Partner With Me

 

Committess and Conferences

INSTITUTION AND LOCATION	TITLE	DATES
CIHR Institute of Genetics	Member Institute Advisory Board	Sep 2019- Present
Solutions for Kids in Pain Knowledge Mobilization Network	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
BC Children’s Hospital Biobank	Member, Biospecimen Advisory Committee	2014-Present
Rare Disease Foundation	Board Chair	2009-2021
Rare Disease Foundation	Board Member	2008-Present
Society for Medical Decision Making 40th Annual North American Meeting Decision Making Across the Lifespan	Meeting Co-chair	Oct 2018
Strategy for Patient Oriented Research Chronic Pain Network	Member Knowledge Translation Committee	2016-2018
National #hcsmca Symposium for Health Care And Digital Communication	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.