CCB and Clinical Trials Ontario

Clinical Trials Ontario Logo.

Canadian Council of the Blind along with 20 other health charities, patient organizations, and research networks, and led by Clinical Trials Ontario, submitted this input to Health Canada on its consultation paper related to its Regulatory Modernization Initiative. Health Canada is proposing to modernize the regulatory framework for clinical trials related to human drugs, medical devices, non-prescription drugs, and natural health products as part of the Health and Biosciences Sector Regulatory Review Roadmap. We felt that this was an important opportunity to provide input based on our community’s perspective especially related to patient engagement with Health Canada and within the clinical trials environment in Canada, transparency of clinical trial results, and ways for Canadians to find clinical trials if they are interested in participating in a clinical trial, to name a few areas.

CCB Join with the Council of Canadians with Disabilities

Council of Canadians with Disabilities (CCD)

Founded in 1976, the Council of Canadians with Disabilities (CCD) is a national human rights organization of people with disabilities.  CCD’s mission and mandate are as follows:

Mission -CCD is a social justice organization of people with all disabilities that champions the voices of people with disabilities, advocating an inclusive and accessible Canada, where people with disabilities have full realization of their human rights, as described in the UN Convention on the Rights of Persons with Disabilities (CRPD).

Mandate – CCD unites advocacy organizations of people with disabilities to defend and extend human rights for persons with disabilities through public education, advocacy, intervention in litigation, research, consultation and partnerships. CCD amplifies the expertise of our partners by acting as a convening body and consensus builder.

CCD’s members are provincial/territorial cross-disability, consumer-controlled, human rights organizations and national uni- and cross-disability, consumer-controlled, human rights organizations. CCD’s members are:

  • Disability Alliance BC
  • Voice of Albertans with Disabilities (VAD)
  • Saskatchewan Voice of People with Disabilities (SVOPD)
  • Manitoba League of Persons with Disabilities (MLPD)
  • Citizens with Disabilities — Ontario
  • Confédération des Organismes de Personnes Handicapées du Québec (COPHAN)
  • Nova Scotia League for Equal Opportunities (NSLEO)
  • PEI Council of People with Disabilities
  • Coalition of Persons with Disabilities–NFLD and Labrador (CODNL)
  • NWT Disabilities Council
  • Canadian Association of the Deaf (CAD)
  • Canadian Council of the Blind (CCB)
  • National Educational Association of Disabled Students (NEADS)
  • National Coalition of People who use Guide and Service Dogs of Canada
  • National Network for Mental Health (NNMH)
  • Thalidomide Victims Association of Canada

CCD’s governance body is the National Council.  Each member appoints a representative to the National Council and there are also five seats for members-at-large from communities pushed to the margins.  The National Council meets regularly, providing an opportunity to exchange information about disability rights, public education initiatives, advocacy campaigns, legal interventions, research, consultation and partnerships occurring across Canada.  Members can contribute to policy development by participating on working groups and committees.

During this past year, CCD’s advocacy work has been focused on amplifying the concerns of people with disabilities during the COVID-19 pandemic, keeping disability poverty and the promised Canada Disability Benefit on the federal government’s agenda, drawing attention to how Medical Aid in Dying puts people with disabilities in harm’s way, and monitoring Canada’s implementation of the CRPD. Also during the past year, CCD has been modernizing the organization by reviewing and updating its policies and procedures and committee structure, so that we remain an effective advocate for an accessible and inclusive Canada. 

IMAGE Project

IMAGE (Internet Multi-Modal Access to Graphical Exploration) Project

As is well known, the vast majority of internet graphics are not accessible to non-visual users.  To tackle this problem, McGill University’s Shared Reality Lab, in strategic partnership with the Canadian Council of the Blind (CCB) and Gateway Navigation CCC Ltd, is working on the IMAGE project, funded by Innovation Science Economic Development Canada through the Assistive Technology Program.

The project’s objective is to develop multi-modal feedback (audio and touch) tools enabling users to gain a deeper understanding of internet graphics than is presently available to blind, deaf-blind, or low vision users.  The project team is actively recruiting participants, inviting volunteers to complete the on-line survey (available both in English and French), to work with the researchers in developing tools to facilitate graphical exploration on the internet.

To get involved or for more information click on the link below:

http://srl.mcgill.ca/atp

DECLARATION OF PERSONAL HEALTH DATA RIGHTS IN CANADA KEY MESSAGES

The Declaration of Personal Health Data Rights in Canada was developed by a patient and caregiver-led Data Working Group formed in 2019 from the annual Patients Redefining the Future of Healthcare in Canada Summit. The working group undertook a brief review of the current landscape related to personal health data. Various drafts have been revised with feedback from a range of health data custodian perspectives, but with a major focus on the perspectives of patients, caregivers, patient groups, and citizen groups. Since the Declaration’s launch in June 2021, it has been endorsed by 20 patient groups as well as 9 individual patients and caregivers.

Personal health data are critical to patient safety and quality care leading to better health outcomes, while fuelling research and innovation to benefit individuals, groups, and the general public. The Supreme Court of Canada has found that people own and have a continuing interest in and control over their personal health data, while custodians of those data own the records. Because of this, people in Canada have corresponding rights over the personal health data they provide. These eleven rights are: to be informed; to consent; to access, portability & correction; to de-identification; to benefit; to object to processing; to restrict processing; to a complaint process; to privacy & security; to erasure; and to engagement.

The intent of the Declaration is to create greater consensus on the fundamental principles associated with personal health data, particularly from the perspective of patient and citizen groups; in order to encourage the health ecosystem to work out how to achieve these principles efficiently and effectively in partnership with industry, policy-makers, other data custodians, and patients.

You can read the Full Declaration here https://saveyourskin.ca/wp-content/uploads/Declaration.pdf

You can read the Executive Summary of the Declaration here https://saveyourskin.ca/wp-content/uploads/SummaryofDeclaration_EN_Endorsed.pdf

Patients Redifining The Furture of Health Care in Canada.
Endorsements as of June 14, 2021
Organizations
HeartLife Foundation
badgut.org
Canadian Spondylitis Association
Canadian Psoriasis Network
Unmasking Psoriasis
hpv global action
Lung Health Foundation
amiquebec
rethink breast cancer
CCRAN
The Life Raft Group
Carcinoid-NeuroEndocrine Tumour Society Canada
Canadian Congenital Heart Alliance
Myeloma Canada
Schizophrenia Society of Canada
Save Your Skin Foundation
All Can Canada
Canadian Council of the Blind
Individuals
Alan Husng, Vancouver, BC
Alies Maybee, Toronto, ON
Amy Ma, Montreal, QC
Andrea Redway, Ottawa, ON
Gillies Carson, Mont-Tremblant, QC
John Sawdon, Whitby, ON
Margriet Eygenraam, Brampton, ON
Michael Eygernraam, Brampton, ON
Robin Sully, Ottawa, ON

Governement Engagement on the Disability Inclusion Action Plan

Opened on June 4, 2021 and will close on August 31, 2021.

The Government of Canada is consulting Canadians on how to improve the lives of Canadians with disabilities. Your feedback will support the development of the Disability Inclusion Action Plan.

The Disability Inclusion Action Plan will focus on:

  • reducing poverty among Canadians with disabilities
  • getting more persons with disabilities into good quality jobs
  • helping meet the Accessible Canada Act goal of a barrier-free Canada by 2040
  • making it easier for persons with disabilities to access federal programs and services
  • fostering a culture of inclusion

How to participate

Share your ideas online

Please complete the online survey.

Participate by mail or video

You can also print, complete and mail the survey by August 31, 2021 to the address in the contact information below.

Video responses

You can also submit an ASL or LSQ video of your responses to the email address in the contact information  below. 

Who is the focus of this consultation

We invite all Canadians to participate in this consultation. We want to hear from:

  • persons with a disability
  • organizations working with persons with a disability
  • caregivers or family members of persons with a disability
  • persons identifying as First Nations, Inuk (Inuit), Métis or Indigenous
  • members of racialized groups, the LGBTQ2 community or an official language minority community
  • all Canadians

Key questions for discussion

The survey asks questions about:

  • financial security
  • employment
  • disability-inclusive spaces
  • a modern approach to disability

Related information

Contact us

Disability Inclusion Action Plan
Employment and Social Development Canada
140 Promenade du Portage, Phase IV
Gatineau QC  K1A 0J9

Email: [email protected]

The government of Canada is Hiring!

As part of the Government of Canada strategy for hiring for diversity and our commitment to hiring over 5000 persons with disabilities by 2025,  we are pleased to share with you two new recruitment inventories for persons with disabilities in the following fields:

Digital / Information technology

The Government of Canada has the largest technology operations in the country. Our work is fundamental to:

  • providing secure online access to services
  • ensuring Canadian values are included in the use of artificial intelligence and emerging technologies
  • unlocking the potential of open data
  • enabling the way to the digital age

Policy and Data Analysts

Policy and Data Careers in the public service are as varied as the number of departments and agencies in the Government of Canada. You could be:

  • conducting research, studies, forecasts and surveys
  • participating in consultations and exploring various models to support government priorities
  • developing policies on guiding government investment programs and economic development activities
  • developing, analyzing and interpreting qualitative and quantitative information and socio-economic policies and recommendations

Visit this web page to find out more about these and other opportunities available with the Government of Canada.  Please note that to be considered for these opportunities, you are required to self-declare as a person with a disability when you apply. 

Want to know more?  Email us to register for one of our information sessions where we will discuss how to apply, what to expect when applying and answer any questions you may have.  

Are you a student? Launch your career with a student job in the federal public service!  We offer a variety of jobs across the country in several fields.

We hope that you will consider the Government of Canada for your next career choice.

GC Recruitment Team
[email protected]

Join the conversation:

#MyNextJob
#GCJobs
#NothingWithoutUs

The Cost of Vision Loss in Canada

Stop the crisis of preventable blindness

Over 1.2 million Canadians are blind, deaf-blind, or partially sighted, and the number of Canadians living with vision loss (VL) is growing everyday. This has profound implications for individuals communities, the economy, and our healthcare system. The Cost of Vision Loss and Blindness in Canada, is a new report that provides an up-to-date assessment of the prevalence and cost of vision.

The growing VL crisis affects all Canadians and will continue to do so. The report outlines the financial impact vision loss has on individual, Canadian families, and our health system. This is an urgent crisis, and with the findings of this report, it is clear that a National Vision Health Plan is needed to provide access to eye exams, therapies, prevention measures and funding for ongoing research.

The Cost of Vision Loss and Blindness in Canada is a joint initiative of the Canadian Council of the Blind (CCB), Fighting Blindness Canada (FBC), the Canadian Association of Optometrists (CAO), and the Canadian Ophthalmological Society (COS).

For more information, or to read the full report, please visit stopvisionloss.ca

Cost of Vision Loss & Blindness Summit

Cost of Vision Loss & Blindness Summit
Wednesday, May 26, 2021, 2 – 3:45 pm ET

 

Webinar logo

In 2009 a study was undertaken to uncover the cost of vision loss in Canada. In the past ten years, much has changed in vision care in Canada. This year, the Canadian Council of the Blind and Fighting Blindness Canada (FBC) have partnered on a landmark study to evaluate how the cost of vision loss and blindness has changed. Join us to learn about the results of the report and hear perspectives of this data from optometry, ophthalmology and patient advocates.

Featured speakers:
Dr. Keith Gordon, Senior Researcher, Canadian Council of the Blind
Dr. Michael Nelson, President of the Canadian Association of Optometrists
Dr. Colin Mann, President of the Canadian Ophthalmology Society
Louise Gillis, President of the Canadian Council of the Blind
Doug Earle, President & CEO of Fighting Blindness Canada

This program is presented by Bell Canada.

There will be time for Q&A. Please send questions in advance to [email protected]

This program is presented by Bell Canada.

Event Sponsors

REGISTER FOR THE COST OF VISION LOSS SUMMIT

The Cost of Vision Loss & Blindness in Canada

New report reveals vision loss costs Canada almost $33 billion annually


The Canadian Council of the Blind, partnering with Fighting Blindness Canada, and key partners, the Canadian Association of Optometrists and the Canadian Ophthalmological Society, commissioned new research, The Cost of Vision loss and Blindness in Canada, from Deloitte Access Economics, to identify Canada’s emerging crisis of preventable blindness.

TORONTO, May 5, 2021 /CNW/ – Released today, a new report reveals the emerging crisis of preventable blindness in Canada, totalling almost $33 billion and impacting all Canadians– including individuals, families and governments.

Living with vision loss negatively impacts an individual’s financial health and often represents a loss of independence affecting their quality of life. As Canada’s population ages, the main drivers of vision loss are more prevalent and will increasingly impact Canada’s health system and economy.

The Cost of Vision Loss in Canada Report (“the Report”) shows 1.2 million Canadians are living with vision loss, with many facing a lack of investment in services and supports that impact them to live life to its fullest potential. This number is expected to grow to 2 million people by 2050, which is concerning given 75 percent of vision loss is either reversible, preventable or treatable if caught early.

The Report revealed the costs that Canadians with vision loss experienced in 2019 as:

  • Direct health care costs – $9.5 billion
  • Indirect health care & other costs – $6.1 billion
  • Cost of well-being – $17.4 billion

“The direct health care costs highlight the need to reduce the progression of eye diseases and vision loss through preventive health measures,” said Keith Gordon, Ph.D., the principal investigator of the Report. “The research demonstrates that the affected individuals and their families primarily bear 65% of the costs of living with vision loss.”  

Federal government leadership for families impacted by vision loss is long overdue.
In 2003, the Government of Canada committed to the World Health Organization (WHO) to develop a Vision Health Plan for Canada by 2007. Despite this commitment, there is no vision care plan for Canada.

Beyond the Vision Health Plan, the federal government must also ensure the Canadian health care system and the provinces and territorial governments can meet the growing need for eye care services. There is a need to slow the progression of vision loss and the incidence of eye disease through preventive health.

When governments cover the costs of comprehensive eye examinations, this leads to early detection and diagnosis, with some individuals receiving research-delivered treatments that can stabilize their sight.

Unfortunately, public coverage for comprehensive eye exams differs dependent on where you live in Canada.  This lack of public coverage is compounded by limited vision health coverage in workplace benefits programs. 

New investments in research, treatments and assistive technologies have made significant contributions to the quality of life of those living with vision loss. Advancements, such as cataract surgery, anti-vascular endothelial growth factor (anti-VEGF) injections and specialized software for the visually impaired, have enabled many individuals with vision loss to enjoy daily activities they had previously found difficult or impossible.

Access and investment into new treatments, programs and technology can stabilize sight helping many Canadians today and in the future.

To learn more about the results of the Report and hear perspectives of this data from optometry, ophthalmology and patient advocates, register for Cost of Vision Loss and Blindness Summit on May 26, 2021.

About the Canadian Council of the Blind
About Fighting Blindness Canada

About the Canadian Association of Optometrists
About Canadian Ophthalmological Society

SOURCE Canadian Council of the Blind