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Thursday, April 15, 2010

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.
“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 He was sent with an out of date and incomplete transfer summary and MAR.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.


  1. Wow, This is a lot of information. I agree with you, I think it is our right to see our own files and to know what is going on with ourselves.

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  2. Interesting! I hope you can post a normal font so that I can read that easily. Anyway, thanks for sharing this informative post.


  3. Oh' this is cool! Glad you shared this informative post. I also want to have an access to the electronic medical records.