Health Information Governance

What is First Nations Health Information Governance?

"First Nations Health Information Governance" is a component of First Nations Health Governance and refers to the structure, process and protocols by which First Nations in BC have access to First Nations Data and are influentially involved in decision-making regarding the culturally appropriate and respectful collection, use, disclosure and stewardship of that information in recognition of the principle that such information is integral to First Nations policy, funding and health outcomes.

The Tripartite Data and Information Planning (TDIP) Committee was established to implement the Tripartite Data Quality Sharing Agreement (TDQSA) and develop the processes, evaluation criteria and policies required to adjudicate the First Nations Client File (FNCF) Data Access Requests (DARs). The FNCF is a cohort of BC Resident First Nations people registered under the Indian Act, and their unregistered descendants for whom entitlement-to-register can be determined, linkable on their BC Ministry of Health Personal Health Number. As of 2012, TDIP Committee has reviewed fifteen FNCF DARs, twelve of which were approved. The Tripartite partners would like to ensure that:

• First Nations are involved in all decision-making regarding use of the FNCF and FNCF data;
• the privacy of individuals and communities is protected;
• topics of priority interest to First Nations are prioritized;
• information from the FNCF can be available for First Nations to plan at a community and regional level;
• the FNCF be cautiously and carefully used in an open and transparent way.

With the transfer of Health Canada programs and services to the FNHA, the TDIP Committee is undergoing transition to a bilateral Data and Information Planning Committee (DIPC) between the Ministry of Health and the FNHA. DIPC continues to govern the FNCF and develop data management processes to facilitate First Nations access to data.


First Nations Data Governance Discussion Sheet

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Download a PDF version here (98 KB)


Research Rounds #1: How information is collected (PDF 360 KB)


Regional Data Governance Forums

The FNHA RKEE team hosted a series of Regional Data Governance Forums (announced in a previous eBlast here).

The Data Governance Forums were held to help shape how we measure wellness indicators, use identity management and develop research ethics at the FNHA.

Below are presentation materials from the sessions:

Introduction

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Presenters: Gwen Phillips, Director, Governance Transition, Ktunaxa Nation and First Nations Health Council Member

and

Mark Matthew, Manager, Engagement and Coordination, First Nations Health Authority


The Backdrop for Development of First Nations Peoples’ Data Governance and Health Indicators

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Presenter: Jeff Reading, PhD, First Nations Health Authority Chair in Heart Health and Wellness at St. Paul’s Hospital and Professor, Simon Fraser University.

Data Governance Stories

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Presenter: Gwen Phillips, Director, Governance Transition, Ktunaxa Nation and First Nations Health Council Member

BC First Nations Data Governance Initiative: Reporting Reform

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Presenter: Gwen Phillips, Director, Governance Transition, Ktunaxa Nation and First Nations Health Council 

Wellness Indicators

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Presenters: Gwen Phillips, Director, Governance Transition, Ktunaxa Nation and First Nations Health Council Member

and

Rebecca Lee, Wellness Outcomes Evaluation Specialist, Research, Knowledge Exchange, and Evaluation

Research Ethics Framework

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Presenters: Meghann Brinoni, Manager, Research, Knowledge Exchange, and Evaluation

and
 
Naseam Ahmadi, Senior Project Coordinator, Research, Knowledge Exchange, and Evaluation


Client Service Profile Custodianship

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Presenters: Gwen Phillips, Director, Governance Transition, Ktunaxa Nation and First Nations Health Council Member

and Joseph Mendez, Vice President, Innovation & Information Management Services / Chief Information Office, FNHA.


Closing Remarks

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Presenter: Gwen Phillips, Director, Governance Transition, Ktunaxa Nation and First Nations Health Council Member


Data Management

For more information, or to ask a question please contact: rkee@fnha.ca