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  • Writer's pictureRe'Neisha Lee, MPH

We Don't Know What We Don't Know

The impact of under-ascertainment and underreporting on public health surveillance


Long story short...

  • Timely and accurately reporting a public health concern ensures that the health and safety of communities are met and assists in identifying areas and populations that are disproportionately impacted.

  • Without accurate data for trend reports, diseases could potentially impact broader local communities, and even the world - as seen with the COVID-19 pandemic.

  • It has been cited that physicians might not believe that reporting certain diseases is largely necessary and/or they do not have time or resources to document. This could be one important reason why data is not reported from physicians' offices.

  • Underreporting and under-ascertainment will hinder data representation; however, the terms' differences are associated with individual behavior. Additional training, processes, and technological tools are needed to ensure accurate and timely data reporting.

Introduction


The purpose of reporting health-related data is to accurately describe the state of a condition or disease at a specific point in time. Reporting a public health concern ensures that the health and safety of communities are met and assists in identifying areas and populations that are disproportionately impacted (University of Pittsburgh School of Public Health, 2022). A few reasons why illnesses may not be reported include: 1) little to no access to healthcare facilities; 2) unsafe food systems and unreliable testing; 3) poor socioeconomic conditions; and/or 4) providers not being knowledgeable or able to follow proper reporting protocols (Office of Disease Prevention and Health Promotion, 2022). No matter the reason, underreporting puts public health officials at a disadvantage when addressing health problems.

Public health officials cannot understand or address health issues that are not reported. The question that warrants further investigation is, "When and how is important information being made accurately available for public health officials?" Limitations in reporting might happen if healthcare workers are unaware of proper reporting protocols or when an individual becomes ill and does not report feeling sick because of limited finances or access to care. This is particularly common among minoritized groups, as they are more likely to have competing obligations and work longer hours that limit opportunities to obtain care during business hours. Ultimately, underreporting limits the information that the Notifiable Infectious Diseases and Conditions Database receives. This surveillance system is used to monitor trends nationally (Centers for Disease Control and Prevention [CDC], 2021). Without accurate data for trend reports, diseases could potentially impact broader local communities, and even the world - as seen with the COVID-19 pandemic.



 

What is Under-ascertainment?

Healthcare providers can't report what they don't know.


Under-ascertainment is the precursor to underreporting, as data that is not obtained cannot be reported. Under-ascertainment occurs when an individual does not obtain an official diagnosis for a condition. Those who choose not to seek medical care often face certain barriers, including a lack of health insurance (or being underinsured), lack of accessibility to healthcare facilities, and/or limited financial resources (Gibbons, 2014). According to Healthy People 2030, about 1 in 10 people in the United States do not have health insurance or are underinsured. Without access to health insurance or adequate coverage, people are less likely to visit the doctor for preventive care, seek ambulatory services, and are unable to afford life-saving medications due to cost (Office of Disease Prevention and Health Promotion, 2022). These barriers can lead individuals to try to treat a condition with over-the-counter medications; use previously obtained medication to treat an illness; or, most, unfortunately, do nothing. All of these options can have grave implications.

When an individual does not seek medical attention, the incidence or prevalence of the condition is not captured by surveillance systems. This lack of representation in the data can increase the spread of a condition within a community. Under-ascertainment is particularly dangerous because those who are sick are unable to be treated and must deal with complications of their illness. In this case, there is a more significant opportunity for the illness to spread to others. Under-ascertainment is a major issue in low-income communities because most individuals do not have health insurance or have limited financial or physical access to healthcare services. This perpetuates the cycle of poor health among minority communities.

What is Underreporting?

Public health officials can't address what they don't know.


In 1984, Konowitz and colleagues introduced the idea that underreporting is based on providers’ attitudes toward reporting communicable diseases to public health agencies. Healthcare providers have stated several reasons for not reporting illnesses, including: 1) a lack of knowledge of reporting requirements; 2) having a negative attitude toward reporting; and 3) misconceptions about the importance of reporting illnesses (CDC, 2012). Providers might believe reporting certain diseases is unnecessary, which could be a reason why there is not adequate data reported from their offices.

Without knowing what or how to report to official national entities, disease incidence can increase and impact communities differently, depending on the condition and its risk factors. Underreporting creates missed opportunities to improve surveillance, investigate outbreaks, and implement efforts to reduce disease spread. Healthcare leaders cannot accurately target individuals or communities with the highest risk without having evidence of an epidemic or localized issue in the form of data. This can be detrimental in areas with minimal access to healthcare, such as low-income and rural areas – which often consist of historically excluded and marginalized people.


Closing Remarks

We don't know what we don't know.


Under-ascertainment and underreporting will hinder data representation; however, the terms' differences are associated with individual behavior. A person choosing not to seek treatment is under-ascertainment. As a result, healthcare providers are unable to report conditions for which they are not aware. Further, underreporting occurs when an individual seeks treatment, but their diagnosis is either inaccurate or not reported; therefore, public health officials cannot accurately describe the state of a condition. There is limited data from community members about why they sometimes choose not to seek care. Research shows that many environmental and structural factors are barriers for individuals needing healthcare. Qualitative inquiry employing the Health Belief Model would allow for a deeper understanding of why specific populations (especially minority groups) may choose not to seek care.

When health departments work with healthcare providers, laboratories, hospitals, and other partners to get needed information to monitor, control, and prevent reportable diseases and conditions in their communities, if the disease meets the criteria, it becomes a notifiable disease (CDC, 2022). With the CDC monitoring about 120 notifiable diseases and conditions at the national level, reporting diseases has become an important step that helps protect the health of individual communities and the nation (CDC, 2022). Without reporting diseases, we cannot accurately address diseases beyond the individual level, leaving communities - and potentially, the world - at risk.


References:

  1. Centers for Disease Control and Prevention [CDC]. (2022, July 20). What is Case Surveillance? Retrieved from Centers for Disease Control and Prevention.

  2. CDC. (2021, September 24). About Notifiable Infectious Diseases and Conditions Data. Retrieved from National Notifiable Diseases Surveillance System (NNDSS).

  3. CDC. (2012, May 18). Appendix E. Limitations of Notifiable Disease Surveillance and Recommendations for Improvement. Retrieved from CDC Web Archive.

  4. Konowitz, P. M., Petrossian, G. A., & Rose, D. N. (1984). The underreporting of disease and physicians' knowledge of reporting requirements. Public Health Reports, 99(1), 31-35. PMCID: PMC1424528

  5. Office of Disease Prevention and Health Promotion. (2022, February). Access to Health Services. Retrieved from HealthyPeople.gov.

  6. U.S. National Library of Medicine. (June 2021). Reportable diseases. Retrieved from MedlinePlus.

  7. University of Pittsburgh School of Public Health. (2022). What is the definition of Public Health? Retrieved from University of Pittsburgh School of Public Health.



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