SSG Blog

Addressing Gaps in Healthcare: Unveiling Healthcare Data Gaps and Inequity

Posted on July 11th, 2023   |   SSG

The U.S. healthcare system heavily relies on data to enable timely decision-making by public health experts, but these organizations must ensure that the data they collect accurately reflects the people they are designed to serve. The healthcare industry is rapidly expanding its collection of public health data from the local population to help track the spread of disease and emerging trends, including the use and effectiveness of vaccines and other forms of treatment. However, many people are not included in the data for various reasons, including historically underrepresented groups, uninsured individuals, and those with limited access to healthcare services. 

As new disease and health surveillance technologies emerge, public health departments must include as many sources of information as possible while making it easy for participating providers and facilities to share their findings, so these groups don’t go overlooked. Learn how technology can help bridge the data gaps in healthcare by increasing the flow of information.  

What are healthcare data gaps? 

Healthcare data gaps refer to missing or incomplete information that prevents clinicians and policymakers from drawing accurate conclusions about the health status of the local population. In some cases, these gaps can lead to providers and officials overlooking important health issues or trends among certain individuals or groups. If a department lacks access to information about the health or lifestyle of underrepresented groups, they may not be adequately included in the public health reports.

What causes gaps in healthcare? 

Collecting health information about the population for public safety is the responsibility of the local, state, and federal governments. Gaps in healthcare data occur for several reasons, and some groups and individuals may not be included in the aggregate data for various reasons. For example, their information may not reach the department or they may not have shared it with healthcare providers. 

Additionally, various social and environmental factors can affect a person’s ability to access healthcare services. They may not have the money or insurance to pay for care. Mistrust in the healthcare system can lead some individuals to forgo regular checkups and vaccinations. Others may not have time to speak to a doctor based on their proximity to the nearest healthcare provider. Language barriers pose another challenge, as individuals who do not speak English may struggle to communicate with healthcare professionals. Patients with disabilities may be physically unable to leave their homes, preventing them from sharing information about their health with a provider. 

Moreover, factors such as gender, race, ethnicity, religion, or sexual orientation can influence a person’s willingness to disclose personal information or seek medical care due to concerns about discrimination or bias. Someone may omit personal information or avoid speaking to a doctor altogether if they feel they may be discriminated against. 

In addition to the various social and environmental factors, many public health departments struggle to include healthcare data from a wide range of sources because they aren’t using the proper public health software. The entries may be incomplete if the team has to enter information manually. This makes it difficult for the department to scale the data it collects as new sources come online. Some systems may not allow the user to include personal details about the patient that may be of value to the department. For example, the data may show that some groups are more susceptible to diseases based on their lifestyle or how they identify.

How do healthcare data gaps contribute to health inequity? 

Underrepresented groups in the healthcare system often face higher risks of contracting various diseases and conditions, and this is not a coincidence. The primary responsibility of the public health department is to protect the health and safety of the local population by deploying resources and information to prevent the spread of disease. However, if these underrepresented groups are not included in the official health reports, the department’s ability to assist them becomes severely limited. The department can only take action based on the information it collects, which means historically marginalized groups may not receive the benefits and services designed to keep them safe. 

This can lead to a vicious cycle of poor health outcomes as the groups most at risk of contracting disease continue to suffer the worst health outcomes because of their exclusion from data representation. The increased spread of disease and illness within these communities can further restrict their access to healthcare services, impacting their ability to earn a living. 

In other cases, data gaps can lead to providers and officials drawing inaccurate conclusions regarding the spread of disease based on the available data. For instance, it may appear that a disease is spreading faster within a particular neighborhood. However, a more thorough examination may reveal that this is simply due to over-testing because there is a higher concentration of healthcare centers in this area. If the department were to increase the scope of its testing and data collecting efforts, it may find that the spread of disease is linked to other factors, such as accessibility and socioeconomic status. 

What are some examples of data gaps in healthcare? 

There are many examples of data gaps in today’s healthcare system, as demonstrated by the COVID-19 pandemic and its real-life consequences. Public health departments collected large quantities of data on the spread of the disease to mobilize public resources and implement rapidly evolving health guidelines. However, the availability of testing and treatment varied widely among different racial groups. 

According to the U.S. Government Accountability Office (GAO), between March 2020 and June 2021, Hispanic or Latino and non-Hispanic Black people were hospitalized with COVID-19 at a rate 2.8 times higher than non-Hispanic White people, when taking age into account. 

Crucial data was also frequently isolated within individual states and facilities, impeding its dissemination across the healthcare industry. The GAO also found that the Centers for Disease Control and Prevention (CDC) didn’t know the racial identity of almost half of reported COVID-19 cases (47.2%) and vaccinations (46.7%), which limited the agency’s ability to analyze which groups were most likely to get infected or be vaccinated. This information would’ve helped the CDC and other health entities target individuals most at risk. In response, the CDC said it didn’t have the authority to collect race/ethnicity information when reporting on COVID-19 data. 

Access to prenatal care is key to reducing pregnancy-related complications and deaths. According to the CDC, Black, American Indian, and Alaska Native (AI/AN) women are two to three times more likely to die from pregnancy-related causes than White women with the disparity increasing with age. Collecting information about healthcare accessibility can help explain this disparity. UW-Madison Professor Tiffany Green combined patient data with county-level U.S. Census data and found that 89 percent of White women initiate prenatal care during the first trimester compared to only 75 percent of Black mothers and 79 percent of Hispanic mothers. Black women are also nearly twice as likely compared to White women to have a birth with late or no prenatal care compared to White women (9% vs. 5%), according to the Kaiser Family Foundation. Having this information can help public health departments identify issues that lead to health disparities. 

How can we address healthcare data gaps?

Public health departments can address healthcare data gaps by including as many sources of information in their reports as possible to ensure the local population is accurately represented. This may include setting up additional screening and testing centers in the community, using telehealth or traveling healthcare centers to reach underserved populations, and encouraging certain groups to meet with a local provider by creating awareness in spaces where these individuals are most likely to spend their time. The department needs to make it easy for new providers and clinics to create an account on the public health data management portal while validating their credentials for privacy protection. 

Scaling up data collection efforts can be challenging for public health departments, particularly when operating with limited budgets. The software program should automatically format and verify the incoming data before sending it to the database so the team doesn’t have to perform these tasks manually. The software system should be compatible with various forms, inputs, and data file types for seamless integration. The team also needs to quickly customize the user interface to include supplemental information about the person’s identity or lifestyle as it relates to their health. 

Using open-source data management solutions can also help reduce the spread of missing or incomplete information. Members of the public, providers, and other stakeholders can securely log into their accounts to correct any mistakes as they occur. Everyone can own their health information, which instills trust in the local health system. 

Everyone deserves access to healthcare services and information to lead a happy, productive life. Public health officials can use the latest data management trends to improve how they collect and analyze health information about the local population so everyone is included in the final report. Healthcare inequalities will persist unless these agencies take steps to improve the accuracy of their data. Contact SSG to learn more about how our technology can help reduce gaps contributing to these inequalities.