A who? A patient what? A Patient Advocate.

The first time I ever heard of a patient advocate was when I attended a talk given by Melissa Pantel-Ku.  Melissa is remarkable woman.  Diagnosed with stage III breast cancer at 34, she is a PhD, a professor, a mother, a wife, a breast cancer survivor, and founder of  Hope & Humor.  Melissa’s story had quite an impact on me.  She herself is was not an official patient-advocate-for-hire, but now shares her story with others, in hopes they will take charge of their health.  This is the story of a woman who wanted to be a proactive advocate for her own health- she wanted to prevent breast cancer before it happened- but she was shot down time and time again, told that she was exaggerating her own risk of breast cancer.  Turns out she wasn’t.

So what do patient advocates do, exactly?  Exactly is a relative term, because outside of hospital sponsored patient navigators, this role is relatively new to the healthcare industry.

Let’s start with hospital provided patient navigators.  Those of us working in cancer care know how truly amazing and valuable these healthcare professionals are.  A patient’s journey through the cancer continuum is a complex process. Patient navigators help to individualize patient experience and can help to lessen some of the fear and confusion that patients may experience.

cancer diagnosis navigation: PUGTATO

Cancer patient navigators can specialize  in different types of disease- working specifically with breast, colon, or other types of cancer. They are generally nurses and have specialized certification in patient navigation.These dedicated professionals help patients to understand their surgical, treatment, and follow-up options throughout a cancer diagnosis. Navigators can help to ensure that a patient’s care follows the care and treatment guidelines set forth by institutions like the National Comprehensive Cancer Network. The National Comprehensive Cancer Network is “a not-for-profit alliance of 21 of the world’s leading cancer centers, dedicated to improving the quality and effectiveness of care provided to patients with cancer.”  Patient navigators can also connect patients with resources like support groups and financial assistance.  The services that a hospital sponsored cancer navigators provide vary based on institution and are free to patients.

External patient advocates are different, and not all patient advocates are created equally.  This is important.  There is no certification required to become a patient advocate.  These professionals work directly for patients and are (generally) fee based.  They may attend doctor’s appointments with patients, and can be involved in coordinating care, financial aspects, insurance, billing, home health, and legal affairs.  Because there is no certification required, and no real standard for this profession, I suspect this is part of the reason that patient advocates can be met with a less than positive response from healthcare providers.

Providers may feel they have to practice “defensive medicine” when a patient advocate is involved.  However, with a better understanding of the role a patient advocate plays, providers will see that for those who do not deal with the healthcare system and complex diagnosis day-in and day-out, having someone in your corner to help decipher information, and lead you on your way is not an attempt to slap on the wrist, but an attempt to make the whole patient experience a little less overwhelming.  As I read about patient advocates, I am learning that many have moved into this role due to a personal experience with a fragmented care continuum that left them with a less than desirable patient experience. Internally motivated to make change, these advocates are certain to be movers and shakers in the healthcare industry, and data suggests this career is on the rise.

The key takeaway is this:

Be empowered. Ask lots of questions.
Make informed decisions.

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