other parties. First you saw their name and then you saw where they worked.

If you looked at my name, it said, "Regina Holliday, patient voice."
If you glanced at Dave's name it was: "Dave Debronkart, ePatient Dave." We joked beforehand that we must be the Wonder Twins. Dave is seeping throughout the Twitter-sphere promoting participatory medicine. He is part of the current that is washing away an old system of a patriarchal division of labor in medicine. And I will change into whatever form is needed to bring patients' stories to light. I am the quiet painter. I am the outspoken critic demanding access to the record. I will turn into whatever animal is needed to effect change. Together we are powerful. Patient voices are strong when they call out in unison demanding change.

Regina Holliday, patient voice. It was a rather ironic title in view of my testimony, for I am not very patient anymore. I stated in my testimony, "In closing , I recently saw an ad from the American Hospital Association promoting adoption of electronic health records using an 'incremental and realistic policy'. The images in the ad contained doctors and technology, but there was not a patient to be seen. When I speak of HIT, I am speaking about lives, not livelihood. Patient access can save lives; it can stop soul-crushing fear. I have spent this last year fighting for information access, and I say the time for incremental change has past. This is the time we demand our rights to see our data."

I listen to my friends working in patient safety and my friends in information technology, and I hear. I hear the part of the tragic story where information access could have changed outcomes. I hear how experiences could have been better and people could have lived. I think of how different the medical world would be if instant access was the norm rather than an ideal I fight for.

I remember many years ago getting ready for my wedding and check-proofing the invitation. I remember combing over the wording trying to make sure it was very clear. The print shop clerk said they would not print it without it my authorization. I remember many IEP meetings for my son where I went over pages and pages of documents correcting errors and amending the record so my son would have the best education opportunities available to him. I remember proof-reading ad-copy for Jayhawk Bookstore when I managed it. The paper would not go to press without my sign-off on the ad.

I remember all of this, and I remember siting in a hospital for days begging to see my husband's medical record.

Why are we competent and able when it comes to our weddings, our education, and our jobs, but suddenly when it comes to data about our lives, we are not given access? I sit crying at the computer screen when I think of Sorrel King. Do you think she would have missed the order for oral hydration for her young daughter if she had had timely access to the record? What if the hospitalized patient had a daily treatment summary instead of only an after-the-fact discharge summary? How many lives would be saved? How many Freds would have the catheter placed before infection? How many Josies would avoid a fatal dose of pain medication? How can we wait any longer?

Comic book super-heroes and patients may seem to have little in common. Perhaps you think it wrong to put them together in a blog post. Death and ink, paint and sorrow: they sit side-by-side in life and cannot separate even when the subject is deadly serious. We need our heroes. We need those people and patients who will stand up and speak against the status quo. I recently read a very good article called Story Power. Here is the link. It explains this relationship in depth. Fred would be so proud. He was a firm believer in the power of stories. He would be so glad to know that patients' stories are changing and saving lives.

I am glad Dave and I can help create a better world for patients. I am glad that we can activate change. Patients may seem a little annoying at times, but we can help save the day. We are a vital and important part of a much larger Justice League.

Access to the Electronic Medical Record

Access to the Electronic Medical Record:

A Patient and Caregiver Perspective

Testimony before the HIT Policy Committee Meaningful

Use Workgroup, April 20th, 2010

Regina Holliday, Blogger and founding Artist for the Medical Advocacy Mural Project.

Advocacy Time Line: http://www.open-health.us/topics/reginas-advocacy-timeline

Blog: http://reginaholliday.blogspot.com/

email reggieart123@yahoo.com

“Let’s change the face of Health Care”

This is my husband’s medical record

from his admittance into hospital #1 on March 25th through April 22nd 2009. It also contains transfer summaries and MAR’s from hospital #2, a Rehab center, hospital #3 and hospice. In addition, it contains contact info for two radiation facilities and two ambulance transport companies.

For two months this binder went everywhere my husband Fred and I went. This information about Fred’s kidney cancer was incredibly important: this was our life preserver keeping us afloat in a confusing menagerie hospitalization.

I fought for access to this information for weeks. Hospital #1 had a fully implemented an EMR system throughout. All data was kept in a computerized storage. I was told by staff that we could not access the electronic record. I was told it would be a 73 cent per page charge and a 21 day wait to get a paper copy of my husband’s medical record. We were left without any thorough understanding of my husband’s diagnosis or treatment plan even though he was continually hospitalized. On Saturday April 19th, after three weeks of only palliative treatment, my husband was told he was being sent home on a PCA pump by the oncologist in charge of his case. He was being sent home to hospice. At that point, my husband told me to go after them and try to get him care.

After fighting for transfer for five days, Fred was transfered to another hospital on April 22nd 2009. He was sent with an out of date and incomplete transfer summary and MAR. No cd’s or films were included in the transfer packet. Fred was denied care for six hours at the new facility as staff tried to cobble together a medical record using a phone and a fax machine. Nursing staff could provide no pain medication nor food while they tried to recreate the record. My husband was in pain and was very anxious, but there was very little I could do for him. I went to the local pizzeria to get him some food, but that was all I could do. The next day Fred’s new doctors sent me back to the original facility to get the ENTIRE medical record and CD’s and films. The old hospital printed out the record in 90 minutes. I brought the record back and showed it to the new doctors. They looked at it briefly and handed it back to me saying, “It is safest with you. Fred might be treated at many facilities, but if you keep this with you, you will always have access to the record.”

I read the entire record in three hours. I was amazed at how many errors it contained and astounded by the apparent lack of communication between staff members. I found many instances where if I could have just read the record Fred’s care would have been so much better.

Why do we have more transparency in special education law then in medical care? Why do we have more access to information on a box of Cheerios then on a medical chart? Why isn’t there a medical counterpart of the Freedom of Information Act?

-Regina Holliday May 2nd, 2009

As our journey in medicine progressed, we realized how important it was to have access to information. It was also important for that information to be clear and easy to understand. Working with my husband I began designing a visual medical chart based on his disease using the nutrition facts label. The goal was to create an easy to understand chart that an EMT, Tech, caregiver or nurse could glance at and see the extent of his disease. Where could this man be injured just by touching him?

Fred lived for 56 days after we got a copy of his medical record and there was not a day I did not reference it. At the second hospital, it was vital document that provided a history of care. At rehab, when I was concerned about Fred’s hemoglobin level, the record showed he needed a blood transfusion every 10 to 14 days. My ability to show a nurse this record allowed Fred to get a stat CBC test. This test lead to a immediate transfer for blood transfusion. Before transfer I requested my own copy of the MAR, this came in very handy when the admitting hospital lost its own copy during transfer. When our only care option became inpatient hospice, the medical record provided a great deal of history upon admission. We used the record again and again throughout our medical journey.

Why am I speaking to you today?

This is why...

Because we are all patients in the end. We all deserve care and compassion. We all deserve access to information.

1. An expert on one

A hospital environment is a scary and strange place, but it is far more scary if you do not know what is going on. I went to a small health 2.0 meeting on May 27th 2009. The people attending that meeting asked me to focus on what was the worst thing that had happened through this entire tragedy.

I told them the worst thing we experienced was lack of access to my husband’s data.

What role does Meaningful Use in HIT play in the lives of Patients and Caregivers?

Why did I want complete and timely access to the medical record? I am regular person. I worked retail for 16 years and I don’t have have any college degree. I am the mother of two wonderful boys and was a loving spouse. I do not have a background in medicine, but I still wanted access to my husband’s record. As many ePatient advocates state, “I may not be an expert at my husband’s disease, but I am an expert when it comes to my husband.” A caregiver is a vital part of the medical team. She or he has in depth knowledge about the patient that can be utilized to provide the best care.

2. The caregiver and patient as partners

We also must be viewed as two parts that make a whole, be it parent and child or husband and wife, this caregiving partnership is a vital part of the medical equation. People may laugh at couples who finish each others sentences, but there is a truth within the stereotype. Close partners act as information storage for each other, often they diversify based upon each other’s strengths and weaknesses. My husband was a font of knowledge about the history of film. I handled the more mundane things like the children’s vaccination record and our son’s IEP process. Yet my husband was verbally told while alone that he had “tumors” and “growths.” Not only was this information emotionally jarring and therefore very hard to process, it was an ephemeral spoken diagnosis told to the partner with very limited medical understanding. HIT access to the test results would have been a far kinder fate. With access to a written record my husband I could have studied and researched the diagnosis in a timely fashion and made an informed decision about the way the my husband chose to respond to his disease; instead we spent weeks waiting with no access to information and were not a vital part of the decision making process.

3. We will do the job that is not being done.

Any system that denies information access to a caregiver or patient is not providing the best care for said patient. After spending hours reading my husband’s medical record, I asked the nursing staff, “Which employee reads the entire medical record of a patient?” They told me no one. They said the staff read the face sheet and the most recent pages, no one reads the entire record. This is one of the ways an epatient or patient advocate can help the medical industry. We will read this data, because this is our life reflected within these pages.

4. Research isn’t just for students...

Once patients and caregivers have access to the electronic medical record, they can use that access to find out information about their disease. They can fully research their disorder and find out the many methods of managing their medical condition. They can be part of the treatment team and using the internet and search engines find information that was once only available in remote medical libraries. Using this information they can make a truly informed decision. It is important for family and medical professionals to remember that the choice of what to do remains the right of the patient. In the case of chronic illness and terminal disease it is doubly important for the patient to have full access to the facts in order to make their decision on the direction of treatment.

This card was designed by Jeff Rounds, one of Fred’s childhood friends.

It was sent to Fred while he was in hospice.

It shows a perfect visual image for the role of social media in HIT

5. So now we know.... who will we tell?

Another amazing benefit in access to the electronic medical record is how we share that information. Due to easy access to online patient communities we can have real time information on cutting edge treatments throughout the world. In communities like ACOR, Association of Online Cancer Resources, patients will often sign off on a post with their name and an abbreviated history of their disease. Patients and caregivers use their Facebook accounts, Twitter accounts and blogs to address the particulars of their disease and to solicit help from an army of many. In this social media world help is closer than the classic “six degrees of separation.” A few hours after I Tweeted requesting help from ePatientDave, I was speaking to Dave’s oncologist about my husband’s kidney cancer. This kind of instantaneous access was unheard of in an age before social media. We are living in a information age and we expect and demand access to our personal health information.

These are the reasons patients and caregivers need access to EHR’s and EMR’s and HIT. We are part of a world that is letting go of the paper transfer and embracing electronic communication in every aspect of our lives. We are seeing the benefits of information technology in online banking and our daily bus commute as we hold our smart phones in our hands and access the medical aps. Information access is becoming the great equalizer. Whether you live in small small rural town or in an apartment in large city, you have equal access to information and that is.... empowering.

In closing , I recently saw an ad from the American Hospital Association promoting adoption of electronic health records using an “incremental and realistic policy” The images in the ad contained Doctors and technology, but there was not a patient to be seen. When I speak of HIT, I am speaking about lives not livelihood. Patient access can save lives, It can stop soul crushing fear. I have spent this last year fighting for information access and I say the time for incremental change has past. This is the time we demand our rights to see our data.