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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Long-Term Care (LTC) insurance can be a sensible purchase for folks who expect that they will need caregivers as they grow older.  Unless you are very poor and eligible for Medicaid, or very wealthy and can afford to spend a significant portion of that wealth on caregivers, LTC insurance is worth considering.  Once they’ve paid years of premiums, consumers rightly expect that their LTC insurance policy will pay for this care, whether it is at home or in a facility.

Unfortunately, the vendors of these policies use almost every weapon in their arsenal to avoid paying benefits.  In the past year, I have been working with a family who bought long-term care insurance coverage for both husband and wife many years ago.  They had been paying the monthly premiums regularly.  By the time they needed to trigger the policy for their care needs, they had paid over $100,000 in premiums.

One would expect that the insurance carrier, having been paid so much money, would make it easy for this family and the care providers to obtain the benefits.  Sadly, the opposite was true.

For example, invoices from the in-home care agency were mysteriously “lost.” Multiple times.  The two fax machines that are designated to receive the invoices are over-worked and frequently out of service.  The processing times are so long that it takes months before we can determine if an invoice has even been received.  The ability of Customer Service to actually help solve a problem is inconsistent at best.

I have been told by my client’s in-home care provider that this is not unique to my client, or to their insurance carrier.  This provider has the same problems with most of the carriers, for most of her clients.

Why do insurance providers make it so difficult to navigate their systems to collect the benefits for which consumers have already paid thousands of dollars?

Basically, insurance is about gambling.  The insurance companies gamble that they can take in more money in premiums than they pay out in benefits.  They put low-cost systems in place that make it more challenging for their policy-holders to track and receive all the payments for which they are eligible.

In the case of my clients, the wife passed away mere months after beginning to receive benefits.  By rough calculations, the insurance company collected $60,000 more than they paid out on her case.  In reality, it took months of repeated faxes, phone calls and escalations to managers to actually generate the payments that were finally made.

Thousands of policy-holders do not have the time, mental acuity or energy to persist in their efforts to force the insurance carriers to pay up.  So the most vulnerable – sick, elderly people – are, once again, taken advantage of by the companies that are entrusted with their financial care.  Why are we not surprised?

Become a smart consumer.  For more information, you can download a free brochure from the Society of Certified Senior Advisors as well as other excellent resources in their public library.

Submitted by Debora Harvey, Patient Navigator LLC

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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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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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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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The October edition of Navigator Notes contains articles on:  a new appeal option for insurance denials;  cancer cell autophagy (self-cannibalism) and Part 2 of our Food Science series.   The newsletter is brought to you as part of Patient Navigator’s education initiative.

Check out my @constantcontact newsletter.

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The September edition of Navigator News includes articles on:  Understanding Palliative Care; The Fine Print of your Insurance Policy; and Food Science Part 1.   We welcome your feedback!

http://myemail.constantcontact.com/Navigator-Newsletter—September-Edition.html?soid=1103192011442&aid=C2KCCMiqSHU&share=fblike.

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A recent survey revealed that 91 percent of physicians surveyed practice defensive medicine – they regularly order more tests and perform more procedures than are medically necessary in order to protect themselves from the possibility of being sued for medical malpractice.

This survey, by a team of researchers from Mount Sinai School of Medicine, confirms that the fear of being sued is very real and pervasive throughout the entire spectrum of medical practice.

In addition, those surveyed responded that the “overwhelming majority of physicians support tort reform to decrease malpractice lawsuits and that unnecessary testing, a contributor to rising healthcare costs, will not decrease without it.”

Defensive medicine is expensive, inconvenient to both doctor and patient, compromises the relationship between provider and patient, and has no basis in evidence-based medical practice.

Unfortunately, the practice of defensive medicine decreases patient access to health care, and increases costs of healthcare for everyone.  Some patients are left in the lurch as physicians avoid the sickest patients, or those requiring higher-risk procedures, in order to reduce their exposure to malpractice suits.

A 2008 study by the Massachusetts Medical Society found that 83% of its physicians practiced defensive medicine at a cost of more than $1.4 billion annually in that state alone.

To me, $1.4 billion in one state translates at a conservative estimate to at least $30 billion annually throughout the country.

I find the dollar cost of the practice of defensive medicine disturbing.  I find the cost of the doctor-patient relationship, in which the physician views every patient as a potential lawsuit, rather than a person in need of healing, frightening and discouraging.

More medicine is not better medicine.  Evidence-based, patient-centered medicine is better medicine.

Submitted by guest editor Debora Harvey

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When faced with a decision about your own or a loved one’s medical care, you are often overwhelmed by the sheer immensity or complexity of the situation.   It is very tempting to accept a doctor or other medical care provider’s prescription for treatment and proceed directly.  Many doctors are amazing – helping patients understand the scope of their condition, their treatment options, and why one recommended course would be better for them than another.

However, sometimes people are discouraged from asking questions or doing research that would make them more comfortable with the proposed treatment plan, or even expose them to options that have not been considered.  Sadly, some care providers perceive that they are being “challenged” when a patient asks questions; others simply don’t take or make the time for a patient’s questions.

This type of situation is terribly unfortunate. It is only by communicating openly and fully with your care providers that you can make the decisions that best meet YOUR needs. Every person has the right to fully participate in all decisions regarding his or her own health care.

This legal doctrine is called the right to informed consent. The World Health Organization, the European Parliament, the American Hospital Association and many other organizations support and endorse the right of all people to make their own healthcare decisions in consultation with their caregivers.

The website  http://www.informedmedicaldecisions.org is dedicated to supporting and educating people on their rights to actively participate in medical decision making.

As a patient or caregiver, you have the right and responsibility to obtain as much information as you need to be able to commit to a course of treatment or test process. Some questions/statements that can help get the information you need include:

• Can you explain this to me?

• Where can I get more information?

• Can you write this down? Draw me a picture?

• How is this helpful to me?

• Are there any risks involved?

• Can you recommend a safe alternative?

• What are the probable side effects? What percentage of people experience these side effects?

• Does my insurance cover this treatment?

• What is the time frame for this decision – immediately, days, weeks, months?

• If I choose not to go ahead with this recommendation, what would the consequences be?

• How much time would I have to get a second opinion?

• I want to think about this before I make a decision.

• I don’t feel comfortable with this recommendation.

• Is there any else I can do or try?

By becoming actively involved in your care, you are likely to be more satisfied with your decisions.  Both patients and doctors benefit when patients are well-informed and play a significant role in deciding how they are going to treat or manage their health conditions.

Informed patients feel better about the decision process. Their decisions are more likely to match up with their preferences, values, and concerns. These patients are more likely to stick with the regimens the treatment requires, and they often end up rating their health after treatment as better.

Submitted by Debora Harvey, Patient Navigator

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