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Fighting more than cancer, a patient's voice for health information technology

Regina Holliday
Regina Holliday, patient rights advocate.

When Regina Holliday learned her husband, Fred, had stage 4 kidney cancer, she had questions - and desperately needed answers. What happens next? Has it spread? What tests does he need?

Without access to his health record, Regina and Fred found themselves battling more than cancer. He became a number within a bureaucracy where his treatments were often late or overlooked.

Electronic health records and the secure exchange of information between doctors and patients are among the strategies in Oregon's drive for better health, better care and lower costs. With health information technology efforts widely adopted, patients and practitioners could securely manage care together, scheduling appointments, filling prescriptions and coordinating all aspects of treatment.

Health records inaccessible

Fred spent 26 days hospitalized without access to his own health record. When Regina asked the hospital for a copy of his health record, she was told it would take 21 days and would cost hundreds of dollars.

After transferring to a different hospital for a second opinion, the Hollidays received an out-of-date and incomplete health record. The new staff spent six hours trying to stitch together an accurate record over the phone and by fax.

Regina Holliday artwork detail
Regina Holliday has created a series of painted murals depicting the need for clarity and transparency in medical records. She painted at Oregon's first AIM Conference on health IT.

Through the duration of Fred's care, he visited two emergency rooms, received treatment at five facilities and needed emergency transportation 46 times. Not one practitioner or health care facility shared Fred's health record or disclosed his treatments, recent tests, medications or blood transfusions, creating an administrative nightmare for a family in crisis.

Tragedy inspires action

Sadly, Fred died in 2009, just months after his diagnosis. Regina has since become a national voice advocating for better communication between patients and doctors — as well as between practitioners — through the switch to paperless health records and electronic information exchange. Recently, Regina traveled from her Washington, D.C. home to speak at Oregon's first AIM Conference, focused on how health information technology can empower patients and drive better coordination of care.

"In the end, we are all patients," Regina said. "We all want access to quality health care and timely answers to our questions. Having access to our own electronic records, and allowing doctors to securely share records electronically, we can achieve better care and better health."