Preserving Patient Privacy: The Crucial Role of Advocacy Groups in Canada

Brigitte Léonard, scientific writer and content developer at CACHEducation, a not-for-profit organization designed to provide in-depth and ongoing training for persons eager to develop the skills necessary to be a professional patient advocate in today’s complex healthcare environment.

Having spent over 20 years in Pharmaceuticals, Brigitte has contributed to developing life-changing treatments for patients, always upholding the highest ethical standards. Now, she desires to share her knowledge and utilize her scientific, strategic, and communication skills to benefit the patients’ community.

She obtained her Ph.D. in Biomedical Sciences from Université de Montréal in 2003. Her doctoral research was conducted under the supervision of Dr. Denis-Claude Roy at Guy-Bernier, Maisonneuve-Rosemont Hospital Research Center. She developed a quantitative diagnostic assay in non-Hodgkin’s lymphoma and evaluated the relevance of this marker in the patient’s outcome.

Victoria has 6 years of post-secondary education with a Bachelor’s Degree in Psychology and a Post-Degree Diploma in Human Resources and Leadership. She is an Associate Editor at Zeal Access, a consulting company specialized in medical communication and patient advocacy. In this position, she is responsible for writing continuing medical education (CME) grants, developing resources for CME programs, and creating content for a variety of audiences across multiple digital platforms. Victoria brings her strong communication skills, attention to detail, and belief in life-long learning to the CACHEducation team.

What is Patient Advocacy?

This course will introduce students to the important role that patient advocacy provides to society. The course will also discuss the different types of advocacy groups (fundraising, awareness raising, research, policy, etc) and advocacy jobs.

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Starting a Patient Advocacy Group

This course will focus on the different regulatory requirements involved in starting advocacy groups (charity, non-profit, CRA, provincial laws, board members, etc). The course will also provide a list of pros and cons of starting a new organization.

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Introduction to the Canadian Health Care system

This course will educate students about the different entities in the Canadian health care system (Health Canada, CADTH, PMPRB, Provincial Ministries, pCPA, INESSS, etc) and how they interact with patient advocacy groups.

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Online Presence: Website Design and Social Media

This course will reinforce the concept that most people get their medical information online. A good patient advocacy group should be a source of accurate and up-to-date information (via a well-designed website) and have an infrastructure to share that information (social media).

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Drug Development

Advocacy groups often work closely with researchers to find a better treatment for a condition. This course will introduce students to the design of the more common studies used in developing a drug (e.g., in vitro studies, preclinical studies, clinical studies, registries, etc.).

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Clinical Trials: Introduction

This course will introduce the different types and phases of clinical trials. Students will also understand the roles that basic science researchers, clinical researchers, industry, and advocacy groups play in the different types of research.

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Treatment Options

This course will introduce students to the more common types of treatments used for various conditions. This course will also cover the different types of medicines commonly prescribed (medical foods, targeted therapies, enzyme replacement therapy, gene therapy, etc.).

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Review and Final Exam

The final class will consist of a 30-minute review of key concepts covered in this program using a case study example. That will be followed by a 30-minute written exam.

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James has a PhD in Pharmacology and over 20 years of experience as a medical and grant writer. He has worked with numerous advocacy groups, both large and small (CORD, Rare Disease Foundation, Global Genes, NORD, etc) as well as numerous funders (Takeda, Sanofi, Jazz, Ultragenyx, Alexion, Genentech, etc).

Jim is co-founder of Zeal Access, a company devoted to helping advocacy groups be better advocates. Jim is also Medical Education Director at CheckRare CE, a company that produces continuing education programs for healthcare professionals. Jim’s educational grants have garnered over $1.5 million in funding to educate people about rare conditions.

Ms. Petruk’s career has spanned over 30 years in pursuit of helping others.
Her career as a Human Resource Professional with a variety of industries and organizations has positioned her to have an well-developed knowledge, skills and abilities in leading others. Ms. Petruk obtained her Certificate in Strategic Management in Human Resources and Labour Relations and an MBA in Community economic development from Cape Breton University.

Cheryl has served on many volunteer not for profit organizational boards, in a variety of capacities which included direct leadership in guiding and directing these organizations to fulfilment of their strategic organizational objectives.

Her passion for transferring her knowledge has led to a teaching career in post-secondary education in the business and Health Care Administration Faculty with four colleges in Ontario Canada.

As a result of a personal experience with her late husband having a diagnosis of a rare blood cancer, called Myelofibrosis, Cheryl utilized her skills in leadership and not for profit sector in being a founding member and first leader of the Canadian MPN Network, Patient Advocacy Group, the founder and current executive director of the Canadian MPN Research Foundation as well as participating in other MPN and Healthcare related organizations.

Cheryl is a sought after public speaker, speaking to a variety of audiences about her experiences in patient advocacy and education and her translational and servant leadership.

These experiences have led Cheryl along with her colleagues, Brad Crittenden and James Radke to establish CACHEducation. A not for profit organization designed to transfer the knowledge of patient and health Advocacy to those who are inspired and guided to help others in advocating for their patients and community. Her passion for help others continues in her endeavors.

Brad had a normal childhood playing sports, waterskiing and paddling. Brad studied mechanical engineering and CAD/CAM, where he also worked as a teaching assistant in the continuing education program. He first worked as a research engineer, managing programs and teams that developed hi-tech engineered wood products. While operating a website design business, Brad was diagnosed with Pompe disease in 2006. Since then he has led the Canadian Association of Pompe (CAP), a patient group for families affected by Pompe. Brad is CAP’s executive director, planning and managing many live and virtual patient educational events, and has been responsible for budgeting and accumulating over $750k in grants. He has represented the organization in communications with patients, other patient advocacy groups and industry.

Brad sits on the board of the International Pompe Association and on advisory boards and committees for Muscular Dystrophy Canada, Global Genes and the NZ Pompe Network. Brad is also co-founder of Zeal Access, which provides services to patient groups and works with other organizations and disease experts to produce continuing education content.