The first mural is placed

The first mural was placed at 4:30 this morning. If you would like to see a picture of it go here.

This was a poem I dedicated to my husband Fred Holiday. I wrote this poem in 1993. It was one month before our wedding in Breckinridge, Oklahoma. I thought I would post it tonight before I place the first mural in my medical advocacy series. I think it pretty well sums up my love of art as well as my love for my husband.

The Cleaning of the Brush

by Regina Holliday

They say that life defines art,
Or that art defines life.
I’ll believe the latter,
Though others may confuse.

I’ve known art in my life
As others have known sight,
And have used it offhandedly
As others use their senses.
Sight is not appreciated
By those who’ve always seen.

As a child I felt it moving,
Outside cookie-cutter drawings.
Raw, magnificent, yet undefined,
It fluttered…impotent:
A bird without wings…
Until the brush.

Oh! I must have been a child,
And it must have been fun!
I must have used tempera,
But I really don’t remember,
Not a thing,
But the brush.

To paint without fingers,
To carry out a line,
To a child what a wonder…
Who sees within the strokes: a form.

Yet, I was a child,
And though I felt the beauty,
I did not grasp the task;
For the brush was made of plastic,
To paint with poly-bristle,
Refrigerator art.

No. It wasn’t the creation,
But the making of amends.
This set my soul on scaffolds
From whence masters dare to fly.
It is control that is seductive
The power of the god son…
Call it discipline or order
Or the cleaning of the brush.

My father was a man of his word,
And of his bottle;
Although sometimes one deluded the other.
But within my scant good memories,
Digs my father through a dumpster
To keep a promise to his girl.

Behind a school there was an artist,
Destroying his creations
And throwing out his tools,
Perhaps lackluster in his art.
My father dug through trash for
32 grimed paint brushes and a paint box.

He slaved for days to clean them
With sandpaper in hand,
With turpentine and soapy water,
Until they all came clean.
So what if bristles missing?
32 paint brushes and I still have some today.

But being young, my diligence
At cleaning was sporadic.
Oft I left my brushes
With paint dried in their hair,
Or soaked with soggy bristles,
And rusting metal parts.
Until I met the teacher
Of the scenic side of art.

She taught me how to clean them.
With her hands and soapy water,
‘Till the water would run true.
She taught me how to mold them,
How to shape them and to dry them.
Think of bathing a newborn she said.

I continued in instruction
Still cleaning brushes as was taught.
Time passed, and I still painting
Looked up from my creation
To a man, my future husband,
Who in a year would call me wife.

I taught him the creation
As a Preacher talks of God,
And taught him absolution
Was the cleaning of the brush.

I guess we fell in love
While painting out our demons
On five by fives of canvas
That next week we’d cover up
Flirting at the deep sinks,
Cleaning out the brush.

I later met his parents,
And passed in depth inspection,
With my talent and our love,
With a great help from above;
And for teaching now his mother
The cleaning of the brush.

Some say the starving artist
Is a martyr for his cause.
That the master dies from slaving
On the ceilings of Church halls.

They dare to scream,
“He gave his eyes,
His ear and mind,
His life forfeit,
And died alone…
For naught but pretty pictures.”

Yet, I respond defiant.
For in paint brush driven paths,
I met my husband, lived my life,
Wandered as a child in fright,
And felt the strokes that soften pain,
But not from any human hand.

Yes, I’ve known art in my life
And have accepted all night painting
With bleary eyes and tears,
But indeed without regret.

As I stare down at my hands
Hardened, chapped, and cracking,
I cannot help but thank the art
That tears at hands and heartstrings.
I cannot help but clean the brush
That adds value to my life.

11/20/93

Please read this post.

Today I met with some of the people who have made it their life's work to fix the health care system in the United States. They are so wonderful and courageous. It was great to speak with them about these things. The storm of change is coming. Thank you to Christine Kraft for organizing the meeting. Thank you to my husband Fred for being willing to part with the hours we could have spent together as his time to leave is nearing. What a loving giving man. He really is selfless.

I also wanted to let everyone know of the benefit that is being hosted by Maryland Delegate Wendel Beitzel for my Husband's Medical Care. There will be a fundraiser dinner/auction held on May 31st at the Avilton Community Center at the Avilton/Lonaconing Road, Garrett County, MD 21539. If you have questions contact Wendel Beitzel at 301-616-6951. Please spread the word in Western Maryland.

The first mural should be placed this weekend...then the reporters begin their work.

Thank you all and Goodnight-Regina

I wanted to let everyone know my husband entered hospice care on this Tuesday past. His pain is well managed in hospice. For the first time in nine weeks I can say my husband is not suffering so much. We have spent the last nine weeks bedridden at five different hospital facilities, and went through 45 bed to gurney to ambulance transports. Fred can now talk, eat and and drink. Mostly he sleeps.

On the medical advocacy front, the first mural should be going up this week. I will keep you posted on the progress.

from e-patients.net

“Meaningful Use”: a pivotal definition for new-wave medical records systems

by e-Patient Dave on May 10, 2009

I’ve struggled with what to say about this subject for two weeks, because I want to “get it right” but it’s vast. So I’m giving up any hope of being comprehensive, and I’m just going to say what little I know, and what I think, and let any discussion happen from there.

The issue

We (the US, and probably the world) are at a pivotal moment in healthcare, a turning point. The direction we choose now can have a lasting effect on how well healthcare works in the coming years – even for the next decade, I suspect. So as we consider this, I suggest that we think not in 2010 terms, but 2020 terms.

The issue at hand is the definition of “meaningful use.” You’ve probably heard of the $19B in the US “ARRA” economic stimulus package that’s set aside to encourage adoption of electronic medical records systems. (A Google search for “HIT stimulus ARRA billion” produces 25,700 hits.) Medical practices that have EMRs and put them to “meaningful use” will get higher reimbursement from the government.

When the stimulus package was passed by Congress, the term “meaningful use” was intentionally left to be clarified later. See David Kibbe’s commenthere for three items that were specified. And here we are: the work is now underway to define and clarify that term. Many meetings are happening in Washington to get this done.

I believe, and many basically agree, that meaningful use should be defined to include full patient access to their data in EMR systems. Here’s why.

First, let’s look at the world for which we’re designing: 2020.

2020: The world for which we’re planning

The systems we design today will be in use a long time from now, so I suggest we look at the world as it will be in 2020, and how we’ll be using these systems then. What does that world look like?

• We will all be ten years older. You will be ten years older; your children will be ten years old; your parents will be ten years older.
• The internet will be ten years more advanced. If you think back to the dial-up world of ten years ago (1999), when browsers were just five years old, there’s been a huge amount of progress … and, significantly for this discussion, a lot of it’s related to having more access to our personal data online: banking, plane reservations, shopping, and more. Think how that will change in the next decade.
• Handheld computers (smartphones) will be ten years more advanced. (More advanced? Heck, the iPhone was only introduced 28 months ago.)
• Connected e-health devices will be out of their infancy: WiFi blood pressure monitors, bathroom scales, glucose monitors, you name it. It’s fairly certain that by then we’ll be able to use cheap devices that send routine data to some central storage place, where smart software (your choice of smart software) can send out alarms or reminders, your care team can view it … and you should be able to view it, too. And make notes on it.
• Doctors will be ten years older. Fast Company magazine’s Doctor of the Future Jay Parkinson will be middle aged (Ha!). Our oldest doctors will be retired (or dead). Today’s youngest doctors will be well into their careers and owning practices; a new generation of providers will be practicing who were born after Amazon.com (1994). They have never known a world without household email. They expecteverything to be online.

In this world, what kind of data access do we want? We need to build that into our design choices now. Why?

The product development cycle

It takes time to plan, design, code, test, install, and train on systems. And once that’s done, the decisions that are made will be with us for a long time – until vendors decide to go through that whole process again.

Sure, a lot of code gets written and updated fast. But if I’ve learned one thing about healthcare IT since I got in the e-patient game, it’s that healthcare systems are big, complex, and slow to change. These are not things that get re-engineered frequently.

Docs/nurses etc: how old are the systems you use today? Some are new, but many of you are using systems designed in 2000, right?

And here’s where regulatory requirements come in.

The impact of regulatory requirements

Some regulatory requirements profoundly affect product design. If a law is passed saying you can get a tax credit for a computer where the “Q” key is colored orance, vendors will offer that, because customers will buy it. Similarly, if a law requires that a system have a particular feature, people will only buy that, so vendors put it in the product plan, right from the get-go.

That’s the case with HIPAA: many systems are required by the government to be HIPAA compliant. So vendors design accordingly.

And so it is today with the definition of “meaningful use.” Providers will only receive stimulus money if the system they choose meets the definition of meaningful use. So the definition we choose today can have a profound impact on what you can do with your data far into the future.

My principles

• Patient is a first-person word. Your time will come: someday it will be you, your child, your mother, your spouse on that hospital bed or at that roadside being tended by an EMT. The way to think about this is in the first person: when that time comes, what should be possible with “my data,” not “patients’ data.”
• It’s my data. It’s my life that’s at stake. I have a right to seek the best care in the world, and if that means exporting a copy of my data from your system and taking it somewhere else, I have a right to do that..
• Corollary: No more proprietary captive data. (Edited 11:20am EDT) We must put an end to the era where a system provider thinks the data they collect is their property. Lives are at stake. Whose data is it, anyway?
  Vendors must adapt to a world where they earn their margins by creating on-going value, not by holding data captive. This includes images (CT scans, MRIs, etc, at full diagnostic resolution) as well as lab results and everything else.
  Added 11:40am EDT: My opinion is that “whose data is it” applies to providers as well as system vendors. If you haven’t yet, considerwhat happened to Web guru Doc Searls last year when he couldn’t share his scan data with another MD.
• Enable participatory medicine – doctor-patient collaboration. Make it possible for each party to view the same data. (Ideally, I’d like to enable collaboration tools such as online discussion of my medical records – but that’s beyond the scope of this post.)
• Let each constituency say what works for them. Patients shouldn’t say what doctors need, and doctors shouldn’t mandate how patients should and shouldn’t describe things.
  Warning: experts on both sides should be able to comment on / warn the other about apparent errors. Docs must be able to say “Whoops, you overlooked this,” and patients must be able to say “Whoops, you overlooked this.” (See related discussion of “who will vet the vetters” in “Medpedia: who gets to say what info is reliable?”)

Recommendations

These are my personal recommendations, not necessarily those of e-patients.net or the Society for Participatory Medicine. (Hey you out there - what do you think? Participate in the comments! You count!)

• Grant patients full access to their medical records.
  Exception: the best minds I know have said doctors need the ability to store private notes, and I can grant that. But I want full access to all my data: all the numbers, all the test results, all the radiology reports, everything.
  Added 11:45am: Among other things, the records might contain errors, and we can help clean them up.
• Let me export my data and take it elsewhere. I have a right to seek the best care anywhere, even if it means going somewhere else. Systems must be designed to allow exporting data (and, of course, importing data). I know there are lots of details to be worked out. Let’s just start with this principle: it’s my data.
• Enable the most able. Don’t dumb down the data. Allow different levels of viewing – simple, medium, expert. (Hint: let each group participate in creating the language, and let users vote it up or down.)

---

This is our golden moment. It’s not fundamentally hard to give patients access to their data, not any more than it’s hard for banks to give us access to our banking information. It took banks two or three generations to get it right, but the technology exists, and now it’s widespread. Let’s encourage EMR vendors to get it right on the first try, by defining meaningful use to include giving us full access to all our medical data.

A great organization called the Markle Foundation has recently issued a paper that lays out their thoughts on this issue. I like it, and so do the rest of the people on e-patients.net who’ve voiced an opinion in the back room. More on that Sunday.

update

This has been a busy week on the medical advocacy front. Our story is being floated around several news agencies, and it is just matter of who would like to report it first. The first mural will be placed in Pumpernickels Deli on Connecticut Avenue around the 5400 block. I will be determining the size this weekend, and it should go up next week.

I continue to search for more walls for murals. I also will need more patients who are willing to come forward with their charts. Each mural will represent a person. I would like the actual information and vitals. The name of the individual can be used, or if privacy is desired I can write "Jane" or "John Doe". Let me know if you or a loved one would like to be a patient image.

I am trying through some of my contacts to talk to the folks in Congress who are helping shape the new health care agenda. The litany of things that went wrong with my husband's care takes pages and pages to list.

On a side note, the EMT transport crew and I spoke during my husband's transfer for radiation. He shared his contempt of the ER department of the hospital we were in from 3-25-09 through 4-22-09. He said they leave patients out in halls, lose their information, and generally don't care. The EMT/Firefighter said he would rather leave a patient at any other hospital in this part of Maryland.

I will post again soon. -Regina Holliday

Open Access to Publicly-Funded Research: Let Them Eat Cake?

In response to this post entitled Open Access to Publicly-Funded Research: Let Them Eat Cake? I posted the following:

I had the experience of not being able to see my husband's charts while he was in the hospital with stage four kidney cancer. Everything is on a computer and inaccessible to patients. I went down to medical records. I asked to see the chart, and they told me it would be twenty-one days and cost seventy-three cents per page. Twenty-one days is a very long time in stage four kidney cancer. I had to have them xerox my medical power of attorney request before they would even begin the process.

Because of a very bad transfer paperwork snafu I got a copy of the chart on 4-23-09 without having to pay for it. For individuals like me who don't have very much money the requirement to spend seventy-three cents per page is a hardship when the chart is very long. I would have probably had to pay over $100 to see my husband's chart.

Please join this group that is fighting for medical advocacy. Please sign their petition.

National Health Council: Advocate for Change

We will fight the good fight. Regina's USA medical advocacy 2009

Most of you are are aware that my husband, after two months of fruitless doctor visits and two trips to two ER's, was diagnosed with stage IV kidney cancer on Friday March 27, 2009. We plunged into the nightmare that is modern medical care in the USA. I found out I needed to be with my husband constantly to make sure he received even basic care. We were going to be released to home or institutional hospice after a month of only palliative treatment. We fought for a transfer to another hospital for a second opinion. We are now getting treatment. This has been a horrible experience.

The more I talk to other people the more I hear the same story. "The doctor did not listen." "The nurse did not read the chart." "The hospital kicked us out because our insurance was running out." It goes on and on. I ask all these wonderful people what they did to right this injustice, and the response is the same. "I was too tired." "It was too hard." "I was so sad." "They just got away with with treating us this way."

This has to stop. This is not right.

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?

People tell me just concentrate on your husband, your family. Too many people have quietly done that. Too many wonderful fathers, mothers and children are gone. Too many graves have flowers on them. I will fight. I will not stop. I will not be silenced.

Today I had an epiphany. You might have seen my mural work on the side of the American City Diner. I painted all those famous stars from the 30's through the 50's about six years ago. I also painted the mural of the children reading at Child's Play. I painted the St. Jude's Hospital Thanks and Giving mural on the old Hects Building about five years ago. I would like to do a new mural series. I want to do a Medical Advocacy series. I am doing a design based on the food packaging Nutrition Facts label. Instead of Nutrition Facts it will be Medical Facts.

I want do a simple anatomy drawing that highlights the patients' illness. To the side of this will be an easy to reference list of all pertinent info. This will be done in such a way to mimic a nutrition label. I think this will be very eye-catching. I want senators and congressmen, bus drivers, and waitresses to drive by this, and I want this kind of clarity and transparency for themselves.

Where do you come in? I need walls. I would prefer them white, primed and ready for mural work. And I want these murals be in the busiest areas of Washington, DC.

I may be only a mother, a wife, a sales girl, a teacher, an artist, and a caregiver, but I will effect change. I will give all my talent, my abilities, my energy, and my belief to helping us all.

Someday you will not have to fear a trip to the hospital. You will know you will be cared for. No wife or nor husband will have to fight the silent fight for the one they love. I will stand up. They will take notice. I will never give up.

Please forward to this to anyone you think could help.

Welcome to my new Medical Advocacy Blog

Hello, everyone. You might have heard of my fight for medical advocacy, medical transparency, patients' rights, and my proposed Medical Facts mural project in Washington, DC. Check here for updates, look for me on Facebook, spread the word, fight the fight; we will never give up!

Bellow is my first letter of advocacy on April 29, 2009 sent to 1,000 people by email (hospital names where we stayed have been removed :

Dear Friends and Fellow Fighters,

The following is our horrible account of Fred's health care prior to +++ and while admitted to that hospital. If you think there is no way you can help me in getting +++ to change their policies or fix a very broken health care system, do not read any further. Please do not talk to Fred about this as he does not wish to relive the experiences of the past few months. 

I am asking for your help. If I have emailed you, You are either a fighter or placed in a situation where I think you could help. I will be writing the physician's board about this, but I am afraid that path may be far to slow to effect real change. I have been told by a very lovely lawyer that you can't have a mal-practice case when you have Kidney cancer because delayed diagnosis doesn't work in this case as you are going to die with this type of cancer. I really appreciate a straight shooter like that. I also did not mention any names in this brief as I do not wish to be accused of slander.

Back in January, Fred started complaining of rib pain. He went to **** for X-Rays. He had a broken rib..from coughing. We got pain meds from his primary care physician. In Feb. severe back pain began. We got more pain meds, muscle relaxants, and laxatives. The pain did not stop we got more pain meds and more laxatives. We went to +++ for more X-rays in March. We were sent home with more pain meds. I went to the next appoint and told the Doctor I was concerned about his kidneys. She said it could not be his kidney's as he had back pain. I demanded an MRI. We got an MRI to check for a pinched nerve. There was a shadow on the MRI. The primary care Doctor scheduled an appointment with an oncologist for the next morning.

Most of you are aware of the very bad news we received on March 27th. My husband was told he had 9 cm malignant tumor in his Kidney that had metastasized throughout his body. He was told this by his oncologist while alone. I rushed to the hospital. Fred was in despair. 

I spent the next several days trying to get a straight answer from the Oncologist /Internist. I was not given prognosis or diagnosis for days. I researched this cancer by myself on the Internet. I went to the websites of cutting edge hospitals. I kept getting the same answer. The way Fred's doctors were describing this cancer it was metastatic renal cell carcinoma in other words: Kidney Cancer Stage IV. This disease has a 5% survival rate at this stage. The doctors would not tell me how long we had. When I pressed them by saying, "Would 2 weeks to 5 years be reasonable?" The internest said yes. 

The oncologist in charge of my husband went away for a long weekend and was not available for days afterward. The oncologist seemed to avoid me when I got back. He did not return my calls. He even complained to my husband that "if little Miss A-type personality wants to talk to me she she come talk to me herself." This comment made Fred anxious. He thought if we made waves the care would get even worse. The oncologist routinely referred to me as the "wife." He never called me by name. He rarely made eye-contact. He would spend only minutes with me or my husband. The internist seemed to being trying to make up for this lack by calling every hospital he could to find someone willing to do surgery on Fred. He said he spent an "hour and a half calling NIH, John Hopkins, and Washington Hospital Center." He told me he was taking this case PERSONALY. He said he saw himself in my husband. They were the same age. They both had two kids. The youngest was three. I began to worry that the internist had lost all objectivity in the case.

On the nursing front, Fred's bedding was not changed for three days untill I changed it. Fred was admitted in a wheel chair. He could barely walk. They provided no walker the entire time we there. He was told to lean/put all his weight on his rolling IV tower (This is against Fall prevention guidline at most hospitals.) I helped Fred to the bathroom untill Fred could no longer walk. I did my best to change him with no training from the nursing staff when he became bed-ridden. I bought Desitin to help with the result of infrequent changes of bedding. 

I mentioned my concern about needing a way to urinate.(A distended Blader was mentioned on the MRI of 3/25/09, the Bone scan of 3/28/09, on nurses notes on 4-10-09. The radialogist that saw Fred on 4-10-09 said the bladder was dangerously distended. She said she would call the oncologist. A nurse tried to do a Folley and was unable due to lack of experience. A urologist did not come till the next day 4-11-09. His report said he would come back to check on Folley. He never came back. In the four weeks we only saw th urologist twice.

We went to 10 off site radiation sessions. We were never told before beginning radiation that we would need ambulance transport. The first transport the ambulance shoved Fred's metastised hip causing extreme pain. On the third or fourth transport the tech droped his side of the gurney. The tech was fired. Fred was moved 20 times from bed to gurney with a pathologic break to the hip. 

They kept telling us they were trying to line up surgery. The first thing you need to do in Kidney cancer is remove the Kidney. On Saturday morning 4-18-09 The oncologist came in our room. He told us he was going to send us home. It would be pallative care from now on. This is called being sent home to home hospice. He stayed about 3 minutes with us. Fred and I cried. Fred told me now could start making waves. 

I had to wait till Monday due to the fact you can't get anything done in hospitals on a weekend. On Monday I replaced the primary care physician who never called or came to the hospital in the four weeks we were there. My primary agreed to take the case. He worked with @@@ to get them to accept us. I worked on calling the oncology practice directly to get them to accept us. I worked with the Blue Cross/ Blue Sheild Case worker to arrange transfer. (After two days of dealing with +++ she was crying on phone to me.) It took three days, Neither doctor from +++ helped in this process. On 4-21-09 the oncologist came to our room and told us, "so you are being transfered to @@@?". I said, "Yes, we would like a second opinion." He said "No hospital is going to do surgery on you." I asked what had happened to the ortho consult we had been waiting 5 days for? He said "You are being transfered you are not getting any ortho consult." Then he left. He upset Fred so. I told the customer relations person from +++ I wanted him barred from the room the next day. 

We did not get to leave untill evening 4-22-09. When we arrived we found out all the info for transfer had not been sent to @@@. Fred was without pain meds for 5 hours due to lack of paperwork upon transfer. The next day I had to go back to +++ to get the info that had not been sent with transfer. The nurses at @@@ pointed out that Fred had an unlabeled litocain patch and Fentynal patch. The Doctors determined he had a pathologic break and scheduled surgery.

Things are so much better at @@@. We have met daily with a wonderful oncologist. We have seen the urologist, cardiologist, great nurses, a wonderful social worker. We are so happy to be at @@@They are going to do the Kidney removal Surgery. 

I still want to do something about +++. No one should go through what we went through. I will talk to anyone. I will go before congress. If you can help me to change this system so this does not happen to anyone else, let me know. It is hard enough to hear you are most likely dying without going through this hell. The system must be changed. 

Thanks for your Help, 

Regina Holliday

(Miss Regina)

(Reggie)

(The really nice lady at Child's Play)