Topic: Patient education beyond treatment information -- how to navigate the system and get support

When we think about health care, perhaps the scariest thing is receiving a cancer diagnosis. According to the National Cancer Institute (NCI), cancers can be diagnosed in a number of ways, including lab tests and imaging scans, and therefore can be found during a routine physical or other preventive health care service – not something one would expect during a regular check-up.

Additionally, Johns Hopkins notes that 40% of cancers are caused by environmental factors, such as smoking, consuming an unhealthy diet, and a sedentary lifestyle. So, that means the remaining 60% of cancers are caused by mutations in the DNA, which most of us are often unaware of. Scary, right?

Receiving a cancer diagnosis can make us wonder what caused it, what could we have done differently, but most importantly, what do we do now to fight this disease?

There are quite a few options for treatment of cancer depending on a variety of factors that patients should ask of their doctor about, including:

• The type and stage of cancer they have
• Whether it has spread to other places in the body, including in or near vital organs
• What the cure rate is and the prognosis
• What the different treatment options are, which may include chemotherapy, radiation, a combination of the two, immunotherapy, and/or surgery
• How many treatments are needed, how often they’ll be given, and any side effects

However, looking beyond treatment, patients often have concerns about:

• Insurance and financial resources
• How to care for themselves physically and mentally
• Receiving support from family and friends
• How to be speak up when working with their care team and not be intimidated
• Looking for second and third opinions, especially to enhance their quality of life
• Job security during treatment and recovery
• And much more...

There are many different aspects of cancer care that patients, and even physicians, don’t recognize because the healthcare system is focused largely on treatment. Therefore, navigating the health care system becomes an additional burden. Yet patients can be advocates for themselves in a number of ways…

While it’s so vital, one of the most complex healthcare topics to understand is insurance, especially when you have a condition as chronic as cancer. According to NCI, cancer patients are being treated with drugs that cost upward of $10,000 per month – each. And the financial burden doesn’t end when a patient finishes treatment. Cancer survivors report higher out-of-pocket costs as well. For example, a survey of cancer survivors between 18-64 years old paid $1,107 annually out-of-pocket compared to patients without a cancer diagnosis who only paid $617 annually.

Yet having insurance can help tremendously, and when financial toxicity lowers, stress levels lower (keep in mind that stress can help cancer grow and spread). To navigate health insurance, it’s important that patients:

• Pay bills on time and in full.
• Keep records of medical bills, explanation of benefits (EOBs), claims, and payment records.
• Call their insurance company or go on their website to check if certain drugs, procedures, and even hospitals are in their network. Also, make sure any drugs don’t require prior authorization, which can lengthen the time a patient is without potentially life-saving medication.
• Call their insurance if something doesn’t make sense, especially for EOBs. Medical jargon such as “co-insurance, premium, co-pay, out-of-pocket”, etc. can be confusing and some charges may not make sense. An insurance representative should be able to help break down everything in plain language. Additionally, healthcare.gov has glossary of terms that patients can use to help them understand their bill and insurance in general.
• Talk with their employer if Family and Medical Leave needs to be taken.

Another important aspect of navigating the healthcare system is communicating effectively with your care team. Patients should become comfortable with asking questions of any of their healthcare team members. As mentioned above, the medical world is full of jargon that physicians and other medical staff tend to use without explanation. Therefore, it’s imperative that patients prepare before visits and speak up during each visit. For example, patients can write down a list of questions they want to ask or any concerns they may have before their appointment. Some doctor’s offices offer an “after-visit” summary, which breaks down what happened in the appointment. However, it may not contain everything. Additionally, 40-80% of medical information explain by the doctor is immediately forgotten, especially if there was a lot of information presented. Not only can this make patients feel uncomfortable, but it can lower adherence and create poorer health outcomes. As a remedy, patients can bring a notebook with them that’s specifically dedicated to their care and take notes during the appointment.

Also, patients often feel comforted when they have a family member or friend attend the appointment with them. Having a second pair of ears and eyes to make sure everything is communicated clearly can provide a huge benefit both to the caregiver and patient.

Most importantly, patients should remember that their diagnosis doesn’t mean that they’re alone on this journey. In fact, the American Cancer Society expects more than 1.7 million patients to be diagnosed with cancer in 2019. Support groups, which can be found both online and in-person, can help patients interact with one another, share their struggles and triumphs, and ask questions in a judgement-free zone. There are some online platforms that are dedicated to all different types of cancer, including Cancer Care, Stupid Cancer, and Inspire, and in-person support groups for specific types of cancer, including ones that can found through local hospitals. While it may be scary at first to share personal details, becoming a part of a community allows patients to learn from one another and provides a safe place where thoughts and feelings can be shared. There’s nothing like knowing that you aren’t alone.

The health care system is an ever-changing complex environment for even the most seasoned physicians, much less patients, and especially those with chronic disease. Navigating the vast amount of information online can be very overwhelming and challenging. Knowing how to advocate for oneself and taking the steps to become a more informed patient are the building blocks of a strong foundation that can help cancer patients re-discover their strength and know that a disease does not define them.

Empowering patients through education is our passion, and our MyCareCompass digital patient engagement system is helping cancer centers achieve this. In addition to treatment information, it serves patients resources about the psycho-social aspects of cancer care and is timed to their individual cancer journey. If you’re interested in learning more, please visit www.trymycarecompass.com and reach out to us at info@arches.health