ARETGroup

One of the most persistent challenges facing data managers, data information officers, data stewards, and data risk or compliance officers is determining the right evidence-driven systems and strategies for collecting, managing, sharing and publishing sensitive subject information. And, doing so in a way that meets agency privacy and regulatory requirements is a chief priority. When tackling these issues, a privacy-first approach offers solutions with clear benefits for consumers and institutions.

What is Privacy-First Data Management?

The goal of a privacy-first approach is protection of subject confidentiality from unauthorized access and use. Privacy-First data systems seek to minimize exposure to common personally identifiable information (PII) measures, such as names and addresses, used in data collection, management, sharing and publication. Rather, privacy-first seeks to maximize the integrity and availability of de-identified information, through processes like data minimization and safe harboring.

From the moment any data with direct identifiers—such as PII or Protected Health Information (PHI) — are systematically collected in an electronic database, that data are likely governed by complex regulatory or policy schema. Key federal frameworks and resources for privacy-first management apply include the National Institute of Standards and Technology (NIST), which develops cybersecurity and technology standards; the Code of Federal Regulations (CFR), specifically Title 45, Part 46 (45 CFR 46), that establishes federal requirements for the protection of human research participants; the Family Educational Rights and Privacy Act (FERPA), which protects the privacy of student education records; the Criminal Justice Information Services (CJIS) Security Policy that establishes requirements for safeguarding criminal justice information; and various Institutional Review Boards (IRB), responsible for reviewing research involving human participants to ensure compliance with ethical and regulatory standards.

These standards were made to protect citizens when exchanging private information with organizations, care providers, schools, researchers, and government agencies. Generally, they were intended to clarify who can access and use information. That’s why most real-world data capture systems today are built with rigorous adherence to compliance and privacy in mind. Consumers can expect restrictions on how information can be viewed, accessed, integrated, exported, or analyzed. While essential safeguards should be preserved to the greatest extent possible, enabling responsible data use calls for constant innovation.

There are many cases in which data are being systematically collected and exchanged to reach new populations, collaborate across systems, or begin new programmatic initiatives.  Thinking privacy-first for these purposes and more can help built trust, reduce data risk, promote better cross-systems collaboration and aid in meeting compliance standards at reduced cost.

ARETGroup Horizon: AI-Powered, Privacy-First Data Lifecycle Software

Privacy-first data management has become an increasingly important priority among industry leaders across marketing, web browsing and search, email services, and artificial intelligence. Due to its strict adherence to multiple and overlapping compliance standards, as well as a growing public awareness, many industries are employing the term as a positioning strategy. However, the concept has not been well understood or consistently applied where needed. For example, there are fewer leading solutions in healthcare, justice, behavioral health, and human service industries.

For more information and a review of core system capabilities needed to institute a privacy-first approach, contact ARETGroup Horizon. ARETGroup’s software supports compliance with applicable regulatory and governance requirements and help strengthen your agency’s data management practices.