Health Data Research Network (HDRN) beta test webinar March 31

[A Former User]

An opportunity for patients and members of the public to participate in, and provide feedback on, a beta version webinar created by Health Data Research Network Canada at noon Eastern time on Tuesday, March 31, 2020. Health Data Research Network Canada is a newly formed not-for-profit corporation established to deliver the SPOR Canadian Data Platform created under the federal government's Strategy for Patient-Oriented Research (SPOR) as well as other (future) health data related initiatives.

Health Data Research Network Canada has an Interim Public Advisory Council (iPAC) which has helped us realize that we need to tailor our communications intended for the public to focus on the content and questions that are most relevant to members of the public (as opposed to providing plain language versions of the content that we prepare for researchers, policy makers and other stakeholders).

Incorporating advice from the iPAC, we are developing a ~20 minute informational webinar about Health Data Research Network Canada. We would like to trial the beta version webinar in English at the end of March, then refine and trial it again in French, before we refine it further and deliver it publicly in the summer or early fall. Because this webinar is intended for members of the public, we are also interested in having people who have not been involved in SPOR participate and provide feedback on the beta version webinar.

Registration is at this link. The webinar will be on Tuesday, March 31st from 12:05-12:25 Eastern time, and with an optional ~30 minutes for live feedback immediately after the webinar. We will also use an online survey to gather feedback on the beta webinar. If people want to provide advice but are unavailable to participate at noon Eastern time on March 31, Nicole Yada (nicole.yada@ices.on.ca) can provide the slide deck and recorded version of the webinar and a link to the survey.

Please also note that we consider this to be quality improvement, not a research study, but we may share the feedback that we receive outside of Health Data Research Network Canada to help other organizations learn from the advice we obtain. If we do share information about what we learn, we will not identify individuals or attribute comments and feedback to specific people. If you have any questions about this, please contact Alison Paprica (alison.paprica@ices.on.ca).

This email is being sent to people that we thought may have a direct interest in participating (i.e., patients involved in SPOR entities), and people who would know of potential participants (e.g., leads for SPOR entities). Please do forward the invite to others who may have an interest, in particular, to friends and other people who have not been involved in SPOR initiatives previously.

Thanks in advance to those who agree to participate and provide advice.

Register here

Sent on behalf of Health Data Research Network (HDRN) by:

Alison Paprica, Lead for the HDRN Public Engagement Working Group

Frank Gavin, Chair of the HDRN Interim Public Advisory Council

[A Former User]

Thank you - I have registered. I have recently joined a research study (not clinical trials) as a co-investigator, along with several other patient partners, and it is all new to me, so this might help - I am reading anything and everything I can get my hands on at the moment. I will share this with my fellow patient partners.

[A Former User]

Thanks Annette. Registered

[A Former User]

Thanks for sharing Annette. I will be out of town for the live session, so registered to receive the deck and send feedback .early testing is a great approach .