Regina Holliday from Washington, D.C.

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

Watch Regina tell her story at the National Partnership's 2010 Annual Luncheon

Transcript of Regina Holliday's remarks at the National Partnership's 2010 Annual Luncheon

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, my husband Fred Holliday went to his physician a dozen times for pain. He visited two ERs with severe pain and was sent home with pain meds each time. After two months of this, I demanded a diagnosis. On March 25th he was hospitalized for tests. On March 27th the oncologist told my husband — when he was alone — that he had tumors and growths.

The oncologist then left town for four days.

We had no access to the written record and got a brief verbal summary by the on-call doctors. We were continuously hospitalized in five facilities in what would be the last three months of Fred’s life. Fred suffered a broken hip due to a careless shove 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 so horrible that I became an advocate for giving patients 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Perhaps our worst experience was his transfer to a new hospital with an incomplete and out-of-date transfer summary.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 meds and food for six hours as the staff tried to cobble together his medical record using a phone and a fax machine.

When I had asked for his electronic medical record 6 days earlier, I was told it would cost 73 cents per page and that there was a 21-day wait. I was astounded.

This was a state-of-the-art hospital, yet they were asking us to wait 21 days and spend hundreds of dollars just to see Fred’s record. I eventually got it, and — despite 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 than 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 work so hard for clarity and transparency in the electronic medical record. 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 to be heard.

Thank you for organizing the Campaign for Better Care, to give us a voice.