Through blogs and comments, patients and experts explore what it takes to find good health care and make the most of it.

Are Patient Navigators Necessary? Or Just Nice?

|

article image
Follow us on Facebook

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.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


Tags for this article:
Inside Healthcare   Organize your Health Care   Pregnancy/Childbirth/Breastfeeding  


Comments on this post
Please note: CFAH reserves the right to moderate all comments posted to the Prepared Patient® Blog. Any inappropriate postings will be removed.


maggie hover says
May 22, 2013 at 9:05 PM

Wow! The same, exactly, could be said of spiritual directors and life coaches. I always like Jessie's literate, thoughtful, wry ("let a thousand flowers bloom") take on things medical. maggie

William Rosenberg says
May 23, 2013 at 5:31 AM

Inevitably, there will develop confusion between patient navigators and those "navigators" intended to help people shop for and select apprpriate insurance on the new public and private exchanges. Like patients tackling new diseases, insurance shoppers may never have had the experience, may not know how to interpret the informtion presented, etc., and, too, the question: what compass will the navigators use?

Mighty Casey says
May 23, 2013 at 3:10 PM

I feel like there's a "warning! warning! danger, Will Robinson!" issue here, given the lack of metrics on efficacy/outcomes for the navigators already in place. I was my own cancer navigator, and of course I feel like I did a pretty good job since I'm still here 5+ years later.

Is there a need for those of us who have been-there-done-that to start teaching our skills/knowledge-set to others in the same boat? That's at least part of why #bcsm exists: to help newly-dxed folks and those that love them figure out which way is up after hearing the word cancer and your name in a sentence.

Since I'm one of the great wad of unwashed, er, uninsured as well, I think I'll be able to lead at least a basic workshop in how to shop for *insurance* too - been trying for almost 5 years to find some, know the ins'n'outs at least as well as a broker at this point.

So ... is it time for Grassroots U to open up an Empowered Patient 101/Navigate Yourself department?

Sarah Fay says
October 29, 2013 at 6:24 PM

Jessie--

Very interesting blog. I am an advocate for patient navigation and worked on a few pilot programs in Cleveland, OH that make the case for patient navigation. We have done tons of research on the topic, including scope of work, suggested salaries, training, etc. Check out our Issue Brief describing some of our work. http://www.chanet.org/TheCenterForHealthAffairs/MediaCenter/Publications/IssueBriefs/12-12_Patient-Navigation.aspx. We are working on part two which is scheduled to come out later this year and highlights the financial benefits to implementing a program that we saw in every pilot we implemented. In today's world, healthcare organization can't afford not to have these positions in place.

It would be wonderful if everyone could navigate our complex system on their own - but the reality is - that isn't possible at this time. Especially when you are faced with just hearing a diagnosis such as cancer. The navigator is a companion for that patient and is able to uncover barriers that patients face in a way that I have never seen before. They develop a relationship with the patient causing them to open up about their struggles and barriers. Only then can someone help them.

I have heard time and time again that navigators are just a cover up for our fragmented system and we should address the root problem of the complexity. To that I say PLEASE! But in the meantime, while you work on that, these people are needed to guide everyone through and around barriers to care.

hospital marketing says
February 7, 2014 at 9:14 AM

This post is very inspiration. Thanks for the information. Very interesting and informative. Thanks a lot. Hope to hear more of your thoughts again. will check your blog once in a while.

hospital marketing