Patient Navigator

Patient and Medical Advocates to Guide Your Journey Through Illness

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.

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

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

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

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

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

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

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

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

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

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

  • the launch of the new Patient Navigator website with additional products, services and discounts for our clients
  • the National Cancer Institute’s reorganization of the system of clinical trial cooperative groups and how that should improve the efficiency of clinical trials in the age of molecular oncology
  • introduction in our Food Science series of the acid-alkaline balance in our food as another way to plan a healthy diet

We welcome your comments and suggestions for future articles!

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