Patient Navigator

In the Washington Post on Tuesday, July 13, there was an article titled “Basic Practices Could Help Prevent Hospital Infections.”

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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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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The Internet is an amazing tool for people researching health conditions, possible treatment options or medical specialists.  An unlimited amount of information is available at the click of a mouse.  This is good, right? 

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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A cancer diagnosis is an emotional earthquake, unleashing fear, anger, sadness, confusion and uncertainty.  Your life has been turned upside-down, your future is at risk and at stake and you feel betrayed by your body.  Your colleagues, family and friends are shocked and afraid and you must begin to deal with the extensive medical, financial and emotional hurdles involved with a cancer diagnosis. 

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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The March 4, 2010 New York Times included the following article which discussed the emerging profession of health navigators and patient advocates.  Take a look.   http://tinyurl.com/healthnavigatorNYT

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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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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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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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To the general public, these words can be overwhelming.

Even to people in the healthcare industry or those helping a loved one cope with a serious illness, the words “clinical trials” can conjure up images of desperate medical experiments with little hope of success. In reality, this stigma is unwarranted. Medical advances and breakthroughs can and have resulted from clinical trials. Without them, we wouldn’t have many of the treatments we have today. 

In short, clinical trials are research studies that allow for new and promising therapies to emerge from the laboratory to the bedside, comparing new, investigational therapies against the standard, current therapies.  Trials occur in well-defined phases.

Phase I trials:  These first studies in people evaluate how a new drug should be given (by mouth, injected into the blood, or injected into the muscle), how often, and what dose is safe.  A phase I trial usually enrolls only a small number of patients, sometimes as few as a dozen.

Phase II trials:  A phase II trial continues to test the safety of the drug, and begins to evaluate how well the new drug works.  Phase II studies usually focus on a particular type of cancer.

Phase III trials:  These studies test a new drug, a new combination of drugs, or a new surgical procedure in comparison to the current standard. A participant will usually be assigned to the standard group or the new group at random (called randomization).  Phase III trials often enroll large numbers of people and may be conducted at many doctors’ offices, clinics, and cancer centers nationwide

Often patients seek out clinical trials after all other standard therapies have failed. To qualify, a patient must complete a physical exam, give a full medical history and, if eligible, sign a consent form before receiving the experimental drug. 

The rules and regulations vary from trial to trial and a person’s past treatment history can dictate whether they are eligible or ineligible. Additionally, many insurance carriers restrict access to clinical trials, often denying coverage for doctor visits, laboratory tests, or medications associated with trials. Out of pocket expenses can be astronomical and make trials an unaffordable choice for many.  

Recognizing a need for change, the medical community and certain state legislatures have been trying to secure better coverage for clinical trials. Just recently, Texas, Oregon, and New Mexico passed laws requiring an improved level of care for people involved with clinical trials.  Even the sickest patients have a powerful voice, Use yours to seek from your legislators better insurance coverage to help gain access to potentially life saving clinical trials. 

To learn more about clinical trials, the National Cancer Institute’s site at www.cancer.gov There is an entire section devoted to clinical trials, including public search engines.   

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

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This useful article from the National Comprehensive Cancer Center discusses cancer navigation options and defines different types of assistance that may be available.  Patient Navigator LLC is featured as a resource.   The article describes ways that navigators and case managers can help, including eliminating barriers to treatment, and it suggests other sources of support. 

The Case Manager or Patient Navigator: Providing Support for Cancer Patients During Treatment and Beyond – nccn.com.

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