Invitation to take part in a citizen panel on accessing precision therapies for children and youth in Canada

Do you have experience caring for a child who has a chronic or complex illness? Are you interested in participating in an exciting online virtual event on Friday 25 June 2021 hosted by the McMaster Health Forum and SickKids on the topic of accessing precision therapies for children and youth in Canada?

What is a citizen panel?
An opportunity for people just like you to meet and discuss important issues so that those who are in a position to make changes are better informed to do so. Each panel is composed of 10-16 citizens affected by pressing health issues or by future decisions regarding these issues. The deliberations of each citizen panel will be informed by a plain-language brief that provides information about an issue, options for addressing it, and/or relevant implementation considerations.

What is the topic of this citizen panel?
Accessing precision therapies for children and youth in Canada.

This issue is particularly important given that:
  • precision therapies may be the best option for some hard-to-treat or rare diseases especially in children;
  • such therapies are expensive and may not be publicly funded or not be available to all Canadians;
  • Canadians may have differing opinions on the values or principles that should be considered when deciding what therapies should be publicly funded; and

  • Canadians may have differing opinions on the values or principles when deciding between therapies for children and adults.

There is a need for a public conversation about accessing precision child therapies in Canada. This citizen panel is a unique opportunity to have your voice as a caregiver heard on this pressing issue.

When and where will this take place?
Where: the panel will be held virtually through an online platform

When: Friday June 25th, 2021, 9:00 a.m. to 12:00 p.m. (Pacific)/12:00 p.m. to 3:00 p.m. (Eastern)/1:00 p.m. to 4:00 p.m. (Atlantic)

What will you be asked of you if chosen for the panel?
If you are chosen for the citizen panel, we ask you to do three things:

  1. Review a package of information sent to you prior to the panel which will include watching a few videos online;
  2. Attend the panel virtually through an online platform; and
  3. Complete three questionnaires: one prior to the panel, one immediately following panel, and one 6-months after the panel

How will you benefit if chosen for the panel?

You will be offered a $100 virtual gift card as a token of appreciation for taking part in the citizen panel and completing the questionnaires. Lastly, you will have the opportunity to inform researchers and decision makers on a pressing health issue.

What to do if you are interested in being considered for the panel?

If you are interested in being considered for this panel, please contact the McMaster Health Forum by June 16th to advise us of your interest and availability at forum@mcmaster.ca. We look forward to working with you on this important issue.

Please note that you are under no obligation to attend the panel, and there is a chance you will not be chosen for the panel. Unfortunately, due to limited spaces available the selection is done on a first come, first serve basis. If you are not contacted by a representative in the next 10 days, we hope to have the opportunity to invite you to participate in a future panel discussion.

The citizen brief, and the citizen panels it was prepared to inform, were both funded by the Pediatric Oncology Group of Ontario (POGO). The McMaster Health Forum receives both financial and in-kind support from McMaster University.