ASK US series: The Right to Participate

Right to Participate is an initiative at BC Children’s and Women’s hospital to develop and clarify respectful ways in which patients and families can be contacted to participate in research. This goes beyond permission to contact; it is about ensuring all patients and families have the right to learn about research opportunities that interest them and to be able to make informed decisions about whether they would like to participate.

 

Our keynote speaker for this episode is Jennifer Claydon, manager, Clinical Research Support Unit at BC Children’s Hospital Research Institute, who is co-leading the Right to Participate initiative.

 

Joining Jennifer will be Rebecca Barnes, executive director, Network of Networks (N2) Canada – an alliance of research networks and organizations, who brings an extensive array of knowledge with consent and permission to contact programs, and Alison Orth, director, Clinical Trials BC (part of Michael Smith Health Research BC), who brings understanding of patient and participant experiences in clinical trials and their preferences to learning about clinical research opportunities.

 

Join us for this exciting episode to conclude season four of our ASK US webinar series.

Learning objectives

Learn about:

• recruiting participants for research studies in a respectful way
• the Right to Participate initiative
• why the initiative is so important for creating a better research environment.

Speakers

 

Jennifer Claydon 

Manager, Clinical Research Support Unit

BC Children’s Hospital Research Institute

 

Jennifer Claydon is the manager of the Clinical Research Support Unit at BC Children’s Hospital Research Institute. She has been facilitating research for over 20 years, at both the BC Women’s Hospital and Health Centre and BC Children’s Hospital, co-located on Oak Street. During her career, she has been involved in the conceptualization, set-up and execution of various clinical research studies, including clinical trials.

 

In her current role, she is working to improve the quality of research undertaken at BC Children’s by focusing on education and training, mentorship and access to specialized support services. She is also helping to foster a positive research culture by leading new initiatives focused on improving participants’ experiences in research and engagement of point-of-care staff. 

 

One of the projects she is co-leading, in collaboration with Holly Longstaff, director of research integration and innovation, research & academic services, Provincial Health Services Authority, is the Right to Participant Initiative. The Right to Participate Initiative aims to ensure that all patients and their families are provided with the right to learn about research opportunities that may interest them, and that they are invited to participate in a good and respectful way.

 

Rebecca Barnes 

Executive director, Network of Networks (N2)

 

Rebecca began her career as a bench cancer researcher. Over the past 15 years, she has worked in different leadership roles with the common thread of enhancing health research capacity through sustainable systems, processes and robust community engagement.

 

Prior to joining N2, she was responsible for helping to lead the Canadian Tissue Repository Network and oversaw research engagement for the Vancouver Island Health Authority by leading the CIHR Strategy for Patient-Oriented Research (SPOR) initiative within the Vancouver Island region. Most recently, she worked as director of the University of Victoria’s office of the vice-president, research and innovation. She holds a bachelor of science in biology and a master’s degree in environmental toxicology/carcinogenesis.

 

Alison Orth

Director, Clinical Trials BC

Michael Smith Health Research BC

 

Alison is a health research leader with over 25 years of experience leading multi-disciplinary teams and organizations in both the private and public sectors. Since her early days as a research assistant at BC Children’s Hospital, Alison has facilitated over 80 industry and grant-funded research and evaluation studies. Before Clinical Trials BC, Alison’s previous roles include vice president of TASC Research Services and clinical research leader at Fraser Health.

 

Alison recently led the development of a vision for clinical trials in British Columbia. She actively maintains her ACRP-CRC certification and serves on several provincial and national committees dedicated to advancing clinical trials and improving the clinical trial experience for participants. She is a long-standing committee member and past chair of the N2 Public Engagement Committee (formerly Clinical Trials Education and Awareness), a member of the national CIHR-funded ACT consortium systems transformation committee, a member of the ACRP Partners Advancing the Clinical Research Workforce and a leadership council member of the Decentralized Trials and Research Alliance.

Host

 

Jean Smart, PhD

Regulatory affairs & quality officer, Clinical Trials BC

Privacy officer, Michael Smith Health Research BC