It started with a routine mammogram.
For years, I’ve stayed diligent about my health, knowing early detection is key. But when the radiologist found two suspicious masses in my right breast, I was propelled into a whirlwind of uncertainty, fear, and waiting.
The recommendation for a biopsy came quickly. I tried to be brave as I lay on the exam table, my arm raised above my head, while the radiologist and team meticulously worked to sample the areas of concern. They explained everything…every step, every risk…so thoroughly, yet my mind kept wandering to the "what-ifs." What if it’s cancer? What if this changes everything?
But nothing prepared me for the days that followed. I knew they’d send the tissue samples to pathology, and I understood that analyzing breast tissue can take time. Still, I found myself counting every hour, every minute, waiting for the phone call or the portal notification that would tell me what my future held.
During those five days, I experienced the most profound mix of emotions. The tightness in my chest made it hard to breathe. My heart pounded relentlessly, a drumbeat of anxiety that wouldn’t stop. Sleep was fleeting, as my mind replayed every worst-case scenario. I was teetering on the edge of tears constantly, feeling both fragile and frustrated. The wait was torture…a limbo between fear and hope, and no amount of reassurance that "this is standard timing for breast pathology" could make it better.
To make matters more challenging, two of the reports I received along the way contained incorrect or missing data. As a health information (HI) professional, I know how critical accurate data is for ensuring proper follow-ups and care plans. If I hadn’t reviewed the reports closely and asked questions, something important could have been overlooked. It was a stark reminder of how important health literacy is not just for healthcare professionals, but for patients, too. AHIMA resources, such as the Health Literacy for Health Equity™ Insights Blog and research on health literacy interventions, highlight the urgent need to improve how patients engage with and understand their health information.
Prioritizing Health Literacy
Patients must be empowered to review their data, ask questions, and advocate for themselves. This starts with health literacy, something we must prioritize as HI professionals. Data is the foundation of care but understanding that data is just as crucial. One of the most valuable tools available to patients is the patient portal, which provides direct access to test results, visit summaries, and provider communications. Encouraging patients to actively engage with their portal helps them stay informed, catch potential errors, and feel more in control of their health journey.
When my results finally came, they were benign. The wave of relief was overwhelming, but it was accompanied by another realization: this experience, even with the best possible outcome, was excruciatingly difficult.
As an HI professional, I have spent my 30-year career ensuring that accurate and timely information drives better outcomes. Yet, being a patient made me realize just how hard the waiting can be. Even when healthcare teams do their best, and mine certainly did, there’s still so much room for improvement.
We need to find ways to reduce the emotional burden for patients in moments like this. The fear and uncertainty that come with waiting for critical health information can be overwhelming, and while medical processes take time, there are opportunities to make that wait more manageable. Better communication means keeping patients informed at every step, whether that’s providing realistic expectations for test result timelines, offering status updates along the way, or ensuring that healthcare professionals are available to answer questions. Clearer timelines help alleviate unnecessary anxiety by setting accurate expectations upfront, reducing the guessing game that often leaves patients feeling powerless.
Additionally, a commitment to data accuracy and accessibility makes a world of difference for people navigating the unknown. When data is incomplete, incorrect, or difficult to interpret, it creates additional stress for patients who are already overwhelmed. Ensuring that medical records, imaging reports, and pathology results are accurate and easy to access empowers patients to take an active role in their care.
HI professionals play a crucial role in this process by bridging the gap between clinical data and patient understanding. By improving the way information is communicated and delivered, we can make healthcare not only more efficient but also more compassionate and patient centered. The AHIMA Health Data Literacy Microcredential equips professionals with the skills needed to ensure that patients and providers alike can interpret and use health data effectively.
Managing and Delivering Health Data
I’m sharing this not for sympathy but to start a conversation. How can we, as healthcare professionals, ensure that the care experience is as meaningful as the outcome? Beyond clinical treatments and test results, the way information is shared, interpreted, and understood plays a crucial role in a patient’s journey. Patients rely on accurate and timely information to make decisions about their health, yet too often, they are left feeling uncertain, confused, or anxious due to delays, unclear communication, or difficulty accessing their records. Health information professionals are uniquely positioned to enhance the way data is managed and delivered, ensuring that patients receive the right information at the right time in a way that is easy to understand.
If there’s one thing this experience has taught me, it’s that even when healthcare is good, there is always room to make it more compassionate, more patient-centered, and more supportive. For the countless people who will one day find themselves in this same place…waiting, hoping, and searching for answers…we have an opportunity to ease that burden. Because healthcare isn’t just about outcomes; it’s about the experience, the humanity, and the reassurance we can provide along the way.
Every patient deserves to be more than just a name on a chart. They deserve to be seen, heard, and guided with compassion through every step of their journey.
Jennifer Mueller, MBA, RHIA, SHIMSS, FACHE, FAHIMA, FACHDM, is Senior Vice President of Health Information Career Advancement at AHIMA.
By Jennifer Mueller, MBA, RHIA, SHIMSS, FACHE, FAHIMA, FACHDM