Inequalities in care, issues with access and ineffective provider communication skills have long been systemic issues in the U.S. healthcare system. Additionally, we know the COVID-19 pandemic contributed to deepening healthcare inequalities and further limiting access to care for many, especially individuals from Black and minority ethnic groups, poorer socioeconomic backgrounds in both urban and rural locations and other vulnerable groups of society suffering the full force of its effects.

As a continuing medical education (CME)/continuing professional education (CPE) community, we have attempted to address healthcare inequalities, access and provider communication in a variety of ways including industry-supported CME, as well as educational sessions, posters, abstracts and keynotes at our various meetings and conferences. However, there are few opportunities where we hear from within our own community about personal experience with these issues and the results of that journey. This, then, is my story and how it is impacting the work I do.

You might wonder what does a white male, who has a great job with good insurance, and lives in the top zip code of his city know, or yet, have experience with healthcare inequality and issues with access?

Despite my privilege and resources, I struggled over the last four years to receive a proper diagnosis and treatment for occipital neuralgia as evidenced by seeing a collective eight different healthcare providers and receiving five different unsuccessful treatments. Occipital neuralgia is a condition in which the occipital nerves — the nerves that run through the scalp — are injured and inflamed. This causes headaches that feel like severe piercing, throbbing or shock-like pain in the upper neck, back of the head or behind the ears. Similar to other healthcare conditions, some days are good, and others are deeply challenging.

One such challenging day found me at my local urgent care center where I encountered a healthcare professional who would not even see me and made me stay in the waiting room while telling me, “We don’t believe in that here.” I had only sought care that day after sitting in the dark curled up on the couch writhing in intense pain all weekend. Looking back, I truly think she, and many of the initial clinicians I sought care from, just had not encountered occipital neuralgia before and were not aware that it can closely mirror certain types of migraines. However, hearing her remark solidified the fear I had even after being brave enough to seek care, because I felt like I had tried everything I could and now I was being met with no compassion or care when I needed it most. She even mentioned that the ER wouldn’t do anything for me either. She spoke to me for a few more minutes from the nurses’ window, and eventually after seeing how desperate I was provided treatment that day. Unfortunately, it was not effective in resolving my symptoms. Afterward, I went home and cried. The urgent care center conversations during that visit had drained me.

At the time, I was employed in a contract position and was paying out of pocket for health insurance with a limited select HMO. Two months after the visit at the urgent care center, I self-referred myself to a specialist in Boston with their headache and pain clinic. I was optimistic about finding a better outcome, despite the higher cost. It was exciting to learn that New England (I live on the border of Massachusetts and New Hampshire) includes states among the top five with the highest overall health system scores. Fortunately, not only was my first visit a compassionate one, but the continuing care I have received there has been excellent and exactly what I was looking for … care, compassion and a true partner in my diagnostic journey.

The communication skills of healthcare providers played a crucial role in my journey. While some providers were empathetic and supportive, others were dismissive and unhelpful. The encounter at the urgent care center, where I was essentially turned away without receiving optimal care, was particularly disheartening. It highlighted how gaps in competency and skill in patient-centric care and communication within the healthcare system can directly impact patient outcomes and experiences. Yet, it is difficult to fault any one healthcare professional, as these clinicians need a 27-hour workday just to keep up with guideline-recommended care, let alone hone the skills and competencies for patient-centered care.

This year-long experience, and the conversation with that clinician, forced me to face issues I had only read and heard about and supported in independent medical education grants. It forced me to move from talking about change to a drive for action in facilitating change. I regularly remind myself that if I can go through this, how much worse is it for others in much more challenging circumstances

Being part of the CME/CPE community has made me more aware than ever of the need to tackle these systemic issues directly in our educational projects. It’s not that I didn’t believe in this previously or had not tried doing so before. Rather, my experience has caused me to reevaluate, as an industry supporter, how I might address these issues, incorporate them into CME strategy, and advocate for budget in my organization to support these initiatives. In fact, addressing healthcare inequalities, access, communication and even social determinants of health has become my passionate life mission. It's not enough to simply support clinical knowledge and skills-based training. We must also educate healthcare professionals on cultural competence, empathy and the importance of equitable care delivery. By fostering a more inclusive and patient-centered approach to healthcare, we can work toward reducing disparities and ensuring that all individuals receive the quality care they deserve, regardless of their background or circumstances. This is my story, my life’s mission, but I can’t do it alone. Why not join me?

Resources

Health Inequalities During COVID-19 and Their Effects on Morbidity and Mortality - PMC (nih.gov)