In 2009 a dozen rare cancer patients participated in a round table discussion. The group was animated and fierce about patient empowerment and wanted to help others by creating a methodology and the opportunity for patients to achieve "e-patient" stature.
Board, Advisory Board,
Twelve rare cancer survivors makes a rather powerful discussion group on health literacy. These types of patients become incredibly health literate and empowered since few doctors, except for a small number of specialists, are familiar with the diagnostic procedures and available medical/surgical treatments for their cancers. Why couldn't they share these skills and empower others, especially those at-risk and with low health literacy?
Everyone agreed that because members of the group had a rare cancer that was, in most cases, treated as a chronic illness, they lived in the trenches, which in turn led them to becoming "disease-savvy" and highly skilled at managing their health. The most gruelling work for the group was to educate primary care physicians (PCPs) to be "traffic directors" which meant the PCPs would have to work with specialists; some will refuse to do so and prefer you go it alone. The next step on the medical ladder (for cancer) is the oncologist; this task can be overrun with land mines since most oncologists prefer using the protocols they are comfortable with; a surprising number of them have no idea how to treat most rare cancers. And, under-standably so.
"What if we could teach our method- ology of researching, studying, compiling, evaluating, and selecting a "care path"? The learning curve would be manageable and the process would demonstrate to patients how to judge if information is synergous to their needs. The coaches would be available to provide advocacy and navigation services for those who really need the support.
And so, The Patients' Project had its heartbeat.
Our Board and Advisory Board is comprised of medical professionals, nonprofit con- sultants, and e-patients. Our e-patients/coaches, for the most part, are not medically trained, but have had years of on-the-job training within our healthcare system as patients.
What is a Patient Navigator?
Patient Advocate? Health Coach?
A patient navigator guides patients around the obstacles of our health care system to insure a timely diagnosis and the most beneficial treatment. Using a broad brush stroke, a navigator is an individual responsible for guiding a "vehicle" to its destination. Another type of navigator is those paid by the government to help people find and select an insurance plan in the "Obamacare" insurance marketplace. That's a story for another day.
A patient advocate can help you with insurance issues, make medical decisions (if given a power of attorney), accompany you to appointments, even find legal assistance. Sometimes the advocate is a surrogate for a partner or significant other. An advocate is defined, literally, as a person who publicly supports a particular cause or policy.
There are no national accreditation bodies that certify competency, authority, or credibility, therefore no licensing for these emerging professions, but, they are in the works. Several universities have certificate programs in health advocacy or navigation.
However, we are members of NAHAC (see footer below). Adherence to its Code of Ethics is a condition of membership. We also abide by HIPPA Rules and Regulations which comprise the federal Health Insurance Portability and Accountability Act of 1996. The main goal of the law is to make it easier for people to keep health insurance, protect the confi-dentiality and security of healthcare information and help the healthcare industry control administrative costs.
The health coach is also an emerging "profession". We help individuals "manage" their illnesses, especially chronic conditions. As coaches, we use our personal healthcare experience to motivate and encourage patients to achieve their medical goals. This is the most intimate part of our process.
The emerging fields of health care advocacy and patient navigation has grown at a rapid pace over the last few years so there are a growing number of patient advocates and navigators with their own independent practices.(we're included in that group!) But, we feel that patients should learn at least the basics of being their own advocates, navigators, researchers, and decision-makers; additional support is always available if needed.
Today, most hospitals have at least one on-site patient navigator or advocate; sometimes they maintain an advocate in a large medical specility such as breast cancer. They can be of great help, but the bottom line is that the rules they live by are the hospital's rules, government regulations (such as OSHA), and the institution's legal and liability policies.
An empowered patient owns his disease.*
* According to Urban Dictionary.com, to own is to beat an opponent while displaying a high degree of skill and style.