At the NICA Conference, a very important subject was brought up and discussed: Advocacy and how to involve your patients in advocacy and advocating for themselves. Patients who have a chronic illness are often hit with many things at the time of the diagnosis. Along with the difficulty of dealing with the diagnosis, patients also have to make decisions on treatments. More often than not, insurance companies dictate what treatment should be first administered, regardless of the level of disease activity, their overall state and their provider’s recommendation based on their physical assessment and diagnostic work up.
This session highlighted the importance of ensuring patients receive the necessary services and treatments rather than what is on an insurance companies check-off list. As an advocate for our patients it is important that we as healthcare professionals stay up to date on guidelines and coverage of medications.
How do we incorporate self-advocacy in patient care?
We can teach patients that self-advocacy is a state of mind. In a sense that, if the patient is able, really learning about their diagnosis, symptoms, and treatment options can have a huge impact on them speaking up when necessary or when they feel something isn’t right. Having them realize that they are ultimately in control can be a key factor in achieving optimal outcomes for them.
Getting patients more involved in legislative advocacy can be a game changer not only for themselves but for other patients as well. Their story can be life changing for someone who is never diagnosed and might not know where to turn to. Also verbalizing their struggles and barriers to local legislations can set potential changes in motion.
We can be the one to be responsible for our patients really knowing about their diagnosis or be the one to let them live with the label and just go through the motions. It is all about how it is represented. If a patient is truly self-aware of what is occuring in their body and how to manage it, then they will be able to speak to their diagnosis with confidence. I have always been a firm believer that patients know their body best, but how much better could they truly understand what is going on if they were taught self-advocacy?
There are several tangible ways we can begin to better involve our patients in advocating for their care. We must help patients better manage their diagnosis by providing them with the appropriate resources and tools. Tools that encourage self-advocacy and awareness also equip patients to better inform their healthcare providers, leading to better outcomes. Connecting patients with other patients and similar scenarios provides new ways for them to manage their diagnosis and offers relationships that help them feel better understood. Lastly, in connecting patients with the proper legislation and disease-specific organizations, it enables them to truly adopt a self-advocating state of mind. All of these means lead to better means of disease management and better patient and healthcare relations. Ultimately in making our patients aware of their access to care, it further empowers them to take ownership of their diagnosis and their health.
AUTHOR PROFILE: Joni Fontenot, RN, is an RN Staff Nurse at Ochsner Health System – The Grove – Infusion/ Rheumatology Infusion in Baton Rouge, LA, and Chapter Development Chair on the Rheumatology Nurses Society Board of Directors.