Ethics Principles for Access to and Use of Veteran Data

Veterans trust VA to promote and respect their privacy, confidentiality, and autonomy in the services we provide or support. We earn this trust when we adhere to VA’s core values of integrity, commitment, advocacy, respect and excellence (commonly referred to as I-CARE).

Consistent with these values, VA must promote and ensure responsible practices whenever Veteran data is accessed or used. Veteran data is accessed and used for many purposes which are developing at an unparalleled pace. While the regulatory and policy framework that governs data access and use sets important standards about what is required with respect to data access and use, it does not always provide definitive guidance about how VA should manage access or use of Veteran data when regulation and policy permit organizational discretion.

The following principles establish an overarching ethical framework for all individuals, groups, or entities inside and outside VA to apply when managing data access to or use of Veteran data. All parties who oversee access to and use of Veteran data or have access to and use Veteran data must carefully consider and apply this principle-based ethical framework in the context of the specific clinical, technical, fiscal, regulatory, professional, industry and other standards specifically applicable to each data access or use. Consistent application of this framework will ensure the integrity and trustworthiness that Veterans and other stakeholders expect and deserve when Veteran data is accessed or used.

Principle 1: The primary goal for use of Veteran data is for the good of Veterans.

Veteran data is personal and sensitive. Use of Veteran data must have the primary goal of supporting and improving overall Veteran health and wellness, and the delivery of benefits and services to Veterans at large.

Principle 2: Veteran data should be used in a manner that ensures equity to Veterans.

The proper use of Veteran data must help to ensure equity so that no Veteran population is disproportionally excluded from the benefits of, or burdened by the risks of, data use because of race, color, religion, national origin, Limited English Proficiency (LEP), age, sex (including gender identity and transgender status), sexual orientation, pregnancy, marital and parental status, disability or genetic information.

Principle 3: The sharing of Veteran data should be based on the Veteran’s meaningful choice.

When regulation and policy permit organizational discretion, the sharing of Veteran data by VA or non-VA parties (e.g., for purposes other than treatment, payment, health care operations, or meeting legal requirements), should be based on the Veteran’s meaningful choice to permit sharing their information for that specific purpose. Timely, clear, relevant, concise, complete and comprehensible information must be provided to the Veteran to serve as a basis for their free and informed choice. A Veteran’s preference to change their mind about sharing or not sharing their information should be facilitated, with the understanding that information that has already been shared may be unable to be retrieved or retracted. A Veteran’s choice(s) about data sharing must not be the basis to deny care or benefits to which they are otherwise entitled.

Principle 4: Access to and exchange of Veteran data should be transparent and consistent.

Access to and the exchange of Veteran data should be transparent and consistent, and in accordance with all applicable standards. For the Veterans Health Administration (VHA), this includes practices described in VHA’s Notice of Privacy Practices. Data should only be sent or accessed for approved and specified purposes; there should be no unspecified use, or re-use of Veteran data without approval. The release of Veteran data for purposes other than those which were originally approved or specified requires a separate approval and commitment of all parties to follow these principles. Failure to ensure such protections is a breach of Veteran trust and confidentiality.

Principle 5: De-identified Veteran data should not be reidentified without authorization.

Parties who receive de-identified Veteran data must not attempt to re-identify the data in any manner without prior authorization. VA considers unauthorized re-identification a breach of Veteran trust and confidentiality.

Principle 6: There is an obligation of reciprocity for gains made using Veteran data.

A financial or other gain from innovation that uses Veteran data creates a moral and tangible obligation of reciprocity to share this gain with Veterans, Veteran organizations, and causes. For example, parties could fulfill this obligation by giving back to the Veteran community through support of Veteran causes or organizations, by facilitating Veteran access to innovations to which Veteran data contributed, or, at a minimum, by publicly recognizing Veteran contributions to the gain or innovation. Veteran data must not be sold.

Principle 7: All parties are obligated to ensure data security, quality and integrity of Veteran data.

All parties who send, receive, or use Veteran data must ensure data security, quality and integrity. In other words, that the data remain secure; accurate; complete; and representative of the data quality, meaning, and integrity when it was received or accessed from VA. Access to data should be limited to the minimum amount needed to accomplish the stated purpose, and should be terminated when no longer required. Data that are not necessary to accomplish the purpose for which it was obtained should not be retained longer than legally required. Transparency about breaches in data security, quality or integrity is also essential to promote trust and minimize impacts to Veterans.

Principle 8: Veterans should be able to access to their own information.

Veterans must have user-friendly access to their own information.

Principle 9: Veterans have the right to request amendments to their own information.

Veterans must be able to exercise their right to request amendments to their information if they feel it is untimely, inaccurate, incomplete or not relevant.

Note: De-identified information is information that does not provide any details that could be reasonably used to identify an individual.