Data Collection and Surveillance

Definition

Systematic gathering, monitoring, and analysis of information

Data Sources

Individual persons, environment, healthcare providers and facilities, non-health related data (e.g., taxes, sales, administrative data)

Primary Concerns

Civil liberties, privacy risks, unchecked government power, surveillance-induced conformity, potential for blackmail, coercion, or discrimination

Impact on Behavior

Can lead to surveillance-induced conformity, where individuals alter actions due to being observed

Enabling Technologies

Artificial Intelligence (AI), Large Language Models (LLMs), data analytics platforms (e.g., Palantir Foundry), smartphones, electronic reportable disease surveillance systems

Stated Purposes (Proponents)

Effective governance, national security, border security, defense intelligence, tax investigations, public health surveillance, improving business insights

Surveillance Types (Public Health)

Passive surveillance (provider-initiated reports), Active surveillance (health department-initiated solicitations)

Principles for Data Collection (Public Health)

Clearly defined objectives, measurement standards, clear case definitions, standardization, participant safety, privacy and security of collected data, informed consent, understanding of data usage

Contemporary

Contemporary

Contemporary

This chart shows the financial obligations from the U.S. government to Palantir Technologies Inc. (in million U.S. dollars).

Palantir’s AI is powering IRS tracking and global surveillance. As Karp defends it, critics warn of privacy risks and unchecked government power.

Government agencies are contracting with Palantir to correlate disparate pieces of data, promising efficiency but raising civil liberties concerns.

Web page about Data Collection and Surveillance sourced during research.

Bombshell reporting just revealed a massive database contract between ICE and Palantir, to the tune of tens of millions of dollars.

Data collection is instrumental to any surveillance system and it is important that efforts to collect data follow several key principles. First and foremost there must be clearly defined objectives for the surveillance which will in large part direct the choice of data elements. Measurement standards are critical and case definitions must be clear and, for some systems, diagnostic data may be required to validate events. Standardization of the data collection is essential for comparing [...] in data collection and assuring the safety of participants and the privacy and security of the collected patient data. Finally, it is critical that participants in any surveillance understand what is being asked of them and how their individual data will be used. In addition, it is important that patients understand that surveillance is an ongoing process and its full impact often requires a substantial period of time to be fully realized. [...] The analyses of surveillance data most often include cross-sectional descriptions of the population, outcomes and risk factors which can be further analyzed for trends over time. These kinds of analyses are useful for estimating the burden of the disease in the population, determining whether this burden is increasing or decreasing in the population as well as making assessments about whether certain segments of the population are more at risk for the disorder or its complications (so-called

Today, tools for collecting and sharing data have become a new, nearly imperceptible form of surveillance. Our smartphones, for example, produce and hold huge amounts of personal data — including who we talk to, where we go, our internet browsing history, our social networks, and more. This data can be collected and analyzed to provide insights into consumer behavior or employee activities. But it can also intrude on people’s rights to privacy and could put your enterprise at risk of legal and [...] Collecting consumer data can also help you improve nearly every aspect of your business, providing deep insights into your customers’ behavior, the demographics you appeal to, and what exactly they want from your company and its products. ### What are the trade offs? There is a dark side to surveillance technology. It’s everywhere — and as the technology becomes more easily available, it’s difficult to prevent your data from being collected, or your face being saved in an unknown database. [...]  This raises a lot of privacy concerns, threaten civil liberties and increases the risk of blackmail, coercion, or discrimination. There’s no way for individuals to know what data is being collected, where it’s stored, or how it’s being used. And at the moment, there’s little legislation to protect individuals, because the technology is advancing too fast for regulators to keep up.

The rise of surveillance technologies is not just about data collection—it’s about how this data influences human behaviour. Surveillance-induced conformity is a growing phenomenon where people change their actions because they know they are being observed. Whether it’s altering what you post on social media or changing your behaviour when in a public place, surveillance has made us more aware of how our actions are being watched.

This form of data collection, in which health-care providers send reports to a health department on the basis of a known set of rules and regulations, is called passive surveillance (provider-initiated). Less commonly, health department staff may contact healthcare providers to solicit reports. This active surveillance (health department-initiated) is usually limited to specific diseases over a limited period of time, such as after a community exposure or during an outbreak. [...] Data collected for health-related purposes typically come from three sources, individual persons, the environment, and health-care providers and facilities. Moreover, data collected for nonhealth–related purposes (e.g., taxes, sales, or administrative data) might also be used for surveillance of health-related problems. Because a researcher might wish to calculate rates of disease, information about the size of the population under surveillance and its geographic distribution are also helpful. [...] surveillance is an activity — the continued watchfulness over a disease by using data collected about it — and not the data about a disease or the different data systems used to collect or manage such data.