I recently had the pleasure of participating in Jody Schoger's Breast Cancer Social Media twitter chat (#BCSM). Jody is a writer and an advocate for cancer patients, and I encourage you to read her blog, Women with Cancer. One of the topics that struck a chord with many of the chat participants was that of patient navigators. Some people said they knew more than their navigator, some folks wanted better regulation of the term, others thought they were excellent additions to the care they received, and yet others were never offered or made aware of this service in the first place.
I know that each time I have received a cancer-related diagnosis, I felt like I had been drop-kicked into a foreign country: I didn't know the language, I didn't understand the culture, I didn't have a map and I desperately wanted to find my way home.
Over the years, I have listened to hundreds of people describe the same experience following the diagnosis of a serious illness. As the number of physicians, diagnostic test sites and treatment options have grown, and the lack of seamless, coordinated care persists, the majority of patients and their loved ones struggle to find good care and make the most of it.
One solution that has garnered attention is to put in place individuals with the job title of “patient navigators” to fill the gaps that ill people often experience in administrative and clinical care coordination.
To quote Butch Cassidy, who are those guys anyway?
In 1990, pioneer Dr. Harold Freeman built the first patient navigator program at Harlem Hospital to help shorten the time between the diagnosis of cancer and beginning treatment. The navigators were former cancer patients and the program was successful in achieving this aim. Since then, the navigator concept has exploded. You now can find patient navigators deployed to help people make their way through treatment for breast cancer, cancer in general and some chronic conditions. Navigators also help certain populations like the under-insured and older people, and help with care-related financial matters.
What do navigators do? Interesting question. It depends. Some with that job title perform unskilled roles: they greet and perform concierge-type interactions at hospitals, coordinate appointments, accompany patients to tests and consultations. Others draw on considerable clinical skills to perform their responsibilities. They explain tests results, prepare patients to share in treatment decision making and refer people to needed community services.
How are they trained? The training available to qualify as a navigator is highly varied and is delivered by a variety of interest and professional groups. Some patient navigator programs are staffed by medical social workers or nurses with additional training. Others require no background in health, only some training in diverse content that can take place over the course of two hours, two days or two months. Some patient navigators are volunteers, some earn minimum wage and some are paid as professionals. Some groups certify those they train, but the recognition of that certification appears to be mostly local.
How is the effectiveness of patient navigator programs measured? No single list of expected outcomes of patient navigation and metrics to account for them appears to be widely used. Little information is available about whether and how practices and hospitals evaluate whether these individuals are fulfilling their stated functions. The evaluation literature on this topic is spotty.
Who pays for patient navigators? Pharmaceutical companies have invested heavily, as have some foundations and individual philanthropists. The federal government supports a number of research programs to develop and test models for patient navigators. Navigators play a role in many of the National Cancer Institute Community Cancer Centers and are sponsored by many local units of the American Cancer Society.
And how widespread is patient navigation? Hard to tell. The media has taken a shine to the idea. And it has produced many employment opportunities: over 800,000 job listings for patient navigators appear on the Simply Hired Website this week.
What's wrong with this picture? Well, aside from concerns about accountability, quality control, and program instability due to a lack of a sustainable revenue model, I suppose this general “let a thousand flowers bloom” approach is OK. I’m all for entrepreneurial types stepping in to take up the slack in service delivery.
But as a participant in and observer of health care reform, this is simply not good enough. Many of us lack the skills and knowledge to find the right care and make good use of it. We vary in our experience with illness and our abilities, but few of us are prepared to confront the complex information-and-service-seeking requirements of health care today, especially when we are frightened and ill. The consequences of our lack of preparation are delays, poor decisions about providers and treatment, sporadic follow-through and low adherence to recommended tests and treatment. This harms us, contributes to poor outcomes and wastes resources: ours, our employers, and our government's.
These are problems that are necessary to improving the quality and effectiveness of our care. They are not ones that it is merely nice to address by off-loading the problems on to a new class of variably trained players: the patient navigators.
This haphazard solution to meeting our needs adds to the fragmentation of our care and deepens our confusion about the roles and responsibilities of our clinicians. It pushes technical responsibilities to lower-paid non-professionals who lack accountability for outcomes. The informal position of patient navigation within quality measurement/improvement programs allows hospitals to claim they address critical care coordination concerns while abdicating responsibility for them.
In the late 90s, I met with the president of a major disability insurer to ask her if she would be willing to implement a patient-navigator-type program for people with chronic diseases. She said, “Sure. But to do this, I need a scope of practice. I need to know who to hire: what skills they have, what training they need and how their qualifications are certified. I need to know what outcomes I can expect with what level of effort over what time. Give me this information and if it will help beneficiaries without breaking the bank, I'll pay for it.”
Can this be done for patient navigators? Agreed-upon aims, evidence about effectiveness, description of required skills, scope of work and well-defined metrics for assessment? These things are necessary so that in this time of evidence-based health care, programs can be implemented that ensure we have the guidance and support we need to make the best possible use of the services and treatments available to us.
If this information is not available, what will it take to produce it? And if it doesn't exist, or if there is no commitment to producing it, should patient navigation just continue to meander along?
This blog has been updated from its original version, published on May 4, 2011.