Prescriptions for better health care and health: empowering patients, increasing health education and collaboration

By Melissa Patrick
University of Kentucky School of Journalism and Telecommunications

The importance of empowering patients, increasing health education and collaboration were a few of the topics discussed at the Health Watch USA 2013 Conference in Lexington Nov. 1.

"Patients must be empowered with knowledge" was the primary message of Dr. Joycelyn Elders, professor emeritus of pediatric endocrinology at the University of Arkansas School of Medical Science and former surgeon general under President Clinton.

“You can’t keep ignorant people healthy,” Elders said. “We must educate our patients or we will continue to have major problems.”

Elders called for doctors to fight for comprehensive health education, everyone must be involved – the schools, the Internet, social media – and said that as a country we need to embrace comprehensive health education instead of being afraid that all discussions will lead to sex.

Patients have a responsibility to ask questions about their health care, Elders said, and if people are better educated in health care they will have a better idea of what to ask.

Karen Meyers, who works with catastrophic-injury victims and health-care providers, shared the story about her elderly mother who was critically injured during a fall; the doctor said she was terminal. Meyer persuaded the physicians to try to save her critically injured mother eight years ago, and that spurred her passion for the importance of patient and family-centered care. She attributes her mom’s recovery to doctors who listened to her and excellent nursing care.

 “Patient and family centered care,” Meyers said, “is based in dignity, respect, information sharing, participation and collaboration. We must teach doctors collaboration and that the patient and family are part of the team. We are not a threat. We are not ignorant. We should not be dismissed.”

Meyers went on to say that “The home care agency of the future is the patient, the family and the support systems. We have to have a support system that works and we have to include them.”

Elders also talked about collaboration between physicians. She said they need to provide integrated, comprehensive and transparent care because when a patient is seen on the same day by a team of specialist, they receive better care and experience better outcomes.

Martha Deed, a retired psychologist and a member of the Consumers Union Safe Patient Project's patient safety advocates network, was a seasoned patient advocate for her daughter, Millie Niss. who had Behcet's disease, a chronic disorder of the blood vessels.  Millie was hospitalized with a severe case of swine flu in 2009, coding within one hour of arrival at the hospital, and died less than a month later.

While in the hospital, Deed and Niss documented everything.  They voiced their concerns, followed the proper channels of communication, documented faulty medical equipment, found inaccuracies in nursing and doctor reports and requested test.  Despite this high level of advocacy, Millie died.

Millie's autopsy revealed a missed diagnosis that might have saved her if it had been discovered and treated, Deed said. She has since applied her research skill to investigate both the specific medical as well as hospital culture/system causes of her daughter's death. Her goal is to prevent future premature deaths in the hospital. "Patients and families very much need to be listened to," Deed said.

Elders offered advice on how to be an empowered, health literate patient:
• Take a trusted person with you when you go to the doctor
• Ask questions, write them down before you go to the doctor
• Bring all of your medications with you to each doctor visit
• Ask the doctor to write down suggested actions and medications
• Let your doctor know if you have vision and/or hearing problems
• Ask your doctor about the results of your test and what they mean

“Our health care system is presently physician centered, but patients need to be involved,” Elders said. “The largest health care work force that we are going to have is our own patients. We need to push for education.”

Health Watch USA, based in Somerset, was founded by Dr. Kevin Kavanagh to promote health care transparency and patient advocacy, says its website.
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