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

The world wants to hear your voice, be an active part of the World Blindness Summit!

Four days in which blind and visually impaired people will talk about technology, education, employment, development, challenges, opportunities, future, sustainability, inclusion, reconstruction… and where great experts from around the world will be present … but participants will be the real protagonists! 

 Tell us a little bit about yourself and what you expect from this summit. Send us a 30 second video in English, French or Spanish and we will share it, on our social media and during the World Blindness Summit. 

We would have loved for all of us to meet in Madrid… but since it is not possible, let’s use the technology we have to put voice and face together. 

Remember that by sending us the videos you are authorising the Organización Nacional de Ciegos Españoles ( ONCE) (Spanish national organisation of the blind) to use them in their media and communication channels in order to improve the image of people with disabilities around the world, and in connection with the World Blindness Summit Madrid 2021.  It may be used in as many media as deemed appropriate without any time or geographical limitation. 

Send your video to [email protected] / +34 600 53 94 07

Approval of Luxturna Needs You

The words Approve Luxturna on a white banner over a blue and white picture of a labratory.

These are amazing times … a gene therapy can restore sight.

And now you can help to restore sight for someone going blind. Here is how…

42 Canadians are counting on you. Their blindness is caused because their RPE65 gene is not functioning, and they are losing approximately 10,000 precious light sensing eye cells a day.

And time is growing short for these Canadians. It is taking 18 to 24 months for the drug approval process to slowly figure out if they will public fund Luxturna in your province. Some of these Canadians may not have enough light sensing eye cells left by the time a decision is made.

Please add your voice by sending an email to your Premier. We must accelerate the negotiations for public health care to fund Luxturna. We must set the precedent for future vision treatments that they will be funded too.

Health Canada approved Luxturna as a treatment in Canada in October 2020. A few weeks later, the Canadian Agency for Drugs and Technologies in Health (CADTH) and in Quebec, l’Institut national d’excellence en santé et en services sociaux (INESSS) recommended Luxturna for public health care funding.

The next step is the pan-Canadian Pharmaceutical Alliance (pCPA) to negotiate a deal on Luxturna. pCPA is an alliance of the provincial, territorial and federal governments that negotiates these deals that lead the way to public health care funding of a treatment.

BUT pCPA has not started the Luxturna negotiations for over 5 months.

Time = Sight!

We just can’t let a bureaucratic process mean someone goes blind when a treatment is available. We’ve waited too long for this first treatment. We need to encourage more treatments to reach Canadians by setting the precedent with Luxturna that all treatments can be funded by public health care.

That’s why we launched our latest “Approve Luxturna” Advocacy Campaign.

We are asking all of our supporters to send an email to the Premier, local representatives and the pCPA and demand action now.

Please take one minute and add your name here: