Regina Holliday -- Caregiver, Patient Advocate, Artist

This is the speech I gave At the National Partnership For Women and Families on June 24th

Thank you, Debra, and thank you to everyone at the National Partnership for inviting me here today. I am an artist, a widow and the mother of a child with autism – and, like all of you, I am an activist for better care.

From January to March of 2009 Fred went to his primary physician a dozen times with complaints of pain. He visited two ER’s with severe pain and was sent home with pain med’s each time. After two months of this, I demanded a diagnosis.

On March 25^th he was hospitalized for additional tests.

On March 27^th the oncologist told my husband while he was alone and told him he had tumors and growths.

The oncologist then left town for four days.

We had no access to the written record and were given brief verbal summaries by the on-call doctors. We were continuously hospitalized in five different facilities in what would be the last three months of Fred’s life. Fred had a broken hip because a careless shove on a point of metastasis during a transfer for radiation, skin breakdown because of inconsistent bedding changes, and avoidable complications because nobody was communicating.

No one had all the information they needed to see the whole picture of Fred.

This experience was horrible that I became and advocate for patient access to the electronic medical record.

Perhaps our worst experience was his transfer to a new hospital with an incomplete and out-of-date transfer summary. As a result, Fred was denied pain medication and food for six hours as the staff at the new facility tried to cobble together his medical record using a phone and a fax machine. When I had asked for his electronic medical records 6 days earlier, I was told that it would cost 73 cents per page and that there was a 21-day wait.

I was astounded. This was a hospital with fully functioning electronic medical record system, yet they were asking us to wait 21 days and spend hundreds of dollars just to see Fred’s record.

I eventually got a copy of Fred’s record and – despite its many errors– it became a virtual bible that we used to guide Fred’s care for the last 56 days of his life. There was not a day I didn’t reference it, and that information extended Fred’s life and helped create a fragile peace within our hearts; for there is no greater sorrow then watching your loved one suffer while you feel helpless because you don’t have the information to know what’s going on, what he needs or how to help.

That is why I am working so hard for clarity and transparency of electronic medical records. I may not be an expert in medicine, but I am an expert on my husband. With access to his medical record, I could explain his treatment options and help ease his mind.

When I speak, I’m often the only person in the room without a degree after my name. I am glad there are so many educated professionals working on health information technology, but it’s also important for patients and caregivers like me to be heard. Thank you for organizing the Campaign for Better Care, to give us a voice.

I said when I began that I am an artist; I paint images of data. I depict silos and closed data-loops in an effort to warn others of what can happen when patients are left out of the solution. That’s one of the ways I speak out for Fred. I am his voice and, I hope, your voice. We are all be patients in the end. We all have the right to be treated with dignity and respect. Thank you.