TAMPA — After he was diagnosed with prostate cancer, Ernie Gonzalez became a model patient. He read up on the disease, learned the medical lingo and compiled lists of questions.
And yet he remained overwhelmed by all that lay before him. So Gonzalez hired a "navigator" — Susan Scherer, an independent oncology nurse who helped him pick a physician, explained his options and scheduled his treatment. She even sat in on several medical appointments.
"You do the talking, but she'll ask the questions you forgot to ask," said Gonzalez, a 61-year-old acupuncturist. "Having her next to you, the doctors are a little more cautious about what they don't tell you."
While many in the health care system aspire to a more patient-centered model, growing interest in navigation services shows the medical maze to be more complex than ever, often requiring expert guides.
Scherer, who started her business called RN Cancer Guides last year, said she routinely sees the fallout of the medical system's shortcomings. Just a few examples: duplicate MRIs, unnecessary medications and miscommunication over treatment options.
"You see patients falling through the cracks, and it's everywhere," Scherer said. "A lot of our patients say, 'I'm not getting heard.' "
While freelance navigators like Scherer tout their independence, a growing number of hospitals have hired navigators to help their patients.
BayCare Health hospitals, for instance, have nearly a dozen nurse navigators for a variety of illnesses, including breast cancer and certain heart conditions. Agnes Jastrzebski, the breast cancer nurse navigator at Morton Plant Hospital in Clearwater, said she sits in on patients' meetings with surgeons, helps them arrange appointments and fully reviews their treatment plan until she's sure they understand it.
"Right from the start I'm part of the plan," she said. "Patients know they can call me any time."
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The phrase "patient navigator" was coined more than two decades ago by a Harlem doctor who saw the role as helping low-income patients get medical care. Over time, patient navigation has evolved into a more comprehensive advocacy program, usually geared toward cancer patients.
There is no official certification to call yourself a "patient navigator," though they are typically licensed nurses or social workers. Some hospitals, like Moffitt Cancer Center in Tampa, don't have staffers officially called "patient navigators" but do have employees who perform similar functions as part of a patient support program.
Most hospital-based navigation programs are tied to cancer patients, who often face an increasingly sophisticated — and complicated — treatment gauntlet. Starting next year, hospitals must have a cancer patient navigation program in place to meet the latest accreditation requirements of the Commission on Cancer, part of the American College of Surgeons.
Hospitals themselves could benefit from navigator services. Medicare now fines hospitals that have too many patients readmitted within 30 days of being sent home. Some typical reasons for needing to go back to the hospital — such as mixing up medications or failing to go to follow-up appointments — could be prevented by the one-on-one help offered by navigators.
Cheryl Hamilton, a former hospice executive, owns Envista, a Tampa health care consulting firm that has offered patient navigation services for the past year. She said if she and her team can help patients with medication management, nutrition, even transportation or child care issues, the entire system is better off.
"We're in the direction of trying to allow all providers to be on the same page," she said. "We're clearly not there yet."
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The usual question in health care looms over the issues of navigators: Who pays?
Not insurance companies.
Hospitals must find the money in their budgets, or hunt for foundation funding. Memorial Cancer Institute in Broward County added three nurse navigator positions after a patient survey found they were needed. Within a year, they added three more because the program was so well-received both by patients and doctors, said Teddy Speropoulos, director of oncology supportive services for Memorial.
"You can't put a dollar on patient satisfaction," said Speropoulos. "It does reap benefits, I can tell you."
Entrepreneurs like Scherer and Hamilton run their navigation services on a concierge-style model, charging patients by the hour for an agreed-upon list of services. At Scherer's RN Cancer Guides, for instance, plans start at about $750, which includes 10 hours of services.
Though patients must pay out of pocket, Scherer, who worked at Moffitt before starting her business, said this can be a smart investment in the long run. She can help people apply for disability or insurance benefits they otherwise might not have known about. And she can spot potentially unnecessary (and expensive) care. For instance, one patient was getting pricey injections to raise her white blood count. Scherer reviewed the patient's lab work, which showed her white blood cell counts were fine.
"Nobody had stopped to look at her labs and say, 'You don't need this,' " she said. "We can guarantee savings."
Gonzalez, the prostate cancer patient in Tampa, said his investment in the services — about what he might have paid for a nice vacation — also bought him peace of mind. He had scared himself by going online and reading blogs and patient stories.
"What's good is, she shows you the real picture but it's, 'Stop being scared. Let me do the digging,' " he said. "The moral of the story is that I'm so glad Susan was able to settle me down, guide me down to where I've got to go, instead of me just dancing around."