Voices Across America

My Patient Story

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Carly

State: Virginia
Congressional District: VA11

Diseases

Cancer

Issues and Challenges

Carly has encountered: Medical Discrimination

My Story

I never understood the privilege I had of understanding my doctor until I didn’t understand them. Suddenly they were using language that was foreign to me, a completely different dialect colloquial in tone. I was embarrassed, unsure how to reset talking to my doctor. My access to quality care diminished because of words spoken to me as if I were a colleague.

ACCESS TO CARE
When we think of healthcare access, we think of access to an a complex system. It includes access to insurance, a doctor or team who accept that insurance, and affordable medications that actually work. But if we think of the human side of healthcare, what does access mean then? A good relationship with that doctor or doctors, compassionate care, and a feeling of being heard and understood. What about language? What about simply talking to your doctor?

HEALTH LITERACY
According to the Department of Health and Human Services, health literacy can be defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions.” So, if we don’t have the ability to “obtain, process, and understand” the information given to us, then we can’t make informed health decisions. Ultimately, this affects our outcomes as patients. Unfortunately, when our doctors see that we’re not improving, they’re unlikely to ask if we understood their advice. Did we understand how to take our medications properly? Did we grasp the timeline of testing? If we didn’t, we are labeled as “non-compliant.”

So how do both parties in this two-way relationship overcome this communication barrier? Here are some tips for both patients and doctors:

PATIENT STRATEGIES
Patients:
- Write down a list of questions before you go to each appointment so that nothing is forgotten
- Ask for clarification if something doesn’t make sense
- Patients learn in different ways – is there a different way the information can be explained? (i.e. drawings, pictures, etc.)
- Have a caregiver with you – two sets of eyes and ears are better than one
- If the doctor doesn’t speak your native language, bring a trusted friend or family member that can help interpret. Alternatively, ask the front desk staff if an interpreter can be provided (interpreter services are more available than ever)
- Ask how to interpret your lab results – what do they mean, what is considered the normal range, what should you be concerned about, etc.
- Ask if there are different treatment options that fall in line with what you value as a patient
- Ask if these treatments are covered by your insurance
- Ask if coupons are available to help offset costs for medications that are more expensive

PROVIDER STRATEGIES
Providers:
- Use the teach-back method: have patients repeat what you explained to them in their own words
- Learn about the patient as an individual and consider their wants and needs in addition to best practices when determining the next steps in care
- Take the time to listen!
- Explain the medications that you are prescribing – what they’re for and how the patient is expected to take them
- Help interpret information that the patient brings into their appointment
- Speak clearly in a language that the patient will understand – not medical jargon
- Watch patient’s facial expressions to see if they demonstrate understanding or confusion
- If referring to an outside specialist, provide the names and numbers of the providers

UNDERSTANDING AND ACCESS
Using these strategies strengthens the bond between doctor and patient. Furthermore it encourages self-advocacy, which is so desperately needed. Talking to our doctor and understanding what they need us to understand leads to better outcomes.

Having clear access to and understanding of the knowledge that can make us feel, do, and live better shouldn’t be a privilege. It’s a necessity.

My Motivation and Inspiration

Helping other rare and chronic patients like me become advocates of their own health!

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