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As an example of today’s trend toward individual empowerment in healthcare, consider the experience of Lisa Lindell, who has no medical training or specialized health knowledge. In 2003, she stood by the hospital bed of her severely ailing husband, Curtis, and had a nagging suspicion that something about his treatment was going terribly wrong. “At first, like most patients, I thought my job was to stay out of the way of the doctors,” recalls Lindell, an accountant for a construction company. “It soon became obvious that if I didn’t manage his care, he wasn’t going to get any.”
Curtis, 44, had been admitted to a Houston hospital for third-degree burns. For weeks, a revolving door of doctors and nurses pronounced him in stable condition. But as Lisa kept vigil by his bedside, she was watching Curtis deteriorate. Fearing for her husband’s life, Lindell decided to take matters into her own hands. With the help of her sister, a registered nurse, she began to ask questions, research his symptoms and seek out specialists.
During Curtis’s 108-day stay in the hospital, it was Lindell and her sister who pushed for surgery on his gallbladder, which unbeknownst to the doctors at the time, was critically infected. And it was the two women who called for an infectious disease specialist when Curtis’s lungs collapsed, and who pushed for the antibiotic, imipenem, that ultimately saved his life. “My husband wouldn’t be here today if not for my sister and me,” Lindell says. Her message to patients? “It’s critically important that you know as much as you can when it comes to your healthcare,” she says.
There are healthcare experts who wholeheartedly agree. “The person suffering from a disease should participate in developing a healthcare plan,” says Lucien Engelen, Health 2.0 ambassador at Radboud University Nijmegen Medical Center in the Netherlands. “In most cases, a patient only gets asked in the last stage, perhaps just to fine-tune a treatment plan.” He believes that planning should include the patient’s family, because they will help the patient fight the disease. “These are the experts—the patient and close family members—who know what it means to experience a specific disease in a particular instance,” Engelen says, “and they must face the challenge of balancing choices based on treatment efficacy and safety.”
Patients and their advocates have an unprecedented amount of information sources available to them. The nature and degree of proactive engagement in treatment options among consumers can impact the regulatory, discovery and business aspects of health.
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