Patient Navigator

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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Scientists have mapped specific genes that turn normal healthy cells into cancerous cells through The Cancer Genome Atlas Project (TCGA).

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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In honor of Valentine’s Day, I thought I’d write about one of my favorite guilty pleasures, CHOCOLATE!  Chocolate can be good for you.  Sure, a chocolate bar loaded with caramel and/or nougat carries few health benefits, but dark chocolate has been found to have many heart-healthy benefits that are otherwise absent in milk or white chocolates.

A healthy heart allows your body to work properly by supplying it with the right amount of blood, flowing at the correct rate.   A diseased or injured heart, however, has to work overtime to allow your body to function well.

Here’s where the dark chocolate comes in.

Research has shown that dark chocolate improves blood vessel functioning, thus lowering blood pressure, taking stress off your heart and helping your blood circulate more efficiently.   Dark chocolate also has antioxidant qualities, which come from flavonoids found in cocoa.  Flavonoids are naturally occurring plant based compounds that repair and protect plants from harmful environmental substances.  When consumed by people, flavonoids provide an antioxidant that can repair cell damage from toxic substances, such as cigarette smoke.  Due to its antioxidant nature and cancer prevention possibilities, researchers agree that cocoa needs to be further studied.

While this is certainly welcome news, remember, everything in moderation. Eating your required daily intake of fruits and vegetables remains the number one way to stay healthy, but indulging on a piece or two of dark chocolate a week is a good thing!  So on Valentine’s Day, nothing says “I love you” like some delicious, dark chocolate.

For more information on dark chocolate and your heart, please visit;

http://my.clevelandclinic.org/heart/prevention/nutrition/chocolate.aspx

Submitted by Heather Matthews, Cancer Research Specialist at Patient Navigator LLC.

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A caregiver is someone who takes you to your doctor’s appointments, drives you to and from treatment, helps with activities of daily living, listens to you and lends a shoulder to cry on.  A diagnosis such as cancer can shake the foundation of any family and caregivers play a vital role for loved ones diagnosed with a serious illness.  Not only is the patient required to drop everything to focus on their treatment plan; caregivers must also, to some extent, put their life on hold to fill an important role.

All too often, however, caregivers’ needs go unmet and the burden they share goes unrecognized.  Doctors, nurses, family and friends make sure the patient comes first, and rightfully so.  However, caregivers also suffer as they watch a loved one battle illness.  Caregivers can feel as though they’re not doing enough to make their loved one comfortable or happy, despite their heroic efforts.  Caregivers can also receive the brunt of a patient’s anger, since typically this role  is filled by a person close to the patient.

The Journal of General Internal Medicine recently released ethical guidelines addressing patient, physician, and caregiver relationships. The medical community is increasingly respecting the role of caregivers and offering guidance on how to develop that relationship.  The guidelines aim to focus on a family-centered approach to treatment thereby decreasing the caregivers’ susceptibility to stress-related illness.  One such recommendation states that physicians should be more accessible and allow for more effective communication not only to the patient but also to the caregivers.

Remember that it’s important for caregivers to be mindful of their own health and needs. Take time out to go for a walk, rest, go to a movie.  Many communities offer respite services to give you some time away.  It can also be very helpful to seek out a caregivers support group in your local community.  Strength is gained when experiences are shared.

For more information and resources for caregivers, please visit the following sites:

http://www.cancer.gov/cancertopics/coping/familyfriends  – National Cancer Institute

http://www.cancer.net/patient/Coping/Caregiving American Society of Clinical Oncology

http://www.cfad.org/  Caring from a Distance

http://www.caregiver.org/caregiver/jsp/home.jsp  Family Caregiver Alliance

Submitted by Heather Matthews, Patient Navigator Cancer Research Specialist

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Access to investigational therapies is a highly debated topic in the medical world.  Investigational therapy involves drugs that are being scientifically tested but not yet approved by the Food and Drug Administration (FDA). Often these drugs are offered through programs such as “compassionate use programs,” and “expanded access programs” to allow seriously ill patients access to new drugs before they have obtained FDA approval.

The processes of acquiring FDA approval can, in some instances, take up to ten years.  In the interim, because of where they are offered (typically in large cities), the associated costs (many insurance companies do not cover experimental treatments), and the strict eligibility requirements, most patients have limited access to these potentially life-saving therapies.

The FDA has realized the need for an overhaul.  In the past year, representatives from the FDA, the pharmaceutical industry and the medical profession have convened to re-interpret the rules and regulations of investigational therapies to form a new framework that allows greater access to more patients.

One such change centers on whether drug manufacturers can charge for the investigational trial drug.  Before, the regulations were unclear on what the manufacturer could charge and for what.  Under the new guidelines, the FDA has made it very clear that manufacturers can recover the cost of the product but can not make a profit.   The FDA hopes that with costs down, more people will seek out investigational therapies as a treatment option.

Additionally, the FDA is now requiring full-safety reporting for all patients in compassionate use programs, a requirement that exceeds the usual reporting protocol for serious adverse events.  While in theory this is good medical practice, companies could be resistant to this regulation since it would require more staff to follow up on patients, thereby raising a company’s bottom line, which could turn a company away from implementing compassionate use programs. 

While it is a positive development that the FDA has recognized the need for change, it is still a complicated process to gain access to investigational, but potentially life-saving therapies.  

To learn more about the new FDA guidelines and expanded access programs, please visit. http://www.medscape.com/viewarticle/711719.  You should also read the National Cancer Institute’s Fact Sheet on investigational drugs at:  http://tinyurl.com/ybmh4mk.

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