"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.

Helping the Homeless

As I use a push cart to transport large amounts of art supplies from place to place in Washington DC, I am often treated oddly by strangers on street or in the bus. I will be wearing my old paint clothes and have buckets and brushes and bags of supplies. I will push my cart and say hi to folks. I am acting the same way I would if I were wearing a nice dress with a briefcase in my hand. I am being friendly and open and it is amazing how many people will not look me in the eye. They see my cart and swerve their body direction. They march quickly by and focus their eyes far into the distance. I do not exist to them. If I have far to go, I will load my over-full cart onto the bus. I watch as a few passengers move and sit several isles away. No one wants to sit beside "the crazy cart lady." I quietly laugh to myself, but I am feeling a touch of the despair and isolation, that is part of life if you are homeless.

Have you ever been homeless? Have you ever worried about where you might rest your head each night? Hopefully, you have not had to deal with this problem on such a personal level. Hopefully, your experience with homelessness consists of helping out at a local shelter or soup kitchen. But if you have been in that place in your life when there is no safe home to go to, you probably prayed there was a shelter willing to take you in.

Many years ago when I was 17 and my sister was 15, we ran away from home. We left with our mother's blessing, as our father's drunken violent outbursts were getting worse. We each packed our school bags with some clothes and walked down the street in darkness. We had no idea where we supposed to go. I had an abuse hot-line number that we called using a neighbor's phone. There was a shelter willing to take us in. We went to the shelter and spent almost two weeks at the facility.

The staff and volunteers at the shelter were so kind. They helped get a court order preventing our dad from being within 250 feet of us. When I showed signs of anemia, they had me checked at a local hospital. As an uninsured teen, I was amazed they would have me checked because I "might" have something wrong. In addition, they provided balanced meals that the staff encouraged us to help prepare. I learned more about proper nutrition during mealtimes at the shelter, than I had ever learned at home or school. At the end of the two weeks, my Mother decided to leave my Father rather than lose her daughters. It was a hard decision, but the those two weeks of us away gave her the courage to make that decision. We were so fortunate we had a shelter to go to.

Not everyone is fortunate. In Washington DC, we had massive over-crowding in our shelters during the winter season and funding is scarce. What can you do to help out? You can encourage the city administration to fund and support housing and shelter initiatives in DC. You can volunteer and get to know our local homeless brothers and sisters. Or You can buy Street Sense magazine each time you pass by a vender.

Another way you can help is to donate to the St. Paul's Lutheran Church Rummage Sale to be held on May 1st, 2010. All proceeds will go to support the in-house homeless shelter and other homeless charities in DC. The Church will accept any sellable items during set hours the week prior to the sale. Full information about the event is posted below. I am sure you can find items you no longer need that can be sold to provide shelter for people who have nothing at all. I myself, I'm trying for a 50% reduction of the "stuff" I own. I may live in a smallish apartment but I am sure I can part with quite a bit of things if it means someone else will get to eat. I hope all of you can do the same. I look forward to seeing you at the sale.

Community Rummage Sale

Sale to be held at

St. Paul’s Lutheran Church

proceeds will help fund the

St. Paul’s homeless shelter

and

other local homeless charities

May 1st at 8:00am to 1:00pm

Please Drop off Donations at

St. Paul’s Lutheran Church

4900 Connecticut Ave. NW Washington, DC 20008

Small item drop off Sun-Thur: Books, Clothes, Knickknacks, Toys, Small appliances, Etc.

(Please Drop off Large items on Friday the 30th)

Drop off available Sunday the 25th 12:00-3:00pm

Mon. 26th,Tue. 27th and Wed. 28th 3:00- 6:00pm

Thursday 29th & Friday 30th 3:00pm-7:00pm

Tax receipt is available at time of Donation.

Questions? Regina Holliday at reggieart123@yahoo.com

The Man Who Lived

Dave deBronkart

pictured below

Before the real story begins, first we experience a tragedy. This is often the premise within children’s literature. First you have to kill or displace a parent, before Harry Potter, Percy Jackson, Taran of Prydain or Rosalind Penderwick can go on to their adventure. Their personal tragedy or crisis creates the impetus for the characters to act in a new way; therefore furthering the plot. Such crises induced action does not exist only in children’s literature; but instead, is a mainstay throughout our culture. Every day individuals must make critical medical decisions based on their of their disease. Patients must make choices on whether to seek second opinions after being confronted with a dire diagnosis. As Thomas Goetz states in the book The Decision Tree, in a chapter focusing on the results of a 2008 study on smoking and obesity, “ Whatever its form, a true crisis can serve as a catalyst for change, the researchers concluded, a mechanism that disrupts the course of normal life and arouses a reevaluation of identity. It puts meaning together with behavior change. A health crisis gives people permission to behave in a new way.” Patients and their families should become empowered in the decision making process as a result of experiencing a medical crisis, and thereby, choose a new and better life path.

ePatientDave used to be a regular guy with a regular name. He was born in 1950 and named Dave deBronkart Jr. He worked for many years in multiple industries before becoming a member of the IT movement in 1989. In January of 2007, he was diagnosed with metastasized renal cell carcinoma stage four. Most patients die within months of this diagnosis and there is a less than 5% survival rate for the two years following diagnosis. Dave, as an experienced Internet researcher, used every search engine at his disposal to research and help decide the treatment options for his disease. He and his collaborative physician decided on laparoscopic surgery and he participated in a clinical trial of high-dose interleukin-2. The dual treatment was successful and he is now cancer free. His whirlwind experience in trying to get the correct treatment within a short time window; informed his choice to take a new life path. Dave is now a public speaker and blogger on patient empowerment, participatory medicine and patients’ rights. At a recent ONC meeting, he was introduced before doctors, government officials and software designers as ePatientDave. He is known by a superhero name. His crises of medical care created a new name and a new life path for Dave in which he speaks out and helps others.

Just like Dave, Lisa Lindell was once a regular person. She worked in an office. She was a loving wife and mother. In March of 2003, everything changed. Her husband Curtis* was burned by an electrical fire. He was hospitalized in Texas at a major medical center. She experienced first hand the problems with patient care in the United States of America. Curtis was hospitalized for 108 Days. He suffered through skin grafts, fluid in his lungs and multiple infections. If Lisa had been unable to be a constant caregiver at his side, Curtis would have died. Lisa was a strong empowered caregiver throughout most of Curtis’s hospital stay and to this day helps the disabled Curtis with daily living. She routinely speaks on patient issues and hospital acquired infection. She wrote a book on her experiences caring for Cutis, and believes it is her duty to get the word out to as many people as possible. Her life was changed forever by her experience caring for her husband and she hopes to make the world a better place for patients and families.

*Name changed to protect the individual.

Trisha Torrey’s crisis, was the result of no crisis after all. Trisha had a biopsy on an unusual growth in June of 2004. The oncologist told her she had a diagnosis of a rare cancer called Subcutaneous Panniculitis-like T-cell Lymphoma (SPTCL.) It was a very lethal and aggressive cancer and he recommended immediate chemotherapy. Trisha was concerned because after researching her diagnosis; she did not have the other symptoms of so dire a disease. She said no to taking such a toxic treatment without a second opinion. Her doctor “fired” her for her decision, but Trisha was right- she did not have the disease. Her experience in “almost” having cancer made her decide to be an empowered patient speaker and blogger about patients’ rights. She wrote a book on the subject called You bet your life!: The 10 Mistakes Every Patient Makes. Trisha took a potential tragedy and turned it into an opportunity to help others.

So these three people, like many fabled heroes in a children’s tale, decided to take the worst thing that happened to them and turn it into the best of life-affirming choices. They decided to confront a patriarchal medical system and instead work toward a collaborative model. Just as Professor Dumbledore, told Harry Potter in Harry Potter and The Goblet of Fire, “Dark and Difficult times lie ahead. Soon we must face the choice between what is right and what is easy.” It might been easy for Dave, Lisa and Trisha to go back to their regular lives. It might be easy for patients to give up ownership of their own medical outcomes, but is it right? Each Patient and caregiver has within them the elements to make a hero. Dave, Lisa and Trisha faced their choices and because of that live empowered lives helping others. Darkness must come before the dawn in every life, as each hero creates a path towards their happy ending.