Patient Engagement Opportunities

Health Data Social Licence White Paper

Health Data Research Network Canada (HDRN) and the Unité de soutien au système de santé apprenant (SSA) du Québec are leading the development a Health Data Social Licence White Paper. A white paper is a report to educate readers about a topic and often identifies potential solutions. The Health Data Social Licence White Paper project is funded by the Public Health Agency of Canada and will support the development of the Pan-Canadian Health Data Strategy. In brief, HDRN and the Unité de soutien SSA du Québec are seeking volunteers who will work together to identify data-related expectations, rights, conditions, and obligations to include in the Health Data Social Licence White Paper. Because previous studies have indicated that health data sharing, linkage, and access is a complex and poorly understood topic, we are seeking individuals who already have some knowledge of health data uses through their roles on patient, public, or community advisory groups. 

There are two roles you can apply for: 

1. Be a member of the English or French participant team ($100 honorarium)   

  • Generate and submit individual suggestions before the first meeting 
  • Participate in two 2-hour working meetings  
    • English language meetings February 7 AND February 22, 1-3 p.m. Eastern  OR  French language meetings February 9 AND February 23, 1-3 p.m. Eastern  
  • Review and strengthen the Health Data Social Licence White Paper in April/May 2022 before it is finalized  

2.    Choose to participate only as a peer reviewer ($25 honorarium)

  • Review and strengthen the Health Data Social Licence White Paper in April/May 2002 before it is finalized 

Additional information about the project is available in the backgrounder document.  

Applicants must complete an online survey and provide the name of one reference who can confirm their experiences as an advisor by December 8, 2021. Applicants will be notified of HDRN and Unité de soutien SSA du Québec decisions in January 2022.

For more information, please contact alison.paprica@ices.on.ca.