INSTITUTION
AND LOCATION
|
TITLE
|
DATES
|
Member Institute
Advisory Board
|
Sep 2019- Present
|
|
Co-Chair Patient
and Caregiver Advisory Council
|
Jun 2018- Present
|
|
Information Privacy and Security
Standing Committee, Ministry of Health
|
Committee
Member, Digital Communications Working Group
|
2018- 2019
|
Member, Biospecimen
Advisory Committee
|
2014-Present
|
|
Board Chair
|
2009-2021
|
|
Board Member
|
2008-Present
|
|
Meeting Co-chair
|
Oct 2018
|
|
Member Knowledge
Translation Committee
|
2016-2018
|
|
Member, Symposium
Organizing Committee
|
July 2015-March
2016
|
Canadian Institutes of Health Research Operating Grant; BK Potter, P Chakraborty (April 2017-March 2020)
Designing interventions to improve delivery of health care for children
with inherited metabolic diseases: family and provider perspectives
Role: Knowledge
User Co-Investigator: I serve as one of three patient co-investigators. We
have a dual role as representatives of the rare disease community. Firstly, we
work with the team in ensuring that materials and study design are created
through the lens of a patient and family centred approach. Secondly, we will
work with our communities to help find an engaged community to ensure the
viability of the materials and design that will be used in the project.
Canadian Institutes of Health Research
SPOR; S. Vercauteren (May
2017-Mar 2018)
Giving
Patients and Health Care Providers a Voice in Pediatric Biobanking
Role: Knowledge User and
Patient Representative: I provided a parent’s perspective on this project. I
played a key role in informing health care providers and community members of
the patient-family experience and facilitated engagement with patient
representatives.
Canadian Institutes of Health Research
Operating Grant: Knowledge to Action; C Chambers (PI), E Ehm (PI);
04/01/15-03/31/17
It Doesn’t Have to Hurt: A
Science-Media Partnership to Mobilize Evidence about Children’s Pain to
Parents
The purpose of this grant was to disseminate
knowledge about managing children’s pain to the people responsible for their
daily care: their parents and/or guardians.
Role: Parent
Partner: I served on a panel of parent advisors that initially met via
phone or email in order to provide guidance in what pediatric pain information
was relevant to our lived experience. We then were consulted periodically
throughout the year to provide perspective on the relevance of language,
relevance and appropriateness of monthly postings.
