It was written by a ten year old boy.

Depression feels like a fog

of invincible sadness has

been thrown out onto the world.

It smells like wet rotten eggs

that have been left out for the rats.

It’s blue like the feeling at a funeral.

It looks like a dark room with nothing

in it.   Depression kills like an angry

tiger in a jungle of sadness.  It sounds

like a roar of frustration boiling down

deep inside.   Depression crawls like a

baby that has given up the will to walk.

Depression is slow and scaly like an

old snake dying out.

Depression hurts everyone.

How sad that this boy could have such a significant insight into the world of the depressed mind at such a young and supposedly innocent age.   Whether he is experiencing depression himself, or seeing a family member struggle, it is hurting him, deeply.

Our words and actions, especially those unspoken or left undone, are absorbed by children.  Children observe and imitate from the time they are born.  It is their lifeline, their whole existence.  They have to understand the adults around them in order to survive.

With depression and anxiety so prevalent in our society, it is not surprising that a great number of young people report these  feelings.  Kidshealth.org has understandable explanations and examples of what childhood depression is and how it affects the lives of young people.

Although depression is a mental illness that is well treated with medication and/or cognitive therapy, there is still a stigma associated with depression in some circles.   Mental Health America offers a quick screening tool, but there are others that help people understand the symptoms and treatment options.

Where to find help and information:

National Institute of Mental Health

National Strategy for Suicide Prevention

National Mental Health Association

Depression and Bipolar Support Alliance

If depression is affecting your life, the life of a child you know, or someone you love, help is available.  You can reach out and make a difference.

Submitted by guest editor Debora Harvey, Patient Navigator LLC

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I went to pick up my hearing aids yesterday.  These are fairly new, only a few months old, yet I have had to send them back to the manufacturer twice so far, and I am not confident that they will work well even now.  The irony is that I paid $3,000 out of pocket for these assistance devices.  They are not covered by my health insurance.  I do have a “discount program” that enables me to go to a provider that has an agreement with my insurance provider, who supposedly charges me less than the current market rate for these devices.  Unfortunately, I am much less than satisfied by both the quality of the hearing aids, and the competence of the “audiological specialist” to whom my insurance company has steered me.

I was in my twenties when diagnosed with a hearing loss significant enough to need amplification. I resisted the need for hearing aids, but the doctor explained to me that, unless I could get the sounds to my brain, my brain would slowly lose the ability to recognize sounds and speech.  Even if my hearing were miraculously restored, I would be unable to understand the words people spoke.

According to the American Speech Language Hearing Association, hearing loss is the number one birth defect in the United States.  Twenty percent of children have some sort of hearing or speech disorder.  Half of the 28 million Americans with a hearing disability are under the age of 50.

Among other statistics, the National Institute on Deafness and Other Communication Disorders (NIDCD) reports that:

• Approximately 17 percent (36 million) of American adults report some degree of hearing loss.
• There is a strong relationship between age and reported hearing loss: 18 percent of American adults 45-64 years old, 30 percent of adults 65-74 years old, and 47 percent of adults 75 years old or older have a hearing impairment.
• About 2 to 3 out of every 1,000 children in the United States are born deaf or hard-of-hearing. Nine out of every 10 children who are born deaf are born to parents who can hear.

Yet many insurance companies significant limit coverage of audiological services, if indeed they cover them at all.   Medicare, the primary insurance for millions of older Americans, does not cover hearing aids or eyeglasses, basic needs for people who are losing the acuity of sight and hearing as they get older.

It is a matter of economics.  In order to keep private or group premiums affordable for individuals or employers, these type of assistance devices are excluded from coverage.  If Medicare were to include this coverage, its budget would be hundreds of millions of dollars more every year; dollars found in tax increases.

ASHA has an active advocacy program working to improve disability benefits in general, especially those relating to hearing disabilities.   Take a look if you or someone you know needs help.

To learn more about hearing loss and other communication disorders, visit the NIDCD Health Information site.

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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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The article made a very clear point that evidence shows that five basic steps can prevent 1500 deaths per year, reduce catheter-related bloodstream infections by more than 30%, and save $200 million over the first 18 months.  I can see that hospital executives might not have 1500 deaths and several thousand infections on their radar screens. But since many hospitals are striving to eke out profits, I would think that a number like $200 million just might capture their attention.

The very basic five steps that would save lives and costs?  Have practitioners do the following before administering a needle/catheter into the patient’s veins:  1) Wash hands with soap; 2) Clean patient’s skin with antiseptic; 3) put sterile drapes over entire patient; 4) Wear a sterile mask, gown, hat and gloves; 5) put a sterile dressing over the catheter site.

I cannot imagine that washing hands and sterilizing the patient’s skin would be a controversial policy, but apparently so. The article goes on to state that many hospital chief executives are unaware of their institution’s bloodstream infection rates, or how easily those infections can be prevented.  It angers me that the lives and health of so many people are put at risk through neglect and ignorance.

For information on how you can help prevent infections if you or a loved one wind up in the hospital, visit the Campaign Zero website.  Campaign Zero is dedicated to patient safety and reducing medical errors.
Submitted by guest editor Debora Harvey

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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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Unfortunately, the reality is a double-edged sword. Yes, the Internet lets people become well informed, but it has can also foster “cyberchondria” and “analysis paralysis.”

I now see my Great Aunt Frieda in a whole new light.  I’m glad that she lived before the Information Revolution.  You see, Auntie F, as we called her, was a hypochondriac.  She constantly visited her doctor for a multitude of problems.  It was easy then because doctors could spend more time with patients and it cost less.  So her doctor would listen to her, reassure her that she was not dying of the symptom of the week, and see her again in a week or two to hear about her newest issue.   She lived, in nearly perfect health, until a peaceful death at age 95.

The 21^st century gives us a new twist to this story.  “Cyberchondriacs” spend hours at the computer screen, typing in symptoms or fears, wading through the results, both accurate and inaccurate, and convincing themselves they have a certain condition.  Often, they will print out reams of documentation and present themselves to their doctors, having already diagnosed their “condition” and determined a course of treatment.  To make matters worse, bogus information may appear as genuine evidence-based medicine and is often flanked by marketing ploys offering miraculous treatments

In a May 2002 research report, the Pew Internet & American Life Project (www.pewinternet.org) called them “health-seekers.”  “About 6 million Americans go online for medical advice on a typical day,” said Pew in its Vital Decisions report. “That means more people go online for medical advice on any given day than actually visit health professionals (on a given day),” Pew said, comparing the 6 million estimate figures to an unspecified, but lower number provided by the American Medical Association.

What is the cost of cyberchondria?  It is estimated in the millions of dollars and rising every year due to unnecessary visits to the doctor’s office or emergency room, un-needed and possibly invasive tests.

Online medical information is wonderfully helpful and useful in many situations.  But, like anything else, moderation is the key.  Choosing sources wisely, using good sense to edit the results, and getting OFF of the computer when it all becomes too much are important keys to successful use of online health information.  To learn more about evaluating health information on the Internet, visit http://tinyurl.com/Evaluate-Info-On-Internet

Submitted by Guest Editor Debora Harvey, Patient Navigator LLC

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It comes as no surprise that those diagnosed with cancer experience a roller coaster of feelings and emotions at the outset.  However, if feelings of anger, sadness or emptiness persist for an extended period of time or if you are unable to get through your day, it may be beneficial to seek professional help. 

Depression is a condition that affects many cancer patients at one point or another.  In fact, up to 1 in 4 people with cancer do have clinical depression. Clinical depression causes great distress, impairs functioning, and may even make the person with cancer less able to follow their cancer treatment plan. The good news is that clinical depression can be treated.

If you are experiencing depression, speak to your doctor or a trusted friend.  He or she can direct you toward trained mental health practitioners who will help you through these adjustments and treat your condition.  You may also benefit from a support group to gain knowledge and share experiences with others in a similar situation.  For many people, it helps to know you are not alone and to create a network of support and understanding.  This may help you put your cancer in a new perspective and allow you to focus on healing and recovery.  Check with your hospital and community to find a local support group.  Many national advocacy groups sponsor local support groups.

For more information, please visit the American Cancer Society’s website for their definition of depression and suggestions for coping:  http://tinyurl.com/CancerDepression

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Since I first wrote on this topic in April 2009, many people have contacted us wanting to know more about patient advocate or navigator training programs or job opportunities.   Here is a February 2010 update.

Patient navigation/advocacy is a new and emerging field.  It has come about because of the complexity, inefficiency and cost of the current American health care system.  You probably saw from my website (www.patientnavigator.com) how I came to be a patient navigator (advocate, medical mentor, cancer coach) as a second career.  You can also get a sense of the services we offer as well as the range of clients with whom we work.

The most exciting thing to happen in 2009 was the launch of The National Association of Healthcare Advocacy Consultants (www.nahac.com) .  I was elected as its Vice President and we held our inaugural conference November 14-15, 2009 in Berkeley, California.   The next conference will be November 4-6, 2010 in Washington, D.C.  and First Lady Michelle Obama is our invited keynote speaker.  This professional association is the best way to get started in the field of patient advocacy.  I strongly encourage those interested in the field to join (www.nahac.com).

There are several pieces in the “navigator” landscape.

An increasing number of hospitals in the U.S. and Canada employ navigators to help patients manage their hospital stays.  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).

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. http://tinyurl.com/ygll4ca

The National Institutes of Health, National Cancer Institute  http://crchd.cancer.gov/pnp/pnrp-index.html 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:  http://patientnavigatortraining.org/index.htm

The American Recovery and Reinvestment Act is funding additional patient navigator  positions staffed by nurses in some National Cancer Institute-sponsored community hospitals.  To learn more about these job opportunities, see the following NCI article:  “Patient Navigators Ensure Cancer Patients Get What They Need”  January 25, 2010

http://www.cancer.gov/recoveryimpact/page5

Much of this work is based on the model set by Dr. Harold Freeman in Harlem to develop community-based navigator programs -   http://www.hpfreemanpni.org/ They offer training to groups and non-profits seeking to work to narrow disparities in access to cancer care.

I hear often from folks around the country who want to become patient navigators/advocates.  The most comprehensive training program I know of is an online training and certification launched by the University of Miami on September 11, 2009.  It is called the Healthcare Advocacy Certificate Program.     For complete information, visit   http://tinyurl.com/lahzds or http://tinyurl.com/yghstk6

Separately, Sarah Lawrence College offers a Master’s degree in patient advocacy. http://www.slc.edu/graduate/programs/health-advocacy/index.html

I have learned of training at the University of Wisconsin at Madison for certificates in Consumer Health Advocacy  http://www.patientpartnerships.org/certificate.php but have heard it will be up and running in the Summer of 2010.

Cleveland State University offers a Patient Advocacy Certificate Program. http://www.csuohio.edu/ce/certificates/health/pacp/index.html

The University of Phoenix has an online program to become a patient advocate: http://tinyurl.com/yjld3ln.

The President of Healthcare Liaison who is also the President of the National Association of Healthcare Advocacy Consultants (www.nahac.com), Joanna Smith, offers training workshops for how to become a patient advocate: http://healthcareliaison.com/workshops.html.   Her workshops are open to anyone with an interest in the field but are a requirement for those considering the full Credentialing Program.  The full credentialing program for medically trained people runs either 9 months ($2,500) or one year ($3,000).  She refers non-medically trained people to the other programs in this paper.

In Fall 2010, the Integrative Medical Clinic Foundation and Sonoma State University in California will offer a Patient Navigator Certificate Program and expand the role by including an Integrative Health component.  They are found at www.sonoma.edu/exed and then click on Patient Navigator.

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

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.

Patient advocate Trisha Torrey recently wrote an excellent article about job prospects for patient navigators/advocates.  You can read it here:

http://patients.about.com/od/caringforotherpatients/a/patientadvocatejobs.htm

Here is a link to a separate guide published by Trisha Torrey about setting up an advocacy business:  http://patients.about.com/b/2009/03/31/start-a-patient-advocacy-business.htm

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 our virtual group as we collaborate to build this profession.  All you need to do is go to www.linkedin.com 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.  It’s a good way to stay in touch and make contacts.

Elisabeth Russell, Founder and President, Patient Navigator, LLC

www.patientnavigator.com

erussell@patientnavigator.com

Updated March 16, 2010

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Through the TCGA, researchers have now developed a more reliable scientific method to identify these genes.   As this research is shared around the globe, more accessible and effective cancer treatment options are being discovered.  The ultimate goal of the TCGA is to create a catalogue of these “defective” genes, thereby offering increased detection, and ultimately, better prevention and treatment of cancer.     

As healthy cells grow and divide, they not only produce more healthy cells but also kill off cells that are no longer needed.  A cancer cell is produced when an otherwise healthy cell grows abnormally or does not die off when it should.  These cancerous cells then form a mass or tumor.

Through the TCGA, researchers are trying to pinpoint why these specific genes change and how that can lead a cell to become cancerous.  Once this information is gathered, cancer treatment will move to a more targeted form of treatment.  Doctors will target only the abnormal gene, as opposed to today’s standard treatment of chemotherapy, which affects the whole body.  Such a change in treatment will be beneficial because standard chemotherapy kills off cancerous cells but also some healthy cells in the process.  If researchers can instead identify the “defective” genes and target them directly, healthy cells will stay intact and be less affected by the cancer treatment.

For example, the National Institutes of Health recently announced that TCGA identified distinct subtypes of glioblastoma multiforme, the most common form of malignant brain cancer in adults.  In the past, doctors treated this type of brain tumor as a single disease, whereas now they know that glioblastoma multiforme is, in fact, four distinct molecular subtypes.

In addition, through the TCGA, researchers have also discovered that response to chemotherapy and radiation differed by gene subtype.  Although the current standard of treatment will not change overnight, these new discoveries will help doctors to tailor a cancer treatment plan using genetic information.  

Originally a pilot project, TCGA has turned out to be quite a success in demonstrating the value of cancer research.  In the fall of 2009, President Obama announced that the National Institutes of Health will spend $275 million to expand TCGA to other types of cancer, thus opening the door for more specific treatment options and hopefully more cures.

To learn more about the cancer cells we have in our body, please read our January 27 blog post at: http://patientnavigator.com/blog/2010/01/27/we-all-carry-cancer-cells/

For further information on The Cancer Genome Atlas Project, please visit:

http://cancergenome.nih.gov

http://www.nih.gov/news/health/jan2010/nci-19.htm

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