Regina Holliday’s Crusade: Who Owns Your Medical Records?

Regina Holliday's 73 Cents Mural

Regina Holliday’s Mural “73 Cents”

 

by Kim Keller

“You go after them, Regina!” Fred Holliday implored his wife. “You do whatever you can to get me care!”

And with every bit of her heart and all of her spirit, she tried. She shook things up but wasn’t able to save her husband.

Heartbroken yet utterly determined, Regina Holliday has been on a crusade ever since, dedicating her time and her energy to make sure that other families do not suffer the same fate as hers.

Regina’s message is this: patients need to be partners with their doctors and have easy access to their own medical information.

You see, Regina and Fred were shut out of the decision-making, even just the conversation about decision-making, regarding Fred’s medical care when he was hospitalized in March 2009. They were kept in the dark about Fred’s diagnosis and treatment options.

Desperate for answers about what was happening to her husband, who had become physically debilitated by a variety of unexplained symptoms, Regina tried to get hold of his medical record (with Fred’s permission, of course) from the hospital where he was admitted, but she quickly discovered that it’s not easy to do.

Unfortunately, Regina and Fred’s story is not uncommon. Trying to get information from doctors can oftentimes be an exercise in futility. And lots of hospitals put obstacles in the way of allowing patients access to their own medical records, using both high fees and long waits to frustrate the interested parties.

Fred’s health ordeal began shortly after he started his dream job as a film professor at American University in Washington, DC. This was back in September 2008. Fred was 38 years old at the time.

Over the course of that fall and winter, he complained about being tired all the time, and then started having pain in his ribs that eventually moved to his back. The pain intensified. Regina noticed that Fred was also losing weight. His doctor’s only response was to keep feeding Fred painkillers.

By March 2009, Fred’s pain and exhaustion had become unbearable. He could barely move. Regina knew something was desperately wrong and she demanded that his doctor take more action. She insisted that Fred be given an MRI.

By this point Fred required hospitalization because his condition had deteriorated so quickly. Days went by in the hospital as Regina and Fred waited for test results, and finally Fred’s doctor gave him the devastating news — he had cancer. Regina wasn’t there when this painful news was delivered, and when she frantically searched for the doctor to get some clarification about what was going on, it was too late — he’d left town for a conference and Regina was told he’d be gone for days.

No one seemed to be able to give Regina or Fred any more information, not even the basics, like what type of cancer? Where is it located? What’s the prognosis? What are the treatment options? What is the next step???

Naturally, more tests followed, but Regina and Fred were getting very little in the way of illumination. When Fred’s doctor returned, the information flow was no better. In fact, he let Regina know that the questions annoyed him.

On April 17th, more than three weeks into Fred’s hospital stay, Regina was so frustrated by the lack of information that she finally went to the Medical Records department and asked for her husband’s chart. She was told that would cost 73 cents a page and there would be a 21-day wait. Regina was outraged. Hundreds of dollars and a three-week wait to just see her husband’s records? It was money and time they didn’t have and couldn’t spare. She was stunned. This was, after all, Fred’s medical information. How could the hospital make this so difficult to get?

The very next day, Fred’s doctor made an appearance and said that he was sending Fred home with a Patient Controlled Analgesia (PCA) pump. And that was that. No talk of treatment options. No mention of surgery or chemo or radiation. Not even the courtesy of why the doctor was giving up on Fred.

Just like that, he was sending Fred home to die.

That’s when Fred, desperate for help but too ill to help himself, pleaded with his wife.

“You go after them, Regina! You do whatever you can to get me care!”

Regina flew into action and within days she was able to move her husband to another hospital. Fred’s medical records arrived at the new hospital, but out-of-date and incomplete. So, using the fastest and most committed messenger the doctors could find, they sent Regina back to the previous hospital, as their own private courier, to retrieve Fred’s complete medical record. It was ready for her in an hour and a half. It’s a whole different ballgame when doctors make the request, rather than the patients themselves.

And finally, Regina had her hands on Fred’s chart.

She delivered it to the new medical team, and after the doctors were done reading the entire record, they gave it back to Regina and told her to hold onto it because it was safest with her, and it would help Fred receive the best possible care going forward. They knew that Fred would likely need to be moved to different facilities for different treatments, and Regina would need the file to ensure proper coordination and communication among all the medical personnel.

After the doctors returned Fred’s medical record to Regina, she read the entire file. Without the benefit of medical training, it took her three hours to get through the entire folder but she was still able to find 20 actionable errors in Fred’s treatment. From a doctor’s order for a palliative pain consult being ignored for eight days, to more than five separate references, during one specific two-week period, to Fred’s need for a catheter to alleviate a distended bladder, also completely ignored. By the time Fred received the catheter, 15 days later, he’d already developed an infection. If she’d had earlier access to his record, Regina is certain she could have helped to improve the quality of Fred’s care.

Though the new team was kind and professional, and provided Fred and Regina with all the information they needed, they were unable to save him. Fred had stage IV kidney cancer. After 11 weeks of hospitalization, in five different facilities, Fred and Regina chose hospice care.

Though she couldn’t save Fred’s life, Regina has become a leading advocate for patient empowerment. It has become her mission to bring awareness to other people just like Fred and herself. She speaks all over the nation now, trying to educate medical teams and patients alike about the importance of participatory care, about doctors and patients acting together as a team.

And she paints.

Fred and Regina met while painting, and it has been Regina’s creative outlet for years. “You can’t shut up art,” she noted. So she decided to paint a huge mural that told the story of Fred’s medical ordeal.

Fred died on June 17, 2009, and five days later, Regina got out her paintbrushes and started creating the mural pictured above, located on the side of the BP gas station at 5001 Connecticut Avenue, NW, in Washington, DC. It tells the story of Fred’s medical ordeal. She titled the mural “73 Cents,” after the price she was quoted for each page of Fred’s medical record.

I asked Regina what advice she would give to other families on this topic and she said that we should “insist early on to meet with the medical team and ask to have an honest and realistic conversation about test results and treatment options. And make sure you get access to the medical record!” As she reminded me, when Regina could get neither of the above from Fred’s doctor, she fired him and found someone new.

Regina Holliday has used her passion and her talent to make a difference in the world of healthcare. After all, virtually everyone becomes a hospital patient someday, and each of us will undoubtedly benefit from Regina’s tireless efforts.

I hope you’ll take a minute to listen to Regina Holliday tell her own story here.


 

Kim Keller is the Co-Founder of In Care of Dad. She lives and works in New York City.

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3 Responses to “Regina Holliday’s Crusade: Who Owns Your Medical Records?”

  1. Terri Olsen-Greene says:

    I have had my own battles with my Dad’s health care records. I fight for them everywhere I go and always have his Advanced Health Care Directive with me, I have even been told they have to keep my original and run it by their attorneys. I threaten them with my own attorneys. The government is running our health care and our doctors. We need to get control back. You can streamline our doctors by carrying your own Health Care Records. Especially if you have a parent with dementia. This woman is great and I will stand behind her with any action she takes to help this cause.

  2. Tara Wood says:

    I need to know…is it possible to just ask your family doctor for copies of your records? My husband has Early Onset Alzheimer’s, and I don’t have copies of anything.

  3. kim says:

    Hi Tara,

    Yes, you can ask your family doctor for copies of your husband’s medical records. Your husband will first need to sign what’s called a HIPAA form, allowing you to have access to his medical information. Also, as addressed in this article, you may have to pay for the records and it could take a bit of time to receive them. It’s still a good idea to start collecting his records now. All the best to you and your husband, Tara. Kim

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