Partnering for Timely, Accurate, and Complete Data

Before potential changes are published for public comment, it is helpful to talk to people who are required to submit data about potential barriers, challenges, and concerns. This step gives the health department an opportunity to make modifications that improve the regulation’s chance of success before going through the formal approval process.  

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Data collection is at the heart of health informatics, i.e., acquiring, processing, and studying health data. It is important to ensure that partners are equipped to manage their data submission efforts in a way that supports health informatics. This entails going beyond working with information technology (IT) groups to include staff with public health/population health expertise when setting up or otherwise improving data collection systems. This more comprehensive approach entails educating public health/population health staff about health informatics so that they are prepared to provide IT staff with resources and directions to ensure that data collection proceeds smoothly. This approach also promotes buy-in across the agency, as partners appreciate how their data submission efforts benefit them through the health department’s health informatics work.    

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• Providers may be reluctant to share data about their patients because this is confidential information and they do not want to risk violating patient privacy.  Therefore, it is important to specify in state rules how data are secured, conditions under which patients are contacted, when data are deidentified, and how long data are kept. It is important to take the time to explain this to providers and listen to their concerns to help build trust, correct any misconceptions, and otherwise address barriers that could impede data collection processes. 

1. UT DHHS requires that all results of certain communicable disease tests, whether positive or negative, be submitted. Submission of negative tests can be particularly troublesome for providers; they may understand the need for public health departments to contact people who test positive and not be aware of the value of negative test results. One example of a reason for this practice is that it is possible to determine the time span when someone became infected if the individual previously tested negative and later tests positive, e.g., for cases of Hepatitis C or HIV. This is important because people who are newly infected are clinically managed differently from people who have had an infection for a long time. Another example of the need to report negative tests can be found with Lyme disease, which entails a series of two tests; both tests must be documented as negative before the case can be closed.

• What data can and cannot be collected and shared is complex. It is imperative that health department staff understand the legalities and explain them to partners in a consistent way. Some providers may have concerns about how patients’ data are stored and who has access to them, so understanding safeguards that are in place to protect confidentiality may improve compliance.

1. UT DHHS stores identifiable reportable disease data for 18 months, after which they are deidentified. Data remain identifiable to enable the health department to follow up on cases as needed, identify new cases in people who previously tested negative, and for other clinical and public health purposes. After that time, the deidentified data are kept for surveillance purposes.  

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Hospital systems, commercial laboratories, local health departments, state health department partners, and constituents can benefit from data that have been collected. Ensuring accessibility can also generate support for data collection efforts.  

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This approach facilitates relationships, which may lead partners to reach out with questions before submitting incomplete or inaccurate information. Moreover, it can streamline communications, decreasing frustration and confusion that can result from excessive outreach from different health department staff. Finally, this approach also streamlines the work of health informatics staff by providing them with a high-level view of related issues (e.g., issues that affect different program areas) and facilitating their ability to identify redundancies. 

• UT DHHS has an informatics team that supports communicable disease, environmental epidemiology, and health promotion and prevention at the division level. 

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Routinely ask partners about pain points they experience in submitting data and their suggestions for improvements and communicate with partners when changes are implemented. 

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Tribes are not legally obligated to share their data and may be reluctant to do so because of the deep-rooted mistrust many tribes have for government agencies that stems from historical oppression and government malfeasance. Take the time needed to establish trust and engage tribes in the public health system. Thoroughly discuss surveillance processes, the value of health informatics, and mutually beneficial ways to use shared data to make health improvements.

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