We are done with “the way things have always been done”. Photo: Joshua Newton via Unsplash

The Gravest Omission in US Healthcare (Part 2)

Introducing Healthcare Experience Literacy through the Pediatric Patient Experience


In general, children are brought to the doctor by their guardian for routine wellness and sick care exams. The adults usually speak amongst themselves, while the pediatric patient is in the periphery.

Exceptional doctors and nurses will engage pediatric patients in conversation, asking them about their wellbeing or symptoms. Guardians predominantly handle all coordination of care logistics: filling out paperwork, managing insurance issues, payments, records requests, and appointment scheduling, and searching for credible information as a resource for learning.

As pediatric patients enter their teenage years, many refrain from engaging in conversations with their physician or asking specific questions with their guardian in the exam room. While some pediatricians ask guardians to see the patient alone for a few minutes, many continue to simply “see” the guardian. Pediatric patients eventually transition to an adult primary care setting. The child that has sat as a bystander of their care is now an adult doing the same without the support of a legal guardian to advocate on their behalf.

For a true transformation of our healthcare system, we must cultivate an environment that supports an informed patient capable of participating in their care and a knowledgeable member of the healthcare system. This must be a life-long learning process, initiated in early childhood following by incremental learning and expansion of knowledge base over time.

Imagine the potential of incrementally introducing healthcare experience literacy to children and young adults from pre-K through grade 12?

Introducing healthcare literacy experience to children and young adults? Yes, please. Photo: Ben White via Unsplash

Parents should encourage their children to participate in their routine wellness exams as well as during sick visits with their pediatricians. Nurses and pediatricians should talk directly to young patients, making eye contact. Caregivers should empathize with young patients and share in their fears and concerns during their appointment. Caregivers should explain what’s being doing each step of the way. Children should be encouraged to ask the doctors and nurses how their day was.

We must normalize the conversations and begin building trust.

Young patients should be encouraged to draw a picture or write down how they are feeling to discuss at their appointments. This renderings or notes may then be added to their chart. This introduces the concept of co-creation of health records, an early precursor to the national initiative OurNotes.

At the end of their appointments, nurses or staff could ask children what they thought of their office visit. You may get the usual, “Those shots hurt” or “I really don’t like strep tests” or it could yield unexpected insights that could be beneficial to other patients in the practice. We will never know if we don’t start asking and valuing the patient experience from the lens of a child.

Have you considered the healthcare experience from a child’s perspective? Photo: Dmitry Ratushny via Unsplash

Refreshing Core Curricula with Healthcare Experience Literacy and Empathy

Modeling positive patient experiences within pediatric offices is not enough. Public school core curricula need to be refreshed to prepare for the healthcare experience.

Take for example, the act of role-play at nursery schools. Instead of just a doctor examining patients, the patient needs to be encouraged to ask questions, to be engaged in their care. Toy doctor kits need to be updated to include a medical records chart, an insurance card, and decision aids to support an engaged doctor-patient discussion. Kindergartners could draw a picture to bring to their doctor on their annual well visit to brighten their doctor’s day. Caregivers need kindness too!

Spelling tests need to include healthcare terminology. Math problems may be crafted to demonstrate the concepts of co-pays, deductibles, and differences between in-network vs. out-of-network out of pocket costs. History lessons should include the beginnings of medicine, the advent of major medical discoveries, the creation of the health insurance, illnesses eradicated by hygiene and population health, the shift from paternalistic medicine to human-centered care, and the advent of the empowered patient.

Children and young adults need to be given the opportunity to tackle healthcare’s shortcomings in age appropriate manners. For example, 4th, 5th, and 6th graders could be presented with healthcare problems and given chances to innovate, presenting their solutions at science fairs. Writing assignments could include opportunities to review doctor office experiences, highlighting positives as well as what could be done to improve them.

Sixth, 7th, and 8th graders must learn how to find credible information online, distinguishing between what is factual vs. deception. Being able to leverage social media responsibly and skillfully for information, support, and insights is critical. Teenagers need to know the difference between self-proclaimed medical experts on YouTube and actual doctors. Introducing stories of teenagers who are patients with chronic illnesses may be a wonderful opportunity to foster empathy and destigmatize illnesses and disabilities.

Discussing celebrity or athlete patient stories can have a tremendous impact. For example, Lady Gaga talks openly about mental health awareness and chronic pain. Selena Gomez had a kidney transplant due to lupus. We need to reach out to children where they are and make healthcare experiences relevant to their daily lives.

High school presents the opportunity to take a deeper dive into more mature topics, such social determinants of health, ableism, digital technologies in healthcare, and death. Professors and instructors should encourage personal stories of students turned patients or carepartners in English writing or journalism courses. Students in photography can capture the emotions, joys, and grief of healthcare. Public speaking on topics of disparities in healthcare can make many voices heard. Openly discussing death and end of life care planning would help normalize the conversation and bring awareness.

Curricula must emphasize the importance of empathy as an integral, rather than soft, skill. Art classes could dedicate some work to be donated to local hospitals for display in various recovery wings, waiting rooms, or halls. Writing assignments could encourage letters to doctors and nurses, thanking them for their care at their last exam or get well soon cards to patients recovering from surgery. Service projects could encourage building relationships with those in long-term care facilities and nursing homes.

Healthcare experience literacy has the potential to augment current US literacy and health literacy goals. The next generation of children is destined to become the shapers of our future America. Immersing them in healthcare experience literacy throughout their childhood and young adult life will lead to a better understanding of how healthcare works (or doesn’t), what areas need improvement and innovation, will enhance health literacy, foster independence, inclusion, and empowerment, and most importantly build human connections and bridge silos.

Literacy + health literacy + healthcare experience literacy = the new triple threat to healthcare’s state of despair.

Roll up those sleeves. We have work to do. Photo: Jeff Sheldon via Unsplash

Part 1: The Gravest Omission in Healthcare

Grace Cordovano, PhD is a private cancer patient advocate and patient experience shaper who blogs at Enlightening Results.

Follow her on Twitter @GraceCordovano

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