How to Be Your Own Best Health Care Advocate

When someone wakes up with a new ache, pain, or another worrisome symptom, they may head straight to the internet to self-diagnose or determine if it’s serious. This can send you down a rabbit hole of scary, inaccurate, and irrelevant information. But, there’s a better way for you to educate yourself about your health issues, get trustworthy answers, and receive the medical care you need.

“The internet makes patients feel they have some way of finding information quickly without having to wait for a doctor or other provider to call back,” says Jessica MacIntyre, ARNP, NP-C, AOCNP, a nurse practitioner and executive director of clinical operations at Sylvester Comprehensive Cancer Center.

“Much information out there may be based on personal experiences, like blogs and online forums, that can be similar but not exactly relevant to what you’re experiencing in reference to symptoms.”

Product and service advertisements may be presented as medical advice – but they are not.

If you have a primary care physician, they can serve as your first resource to address your questions and refer you to a specialist if needed. As many providers are now offering telemedicine, your doctor or their nurse may be able to answer your questions over the phone or via video chat without an in-office visit. Some health insurance plans also offer telemedicine as a benefit.

In addition, “Many health systems have patient navigators that can guide you to understand the type of medical specialist you need to see,” MacIntyre says. “But it never hurts to call your health system or doctor’s office to ask, ‘Am I supposed to see this type of specialist?'”

If you’re seeking answers online, trust only credible sources.

These include the American Cancer Society, American Heart Association, National Alliance on Mental Illness, National Stroke Association, and other nationally and internationally regarded health organizations that provide peer-reviewed, research-based content to inform the public. These websites may also offer lists of trusted healthcare providers and specialists.

Patient and family advocacy groups can also help answer your questions.

“We collaborate with advocacy groups like the American Cancer Society and the Leukemia and Lymphoma Society that provide a lot of complimentary support to patients seeking answers to their questions,” she says. Advocacy groups can also help you find psychosocial services or address practical needs, like getting to your medical appointments.

Prepare for your next doctor’s visit.

What concerns you? 

Write down your pressing health problems and other concerns and questions. Mention these issues to the intake nurse before you see the doctor. Then, explain them in more detail to the physician.

Set the records straight. 

Before your appointment, send all of your health records, including recent bloodwork, imaging scans, and lab results, to the doctor’s office. You may need to sign medical records release forms. It’s more valuable to have this information available during your visit rather than after. This can also help you avoid having to redo tests unnecessarily.

Need special accommodations? 

If you need any special assistance during your visit, contact the doctor’s office ahead of time to discuss these needs. This is important if you will be arriving in a wheelchair or on crutches or will need an interpreter or translator to communicate with the staff.

Bring a friend. 

Having a trusted family member or friend with you can help you remember what they say when you speak to the doctor. This is especially important if you can’t hear or see well. In some circumstances, this companion can also help serve as your advocate, speaking to your healthcare team on your behalf.

Know your meds. 

Bring a record of your current prescriptions, over-the-counter medications, and vitamin supplements (including dosages and how often you take them). Make a detailed note on paper or your phone, or take photos of your medicine and vitamin bottles. It may be important to note when you take them, such as with food or before bed.

Keep track of your numbers and write them down. 

If you’re diabetic or pre-diabetic, what’s your A1C? Know your typical blood pressure numbers if you have hypertension. Has your weight been fluctuating without reason? If you’re working to lower your cholesterol, what were the results the last time you had them checked?

Ladies, when was your last period? 

Be prepared to provide the nurse with the date of your last menstrual period or when you started menopause. All female patients may be asked if/when they’ve been pregnant.

Know your family history. 

Be aware of your family’s medical history and bring any relevant medical records. Some conditions are genetic. It’s helpful for your health care team to be aware of any relevant diseases, conditions, or cancers for which you may need to be screened.

Be honest with yourself and your health care team.

Don’t be embarrassed. 

Too many patients omit information, downplay the severity of their symptoms, and misrepresent their lifestyle choices when speaking with nurses and doctors because they don’t feel comfortable. Be honest if your healthcare provider asks you about your smoking, drinking, dietary, exercise, or sexual behaviors. Your healthcare team needs to have the complete picture. This will enable them to determine the correct diagnosis, prescribe the proper medications, recommend appropriate lifestyle changes, and establish realistic health goals for you.

Nurses and doctors are your allies. 

If you are being abused or are scared for your safety at home, tell your healthcare providers – it is a safe way to seek help.

Don’t ignore emotional and lifestyle factors. 

You may assume that your mental health and daily life are unrelated to the reason you’re seeing a doctor. But these issues may help health care providers catch a problem in its early stages and lead to more appropriate treatment plans and better outcomes.

• How well have you been sleeping?
• Have you felt more depressed or anxious lately? Are you under more stress these days?
• Have you changed your diet or stopped going to the gym since the pandemic began?
• Are you drinking more?
• Have your urine or bowel movements changed?

Even if your doctor doesn’t ask this list of questions, it’s helpful to offer the information.

Don’t hesitate to ask questions. 

It is most efficient to ask follow-up medical questions to the doctor before they conclude the exam. If you wait to ask the nurse as you leave, the nurse may not know the answer and need to ask the doctor. You must leave your appointment understanding what the doctor is recommending and why. Ask what to expect in terms of side effects and the anticipated outcome. Your doctor may consider medications as the first line of treatment. But it’s helpful to ask if there are non-pharmaceutical approaches you can also do to improve your condition.

Don’t settle.

If you aren’t comfortable asking questions, or if the doctor is disregarding, downplaying, or not listening to your concerns — it’s time to find a new doctor. “Seek another specialist or primary care provider who will answer all of your questions and find one you have trust in,” MacIntyre says. “You have to be comfortable with the decisions that affect your overall health and wellbeing.”

Dana Kantrowitz is a contributor to UMiami Health News.

Tags: health advocacy, Jessica MacIntyre