Can I collect health information from participants in California? What are the requirements?

To collect health information from participants in California, you must adhere to the California Health Information Exchange Practices Principles ^[1.4]. The principles include the following requirements:

• Prior to requesting consent from an individual or the individual’s legally authorized personal representative to permit the electronic exchange of health information among separate, unaffiliated entities, Demonstration Project Participant shall provide notice to the individual or the individual’s legally authorized personal representative ^[1.2].
• Before an individual’s individual health information is electronically disclosed through a HIO or independent directed exchange, Demonstration Project Participant shall obtain written affirmative consent documenting the individual’s or the individual’s legally authorized personal representative’s choice to electronically disclose the individual’s individual health information or verify the individual’s consent in a centralized consent registry ^[1.2].
• Health information shall be relevant, accurate, complete, and kept up-to-date ^[1.4].
• There shall be limits to the collection of individual health information. Individual health information shall be obtained by lawful and fair means. Where appropriate, it shall be obtained with the knowledge or consent of the individual or their personal representative. The specific purposes for which individual health information is collected shall be specified not later than at the time of collection ^[1.4].

Please note that these requirements are specific to the California Health Information Exchange Practices Principles and may not apply to all situations involving the collection of health information. ^{[2.1][3.1][2.2][1.3][3.3]}

Source(s):

• [2.1] Section 130279 - HEALTH INFORMATION EXCHANGE PRIVACY AND SECURITY DEMONSTRATION PROJECTS
• [1.2] Informing Requirements; Affirmative Consent; Revocation of Consent.
• [3.1] Participant Selection Information.
• [2.2] Section 130275 - HEALTH INFORMATION EXCHANGE PRIVACY AND SECURITY DEMONSTRATION PROJECTS
• [1.3] Applicability of Regulations.
• [3.3] Sponsor Information.
• [1.4] California Health Information Exchange Practices Principles.

Jurisdiction

California

• Privacy