Consultation questions

The proposed new health information management policy framework is an initiative with a province-wide scope. It would establish rules that pertain to the individuals and organizations that are subject to B.C. laws in the health care system, such as health authorities and regulated health professionals.

Consultation is needed to explore how a new B.C. law could support Indigenous rights and objectives, including how the mainstream health system interfaces with self-determining First Nations and Indigenous health systems in B.C. 

We welcome any feedback on the policy ideas below which have been informed throughout the consultation process so far. We also welcome any feedback on the overall policy framework beyond these policy ideas.

Information on how to provide feedback is available on our Written submissions page. 

Policy Idea 1: 

Establish a framework for First Nations, Métis, and Inuit to opt-in by self-determining which individual(s) or organization(s) may represent them as a data custodian within a new B.C. law.  

Recognizing First Nations, Métis, or Inuit custodians in a B.C. law may: 

• Establish clarity for the broader health sector to facilitate information sharing with First Nations, Métis, Inuit for health purposes such as patient care, as well as enable clearer pathways for data access to inform community-driven and Nation-based health policies and programs   
• Ensure that personal health information is being shared within a framework of privacy, so that information is only being shared with the appropriate contact/people at the First Nation, Métis, or Inuit organization, as determined by First Nations, Métis, or Inuit.  

Proposed alignment with UNDRIP:  

• Self-determination and self-government (Articles 3, 19 and 20 (1)) 
• Consultation on matters affecting Indigenous rights (Article 18)   
• Right to health without discrimination (Articles 21-24)    

Policy Idea 2: 

Upon patient discharge from hospital, establish a mandatory disclosure of personal health information to a First Nations, Métis or Inuit data custodian, as determined through an Indigenous-led process indicated in Policy Idea 1. 

A mandatory disclosure requirement upon patient discharge may: 

• Ensure critical information flows for timely follow-up, post-discharge care and wrap-around supports as Indigenous patients seek health care following discharge back in their home community or health centre   

Proposed alignment with UNDRIP:  

• Self-determination and self-government (Articles 3, 19 and 20 (1)) 
• Right to health without discrimination (Articles 21-24)    

Policy Idea 3: 

Establish a new set of requirements for health researchers that wish to carry out health research involving First Nations, Métis, or Inuit personal health information: 

• Require health researchers to follow community-led protocols of First Nations, Métis, or Inuit if they are to conduct any health research involving Indigenous personal health information. These protocols could be determined by the self-determined custodian identified in Policy Idea 1.   
• Require any custodian that holds First Nations, Métis, or Inuit personal health information (e.g., a health authority) to refuse to disclose that information to a health researcher if there is a risk of harm to First Nations, Métis, or Inuit as a result of the disclosure. “Risk of harm” would be defined in partnership with First Nations, Métis, or Inuit.  

Proposed alignment with UNDRIP:  

• Self-determination and self-government (Articles 3, 19 and 20 (1)) 
• Consultation on matters affecting Indigenous rights (Article 18)  

Policy Idea 4:  

Ensure robust privacy and security safeguards that enhance trust in how personal health information is managed in the B.C. health care system and ensure equitable access to personal health information by mandating that patients can access their health information free of charge.   

Proposed alignment with UNDRIP:  

• Right to privacy as a human right (Article 1)  
• Self-determination (Articles 3, 19 and 20 (1)) 
• Right to health without discrimination (Articles 21-24)    

For more information

You are encouraged to reach out if you would like to understand the overall policy framework in more detail. The team can be contacted at: HIMA@gov.bc.ca