Partner With Me


 
Committess and Conferences

INSTITUTION AND LOCATION
TITLE
DATES
Meeting Co-chair
Oct 2018
Member Knowledge Translation Committee
2016-Present
Member, Biospecimen Advisory Committee
2014-Present
Board Chair
2010-Present
Board Member
2008-Present
Member, Symposium Organizing Committee
July 2015-March 2016


Research Projects
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.