Patient Navigator

One of the best cancer websites is managed by the American Society of Clinical Oncology (ASCO).  It contains incredibly useful information on everything a cancer patient needs to know, from cancer education, management, financial help, treatments and survivorship.

Each year, the American Society of Clinical Oncology conducts an independent review of advances in cancer research that have the greatest potential impact on patients’ lives. This year, Clinical Cancer Advances 2011 features 54 significant studies, including 12 that the report’s editors consider major advances.

This year’s Clinical Cancer Advances report also recaps the year’s most important cancer policy developments and ASCO policy initiatives that are likely to influence cancer care over the coming years. These include developments that could help to accelerate the pace of clinical cancer research progress and ensure access to quality cancer care for patients.

Anyone who is impacted by or interested in cancer research, treatments and care should look at this report.

This article and more can be read on the Patient Navigator December 2011 newsletter.

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Cancer research continues to yield exciting breakthroughs as scientists learn more about the molecular and biological activity of cancer cells.

One important new area of research is called autophagy.  Haven’t heard of it?  You will.  Here is a simplified explanation.  When cancer cells are mired deep in the core of a tumor, they have limited access to oxygen, growth factors and nutrients from the blood vessels that feed the tumor.  So when things get tough for cancer cells, they start eating themselves to get what they need to survive.  This is autophagy.

Normal cells rely on autophagy to maintain a balance or during times of stress. Cancer cells do too, not just to survive in the inhospitable environment of a tumor, but also to ward off the effects of chemotherapy and radiation.

When autophagy is activated, (when the “self-cannibalism” begins) it is “an intrinsic cell-survival mechanism that cancer cells turn on to recoup essential building blocks when they’re being poisoned or irradiated,” according to Dr. John Cleveland of The Scripps Research Institute.

Therefore, a greater understanding autophagy’s role in cancer has led researchers to investigate whether blocking autophagy can make cancer treatments more effective, cutting off what amounts to an important escape route.

The research is in early stages and there may be substantial differences in the autophagy activity in different cancer types, or even from tumor to tumor.  Still, according to Dr. Ravi Amaravadi from the University of Pennsylvania Abramson Cancer Center, the available evidence suggests that autophagy “seems to be a process that could be important in many cancers.”

A number of clinical trials testing autophagy inhibition are actively recruiting patients with a variety of cancers, including breast, colorectal, myeloma, and chronic lymphocytic leukemia.  They are testing an off-patent drug called hydroxychloroquine, or HCQ.  The largest trial to date involving HCQ is for patients with newly diagnosed glioblastoma multiforme, a brain cancer. There is also a Phase I/II trial testing authophagy inhibition in patients with stage II or III pancreatic cancer.

The September 7, 2010 issue of the National Cancer Institute Bulletin contains the complete article from which this summary is drawn.  To dig deeper, consult the American Society of Clinical Oncology’s work in this area.

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A recent Washington Post/Kaiser family foundation article offered an alarming look at many Americans’ low level of health literacy, defined by the Department of Health and Human Services as “The degree to which individuals have the capacity to obtain, process, and understand
basic health information and services needed to make appropriate health decisions.”

The article cites a study released in 2006 study by the U.S. Department of Education that found that 36 percent of adults have only basic or below-basic skills for dealing with health material.  This means that 90 million Americans can understand discharge instructions written only at a fifth-grade level or lower. About 52 percent had intermediate skills: they could figure out what time a medication should be taken if the label says “take two hours after eating.”

The remaining 12 percent were deemed proficient because they could search a complex document and find the information necessary to define a medical term.  Adults who were ages 65 and older had lower average health literacy than adults in younger age groups.  Less educated and minority groups generally had lower levels of health literacy.

The Surgeon General of the United States has also tackled this subject.  Because only 12% of Americans have proficient health literacy skills, the majority of adults may have difficulty completing routine health tasks like understanding discharge instructions or diabetes care. There is a strong, independent association between health literacy and health outcomes. These outcomes include emergency department use, hospitalization, self-reported physical health, and mortality.

Interventions to mitigate the effects of low literacy in patients with chronic
conditions have been shown to improve health outcomes. In some cases, the interventions appear to be more effective for low literacy users compared with higher literacy users.  A fascinating January 2011 article in the New Yorker by Dr. Atul Gawande documents this point perfectly.

The Surgeon General concludes:

• First, public health professionals must provide clear, understandable, science-based health information to the American people.  In the absence of clear communication and access to services, we cannot expect people to adopt the health behaviors we champion.

• Second, the promises of medical research, health information technology, and advances in health care delivery cannot be realized without also addressing health literacy.

• Third, we need to look at health literacy in the context of large systems – social, cultural, education and the public health system.  Limited health literacy is not an individual deficit but a systematic problem that should be addressed by ensuring the health care and health information systems are aligned the needs of the public.

In an era when individuals are increasingly required to fend for themselves, health literacy is indeed a public policy issue.  Patient navigators and advocates obviously fulfill a vital need here.  Indeed, we here at Patient Navigator help to educate and empower our clients.  But the problem is massive and the resources small; there is no easy answer.

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There are several important changes on the horizon this year as additional provisions of the health care law are implemented.  Here are a few.

Seniors are affected by several of the provisions. They will get big discounts on prescription drugs.  Prescription drug costs (Medicare Part D) could go down by $700 for a typical Medicare beneficiary in 2011.

Several provisions of the law promote prevention of disease, especially for seniors. Medicare enrollees will be able to get many preventive health services – such as vaccinations and cancer screenings - for free starting in January.

Medicare is increasing up payments for primary care by 10 percent from Jan. 1 through the end of 2015. It’s an incentive for doctors and others who specialize in primary care – including nurses, nurse practitioners and physician assistants – to see the growing numbers of seniors and disabled people covered by the program

Beginning soon after the Food and Drug Administration finalizes rules  in 2011, chain restaurants with 20 or more locations, and owners of 20 or more vending machines, will have to display calorie and fat information on menus, menu boards and drive-thru signs.

Consumers with flexible spending accounts (FSAs), in which pre-tax income can be used for medical purchases, can no longer spend the money on over-the-counter drugs, including ones that treat fevers or allergies and acne, unless they have a doctor’s prescription. The new restrictions, which lawmakers included in the health overhaul to raise more revenue, also apply to health reimbursement arrangements (HRAs), health savings accounts (HSAs) and Archer medical savings accounts (MSAs).

Starting this year, health insurers must spend at least 80 percent of their premiums on medical care, or face the possibility of giving rebates to consumers.  (Editorial note:  don’t hold your breath for any rebates).

For a useful timeline of all the changes coming this year, check the Kaiser Family Foundation website. The U.S. Government’s timeline of what’s changing and when is also helpful.  Bottom line:  Stay Informed!

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Since I first wrote on this topic in April 2009 and February 2010, things have moved quickly on multiple fronts.  I receive frequent inquiries about training and job opportunities and will try to address them here.

Patient navigation and patient advocacy as a new and emerging profession is gaining attention, both in the media and in the popular lexicon, because it fills so many gaps in the current American health care system.

You may have seen from my Patient Navigator website how I came to be a patient navigator (advocate, medical mentor, cancer coach) as a second career.  A March 2011 profile in MORE magazine offers more information both about my own journey and about patient navigation generally.  A radio and press interview I’ve given are posted on the Patient Navigator homepage to further elaborate on patient navigation as a new field offering services on many levels.

Key Developments

In terms of the profession of patient advocacy, the most exciting thing to have happened in the past couple of years was the August 2009 launch of The National Association of Healthcare Advocacy Consultants (NAHAC), the professional association representing private patient navigators and advocates.   NAHAC is committed to developing guidelines on best advocacy practices, ethical standards for health advocates, educational and professional development content to assure high professional standards and public awareness of those standards.

NAHAC membership is open to those who are interested in the field of healthcare advocacy.  They may be prospective advocates, medical professionals, consumer advocates, academicians, researchers or people involved in policy and legislative efforts.

I am Vice President of NAHAC and we have held two national conferences in our short 18 months of existence – November 14-15, 2009 in Berkeley, California and the November 4-6, 2010 in Washington, D.C.  which I chaired.  Members of NAHAC can listen to podcasts of all the speakers and workshops from both conferences.  I encourage prospective advocates to join NAHAC to learn and to become part of our growing network.

Another key development is a company called AdvoConnection,  founded by Trisha Torrey in 2009 to create a national directory of patient advocates and a way for consumers to find them.  Since then, AdvoConnection has added many marketing and business development services for its members.  Trisha has written extensively on the business side of becoming an advocate.  Her recent summary of the evolving work of advocates is useful and contains other links to learn more.  She offers a membership for folks considering this profession.

The Landscape

But to those just hearing about patient navigation or advocacy for the first time (and for many of you realizing that what you’ve been doing all these years has now been given a name),  I want to paint a brief picture of the larger “navigator” landscape in which advocates work.

Hospitals

An increasing number of hospitals in the U.S. and Canada employ navigators to help patients manage their hospital stays but don’t extend services beyond discharge.  Those hospitals usually require nursing degrees and frequently work with breast cancer patients (because there is funding available from private foundations such as Susan G. Komen).  A hospital based-patient advocate works for the hospital which is quite different than the interests that private advocates represent.

Organizations

The American Cancer Society trains navigators in some cities to work with underserved populations.  They get funding, in part, from the NCI program to train navigators.

The National Institutes of Health, National Cancer Institute is funding several patient navigator pilot projects across the U.S. in underserved and minority areas and trains navigators working in those projects.  A Colorado hospital is one of those projects and they conduct training.

Much of this work is based on the model set by the pioneer in breast cancer patient navigation  Dr. Harold Freeman in Harlem to develop community-based navigator programs.  His program offers training to some individuals, groups and non-profits seeking to work to narrow disparities in access to cancer care.

Training, Certification and Credentials

Patient navigation/advocacy is a new undertaking that has really gained traction over the past three years.

The key point is that there is no nationally recognized license, credential or certification at this point in time.  Patient advocates are not regulated by states nor is there any credentialing requirement for someone to say they are a patient advocate or navigator.  If you are considering a certificate or training program, please read the important article posted here that goes into more detail.

NAHAC foresees that there will come a day when a nationally recognized credential is required and part of our mission as the professional organization is to set the standards, best practices and code of ethics for this industry.

That being said, there are plenty of organizations and institutions offering some kind of patient advocacy certificate or credential.  Most have sprung up in the last year or two.

I am listing some of them but I have no recommendation or insight on any of them in particular beyond what folks have mentioned to me.    Here is an additional list, prepared by Trisha Torrey, that also lists training programs.

The University of Miami offers the nine-month Alfus Patient Advocacy Online Certificate Program.

The oldest formal health advocacy program in the United States, the Sarah Lawrence College Master’s Program prepares students for a variety of types of advocacy careers, including assisting individuals, focusing on community health, or working in health policy.

Dr. Harold Freeman’s program in New York City offers training to some individuals, groups and non-profits seeking to work to narrow disparities in access to cancer care.

The University of Wisconsin at Madison offers a Consumer Health Advocacy Certificate program.

Cleveland State University offers a Patient Advocacy Certificate Program.

The Integrative Medical Clinic Foundation and Sonoma State University in California offer a Patient Navigator Certificate Program with an Integrative Health specialty.

I have personally taken the credentialing program offered through the Society of Certified Senior Advisors and recommend it highly.  For anyone planning to work with the elderly in any capacity, this training  will help you immensely.

Joanna Smith, the CEO of Healthcare Liaison who is also the President of the National Association of Healthcare Advocacy Consultants, offers training workshops for how to become a patient advocate as well as a full credentialing program for medically trained individuals.

Locally, in the Washington, D.C. area, the Smith Farm Center for the Healing Arts offers community patient navigation training.

What Does It Take To Do This Work?

Most of us who do this work come to it through our own experiences dealing with the health care or elder care system (whether as a patient, caregiver, nurse, social worker, etc.)  In most cases, there is no specific background or education that is required.  I have found that a passion for helping others, good research, communication, interpersonal and organizational skills as well as the ability to be creative in finding resources and solving problems are what it takes.

However, earning a living from this work is a different story.   Patient advocate Trisha Torrey wrote an excellent article about job prospects for patient navigators/advocates.  My basic advice to folks is that unless you have another source of income, don’t expect to earn a living wage quickly if you set out on your own.

For more on setting up an advocacy business, you can check out this guide.

How To Join Our Efforts Now

In order to connect folks throughout the U.S. who are interested in this field, I have formed a virtual “Patient Navigator” working group through LinkedIn, the professional  networking site.

Please consider joining my LinkedIn group as we collaborate to build this profession.  Just go to LinkedIn to set up a profile and then ask to join the Patient Navigator group. Please include an explanation of why you’d like to join the group.  This way I can get to know allies around the country and hopefully grow our network and collaboration.  It’s a good way for everyone to make contacts.

Please add your comments or additional information to this post!

Thank you.

Elisabeth Russell, Founder and President, Patient Navigator, LLC

erussell@patientnavigator.com

February 20, 2011

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I received the news last week – two more friends have been diagnosed with breast cancer.   I cried.  This is the fourth friend in less than two years that has been diagnosed with cancer – a diagnosis that is frightening, life-altering and potentially life-ending.

This isn’t fair.  Why is this happening?

These are all women in their 30′s and 40′s.  None of them scores high on the list of risk factors.  My friend Nadine eats very well – almost no refined sugar, lots of vegetables and healthy complex carbs, proteins.  She breastfed her children for years.  She exercises every day.   She even rode her bicycle to and from chemotherapy appointments – a huge inspiration to everyone!  Elaine, who has just received her diagnosis, is the mother of a still-nursing infant.  Her whole family eats organic meats and produce, locally grown as much as possible.  She is not obese.  They exercise and try to minimize the toxins in their environment.

With so many of the risk factors removed, why are they still getting cancer?

It makes me so very angry that the only answer is “we don’t know.”  Sometimes lightning just strikes and we don’t know why.

To each of my friends, I have reached out to offer what help I can.  I have given them a copy of Patient Navigator’s “Cancer Diagnosis – 10 Things You Need to Know.” I have offered to help with their family responsibilities, research treatments and go to appointments with them.  I offer food and support.

It doesn’t feel like it is enough.  Especially when they look at me and ask ‘Why?”

Guest editor:  Debora Harvey, Patient Navigator LLC

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This month’s educational newsletter covers the following topics:

Rising Costs of Cancer Care vs. Cancer Prevention

What’s on the Health Reform Horizon?

Food Science – Part 5

Come take a look and become a subscriber!

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In our society, women are generally conditioned to “play nice” and work well with others.  Unfortunately, this can easily translate into failing to be assertive and advocate for ourselves when it is needed.

I recently was asked to do some research about obtaining a second opinion for a friend looking into treatment options.  While I was investigating, I came across a profound website and video called “Give me a Second” which clearly and provocatively illustrates the reluctance of many women to seek additional opinions when faced with a serious medical treatment decision.

According to the website, seven conditions that for which women should absolutely seek a second opinion include:

1. A diagnosis of cancer, especially breast or gynecological
2. Heart Condition/recommendation for bypass surgery
3. Diagnosis of a brain tumor
4. Unresolved menstrual/gynecological problems
5. Autoimmune disease, such as lupus or rheumatoid arthritis
6. Irritable Bowel Syndrome
7. Varicose Veins

Although these conditions vary in severity, they have a commonality – there are substantial variations in the recommended treatments for each, ranging from the minimally invasive to the more conservative and aggressive.  Each approach has its own risks and benefits which need to be taken into consideration with each individual’s own specific diagnosis and preferences.  There is never a one-size fits all treatment for any medical condition.

Why are people so reluctant to pursue a second opinion? The reasons range from fear of delaying treatment for even a day or a week, to concern of disappointing or angering the initial doctor, to simply being uncomfortable speaking up for ourselves.  Unfortunately, not all doctors respond positively when advised that their patient wants a second opinion on a diagnosis or treatment plan, and not everyone is aware that the option of speaking with another doctor even exists.

But in the case of the conditions listed above, and many others, seeking a second opinion may be a life-saving move.

CancerGuide.org provides a comprehensive summary on seeking and evaluating a second opinion for cancer diagnoses and treatment planning.  You can also look at the fact sheet from the American Society of Clinical Oncology.

Having more than one opinion from specialists in the field can make the patient more confident that the diagnosis and treatment regimen is the correct one for them, creating a more positive and trust-based relationship between the patient and care providers.

Guest editor:  Debora Harvey, Patient Navigator LLC

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Please visit our January newsletter.  This month’s topics discuss:

• the launch of the new Patient Navigator website with additional products, services and discounts for our clients

• the National Cancer Institute’s reorganization of the system of clinical trial cooperative groups and how that should improve the efficiency of clinical trials in the age of molecular oncology

• introduction in our Food Science series of the acid-alkaline balance in our food as another way to plan a healthy diet

We welcome your comments and suggestions for future articles!

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