A patient advocate’s journey
Like many people, I never gave too much thought to the whole healthcare delivery process until it impacted me personally. My journey began with a phone call in 2010 notifying me that my 85-year old mother had fainted. A fall at her age often results in serious issues, but fortunately she only suffered a scrape. I did, however, take her to the doctor.
As part of her exam, the doctor ordered bloodwork and determined she was diabetic. Appropriate treatment was initiated but the doctor also ordered an MRI – which revealed cancerous cysts in her pancreas, kidney and spleen. The same day that the doctor identified the cause of her elevated glucose, I dropped out of my MBA track and become a patient advocate.
It was a long road to prep her for surgery at the UCSF Medical Center cancer unit in San Francisco. Every step of the way each nurse asked what medication Mom was taking. Since she was taking so many, I carried a list of meds. In the end, after six hours of surgery to remove three organs, she made it through with flying colors.
Upon discharge we were given a list that looked similar to this. The Xs and Os each represent what old medicines Mom was to discontinue taking, what new medications to start, and which meds needed to be refilled. Imagine being an 85-year-old woman recovering from major surgery and being expected to figure out a new medication regime based on this chart. I was her patient advocate and even I found it hard to decipher! I learned that patients needing more clarification were told to follow-up with their primary care provider. A tough transition of care, to say the least!
Jump ahead two months post-discharge. Mom had an issue with bad back pain and had to go to the ER. She was taken to the local Sutter facility (not affiliated with UCSF Medical Center) and was diagnosed with gallstones, which would require the removal of her gallbladder. Unfortunately, she didn’t have any of her records from UCSF, nor a list of her medications. In order to provide Sutter with her records I had to drive to UCSF, pick up all of Mom’s images and documents, and deliver them back to Sutter.
In the end my mother made a full recovery. Sadly, though, our experience with her medical records was in no way unique. Record sharing between facilities is rarely automatic, much to the frustration of patients and their caregivers. Even within the same organization, patients must provide the same information over and over again. Transitions of care are far from seamless and too often patients are given inadequate tools to self-manage their medications.
As an industry we must do better. I am passionate about the Cal INDEX mission because of my first-hand experience as a patient advocate and seeing the many inefficiencies that impact the quality of care.
Cal INDEX is committed to serving both providers and payers and to creating a clinical information network for the whole state of California. Eventually we hope to have longitudinal patient records for every Californian so that the quality of healthcare is enhanced, transitions of care are more seamless, and medication management is safe and easy.
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My mom is now 92 years old, lives independently and is still going, thanks to the outstanding (yet at times challenging) care she received. If one day my daughters ever have to serve as my advocate, my hope is that the challenge of health information exchange is a challenge no more.
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