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patient advocacy

6th Annual Patients Redefining the Future of Health Care in Canada Summit

6th Annual Patients Redefining the Future of Health Care in Canada Summit
 
Patients Redefining the Future of Health Care in Canada: COVID-19’s Echo Pandemics — the Way Forward
 
Week of November 15, 2021:
  • November 15 Echo Pandemics in Healthcare
  • November 17  Echo Pandemics in Indigenous Health
  • November 18 Echo Pandemics: The Way Forward
  • November 19  Patient Planning Session

 

Click HERE for more information: Agenda, Speakers, and Recording Links

 

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1 Week Until the Federal Election: Make Healthcare a Priority

Take Action Before September 20

Send your local federal candidates a letter using our easy, automated website. You can customize the message to address issues important to you.  Having local candidates hear directly from patients is very powerful.

The COVID-19 pandemic has pushed our healthcare system beyond its breaking point, as the system provided care to the overwhelming number of COVID-19 patients, while endeavouring to maintain care for all other patients.

Advocating for change has never been simpler and will only take you a few seconds.

Regardless of ability to pay, or where they live, Canadians should not be reliant on “the postal code lottery.” All Canadians deserve to have health care placed at the center of the commitments of our future government.

Contact your candidates now to have your voice heard! Automatically send a letter to your local candidates that you can personalize as much or as little as you want.

Click HERE to encourage Government to Make Healthcare a Priority

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Calling All Non-Melanoma Skin Cancer Patients – Survey 2021

We invite all non-melanoma skin cancer patients having had surgical procedure(s) and/or systemic treatment to take this 10-minute anonymous survey to share their feedback:

The Patient Experience: Surgical and Systemic Treatment of Advanced Basal Cell Carcinoma and Squamous Cell Carcinoma Skin Cancers

Information gathered from this survey will be part of Save Your Skin Foundation’s recommendations to the CADTH Common Drug Review (CDR) and the pan-Canadian Oncology Drug Review (pCODR), and will help us better understand discussions that skin cancer patients have with their surgeons along the treatment continuum.

This survey is now closed.  Thanks to All for their feedback and support.

Stay tuned for the resulting report. 

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#InItTogether Campaign – Melanoma Is Personal

We’ve teamed up with Hayley Wickenheiser again this year to bring awareness to those coping with a melanoma diagnosis.  Summer is here, but if you’re not protecting yourself from the sun, the damage can be far-reaching. Melanoma is one of the top 10 cancers diagnosed in Canada and getting a diagnosis can be scary. Arming yourself with the right information you can literally change the course of your melanoma experience.

Ask about your mutation type. Do your research to find out your options. And know you are not alone in this.

Some Patients, Survivors, and Caregivers from the Save Your Skin Foundation family have come together share their story to inspire education and hope.

“I am newly diagnosed with metastatic malignant melanoma, and I plan to survive it.” – SHERI

“My melanoma came back, but I’m not letting fear in.” – BOB

“I was in end-of-life care when my doctor recommended I take part in a clinical trial.” – MIKE

“Learning that my melanoma was BRAF+ was a huge weight off my shoulders. That knowledge shaped my path through the disease.” – COLIN

“Melanoma research literally saved my life. Today I’m surrounded with the support of the melanoma community and I know they have my back.” – NATALIE

Check out this article in Elle magazine, dedicated to Canadians who have their own personal melanoma stories: 

ELLE Canada – Summer is Back ~ Do you know what you need to know about melanoma?

Check out these “Melanoma is Personal” videos on YouTube   And click here to see more clips on the SYSF youTube channel

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SYSF Endorses the Declaration of Personal Health Data Rights in Canada

SYSF is pleased to announce that it has endorsed an important new initiative, aimed at advocating for the personal health data rights of Canadians. 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 Declaration of Personal Health Data Rights in Canada is intended 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.

The working group undertook a brief review of the current landscape related to personal health data. Various drafts were revised with feedback from a range of health data custodian perspectives, but with a major focus on the perspectives of patients, caregivers, citizen groups and patient group such as SYSF. Since the Declaration’s launch in June 2021, it has been endorsed by 27 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 Declaration is available in two formats. To read or download the full Declaration, click here. To read the Executive Summary of the Declaration, click here.

 

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SYSF Around the World

“SYSF works hard to bring resources from around the world to give Canadian skin cancer patients the latest information on treatment options and disease management.

This year our May campaigns have gone around the globe – from our long-standing participation in the Global Coalition for Melanoma Patient Advocacy with the Melanoma Research Foundation to the Melanoma International Patient Advocates Coalition with AIM at Melanoma to Ocumel Canada’s partnership with the US, the UK, Ireland and Australia, all the way home to the NCCN Guidelines created in the US but used by our own Health Care Providers in Canada.

We hope you enjoy these resources and welcome questions or feedback any time.”

Natalie Richardson, Managing Director, SYSF

We are very pleased to congratulate the National Comprehensive Cancer Network on the release of a new valuable patient/caregiver resource! Save Your Skin Foundation is proud to have provided endorsement for the Guide and have our Managing Director Natalie featured on the cover!

The new NCCN Guidelines for Patients® on Melanoma provides an extremely comprehensive and informational reference for patients covering melanoma basics, testing, staging, treatment and recurrence. 

Click HERE to view and download the Guidelines

 

In collaboration with the Global Coalition for Melanoma Patient Advocacy, hosted by the Melanoma Research Foundation in the United States, Save Your Skin Foundation participated in the making of this skin check awareness video for Melanoma Awareness Month 2021, featuring melanoma patients and caregivers from across the globe demonstrating that the time it takes to do a skin self-exam is the same as that of drinking a cup of coffee. Check it out:

Need help performing a self skin check? Click here for a video tutorial!

 

Also:

Save Your Skin Foundation is a proud member of MI-PAC, a coalition of organizations across the globe committed to reducing the global melanoma burden through education, advocacy, and collaboration. MIPAC, hosted by AIM at Melanoma in the United States, works to increase awareness and change public perceptions of melanoma, empower melanoma patients to take an active role in their care, and effect change in regulatory policies to optimize treatment and care.

Watch for our upcoming patient stories and continued awareness initiatives right here at home in Canada!  For more information or support please contact us at kathy@saveyourskin.ca / 1.800.460.5832

 

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17 BC Municipalities Proclaim May Melanoma Awareness Month

As May marks both Melanoma Awareness Month and the beginning of summer weather, it is imperative that communities across Canada be reminded of the importance of sun safety at this time of year. The COVID-19 pandemic has forced many Canadians to stay home, but that doesn’t mean they aren’t spending time outside. In fact, many have more time than usual to enjoy the outdoors, making sun safety education as relevant as ever.

“COVID-19 has highlighted everyone’s willingness to take drastic measures to preserve our health,” says Kathy Barnard, stage 4 melanoma survivor and Founder of Save Your Skin Foundation (SYSF). “Increased preventative efforts and methods of early detection, particularly in the form of public education, public policy and built environments are also needed to reduce skin cancer rates.”

Skin Cancer in Canada is still on the rise

COVID-19 isn’t the only disease whose rates can be drastically reduced through education and preventative measures. Skin cancer rates in Canada continue to rise, including melanoma, and non-melanoma skin cancers, despite being 90% preventable.

Skin cancer is the most common of all cancers. There are more new cases of skin cancer each year than the number of breast, prostate, lung and colon cancers COMBINED[1]. While most forms of non-melanoma skin cancer can be surgically removed, melanoma is an aggressive form of cancer. The five-year relative survival rate of melanoma that has metastasized is just 18%.[2]

Despite these figures, many people seek sun without taking the recommended precautionary measures, or believe that only severe burns contribute to one’s risk of skin cancer. In fact, any darkening of the skin, including a tan, is indicative of UV damage.

 

Municipal Proclamations

To increase the reach of SYSF’s awareness campaign this year, a new proclamation initiative invited BC municipalities to take a stance against skin cancer and educate their communities on sun safety through mayoral proclamations.  SYSF is pleased to announce that seventeen BC municipalities, listed below, have accepted SYSF’s invitation to proclaim the month of May 2020 ‘Melanoma Awareness Month’.  Click here to read our full press release.

City of Vancouver

City of Kelowna

City of Victoria

Town of Comox

City of Burnaby 

District of Saanich

City of Richmond

District of Central Saanich

City of New Westminster

City of Prince George

City of Surrey

City of Williams Lake

City of Whistler

District of Mission

City of Nanaimo

City of Langford

City of Campbell River 

 

Mayor of New Westminster, Jonathan Coté, was first to commit to proclaiming May 2020 as Melanoma Awareness Month, and decided to challenge other BC municipalities to follow his example. “Skin cancer is largely preventable, and yet there are more cases now than ever,” said Coté.  “This is why as Mayor of New Westminster, I’m happy to support this important initiative and challenge all BC municipalities to do the same.”

“This is an important initiative, especially for hot, sunny communities like ours,” said Mayor of Kelowna, Colin Basran. “Skin cancer is a serious public health concern, and incidences of the disease are only increasing.”

 

During Melanoma Awareness Month, we invite you to take action by publicly announcing your support of the fight against melanoma.

 

Throughout the month of May, SYSF will be engaged in several initiatives to bring awareness to melanoma, non-melanoma skin cancers, and ocular melanoma. The month will be starting out with a bang thanks to a new drawing contest aimed at youth. The contest’s theme “This is what sun safety looks like”, will encourage participants to submit drawings depicting actions or environments which help prevent skin cancer. The winning entry will be determined through open voting once the May 15th deadline for submission has passed, with a $100 gift card going to the artist with the most votes.

 

Download our custom banner photo for your Facebook cover photo below, or upload a selfie below to participate in our #WeWillDefeatMelanoma campaign! We will apply our campaign frame to your selfie and post it on our social media channels.

 

 

 

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Melanoma Awareness Month – May 2019

May is Melanoma Awareness Month

May is Melanoma Awareness Month and it’s the perfect time of year to review a few easy steps we can all take to Be Sun Safe!

Spread Awareness

Join us in spreading the word about Melanoma Month by using one of our facebook banners as your cover photo! They are available for download HERE:

Sun Safety

Help us share the message about Sun Safety! Download our Sun Safety infographics by clicking on the images below and share with your friends and family!

      

Examine Your Skin

Learn how to perform a monthly skin self-exam!  When caught early, skin cancer is very treatable.

Patient Support

For those living with melanoma, support can be vital to the healing process. Save Your Skin Foundation provides a collection of resources as well as several ways for patients to connect with others or with private support. If you know someone touched by melanoma, please help them to connect with us.

We provide one-on-one support through Founder Kathy Barnard. We also provide support from other patients and survivors through our initiative “I’m Living Proof”

Click HERE for a summary of the ways you can connect with other patients, survivors, and caregivers touched by melanoma and non-melanoma skin cancers, and ocular melanoma.

Press Release

If you’re interested in what Save Your Skin is working on for Melanoma Awareness Month, check out our official press release, which includes vital information about melanoma rates in Canada, prevention and detection, and how to support those battling skin cancer.

Public Service Announcement

Click here to watch our new video cut about sun safety and skin cancer awareness:

 

 

Stay tuned for more updates throughout May – Melanoma Awareness Month!

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Introducing: Ocumel Canada

For the past year, Save Your Skin Foundation has been working with ocular melanoma (OM) survivor and advocate Nigel Deacon, to improve OM patient care across the country. Together we created a survey and resulting report in order to gain insight into the Canadian OM patient journey, and we have connected with innovative OM treatment researchers as well as explored testing options in Canada for ocular melanoma, also known as uveal melanoma. Additionally, we have partnered with OM patient support groups around the world, such as Cure OM (an initiative of the Melanoma Research Foundation, United States), and Ocumel Ireland and Ocumel UK.

We are inspired by the work being done by these groups, and by the feedback we receive from patients who need better support in their diagnoses of primary and/or metastatic ocular melanoma, to work toward better and more standardized care in all provinces in Canada. We have identified gaps in OM patient care which can vary from centre to centre, and we recognize the need to advocate for patients to receive treatment for their disease, especially when it is metastatic.

In order to continue this work and raise awareness for this rare disease and the patients who need support to handle it, we have created a dedicated initiative called Ocumel Canada, which will serve as our platform for increasing education and community around the topic.

Ocumel Canada strives to do the following:

  • Advocate for early detection of ocular melanoma
  • Enable access to early treatment of primary ocular melanoma
  • Work towards a consistent approach to treatment of metastatic ocular melanoma
  • Support patients who have been diagnosed with primary or metastatic ocular melanoma
  • Build a network of support for patients and caregivers

 

Ocumel Canada will work with health care providers and HTA decision-makers across Canada to improve ocular melanoma patient outcomes. We applaud the work being done at the two busiest centres for referrals, and we wish to help extend treatment options to patients in remote areas and to provinces who do not currently participate in the same practices available to OM patients in areas such as Toronto, Ontario. Advocacy for increased patient access to clinical trials, even if in other countries, is also an aim for Ocumel Canada.

Today we begin with a new hope for Canadians diagnosed with ocular melanoma.

Click here to read the press release: Launch of OCUMEL CANADA Offers New Hope for Canadians Diagnosed with Rare Ocular Melanoma

Stay tuned for updates on our progress!  And tune in Friday February 15, 2019 to our webinar Ocular Melanoma: Innovative Treatments and Beyond, with Dr. Butler of Princess Margaret Cancer Centre, and Dr. Hamid from The Angeles Clinic and Research Institute, in Los Angeles, California, U.S. This webinar will provide an update on the landscape of metastatic ocular melanoma treatment in Canada and the United States. Dr. Hamid and Dr. Butler will share their knowledge of current practices and care pathways, identifying the most pressing needs for patients.  They will also discuss innovative treatment options such as IMCgp100, as well as clinical trials available to Canadian patients with ocular or uveal melanoma. Nigel Deacon will share his experience with this rare cancer; Kathy Barnard will facilitate the discussion.

For more information about ocular melanoma and the Ocumel Canada initiative, please feel free to explore the information we have put together for our website at www.ocumelcanada.ca , email ocumelcanada@saveyourskin.ca, or call us at 1-800-460-5832. 

We have created the following pages to provide up-to-date links and resources:

Ocumel Canada – About Ocular Melanoma

Ocumel Canada – Helpful Links

Ocumel Canada – Resources and Support

Ocumel Canada – 2018/2019 Strategic Plan

https://www.instagram.com/p/BsqaD2xgyf6/

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Adjuvant Patient Survey: here is the full report!

In September 2018, Save Your Skin Foundation (SYSF) conducted an anonymous survey of melanoma patients in the adjuvant setting (diagnosed at a stage lesser than stage IV).  This survey, titled “Melanoma Treatments in the Adjuvant Setting,” was open globally, and we received responses from all over Canada as well as from the United States, New Zealand, and Australia.

The survey consisted of 28 questions, which ranged between multiple choice, multi-selection, and write-in, and participants had the option to skip any question. The goal of the survey was to assess the impact melanoma has on patients and their families and caregivers, and get a picture of the treatment plan of the average melanoma patient, what treatment access limitations they have encountered, and what they look for in potential treatment options.

The responses to this survey were used to inform SYSF submissions to provide direct patient feedback as treatment recommendations to pCODR and INESSS.  We provided these submissions with all of the patient comments to support the message that melanoma patients in the adjuvant setting need access to immuno-oncology treatments to prevent their disease from growing into a stage IV diagnosis.

Thank you to all participants who took the time and care to share their perspectives.  We have every hope that the drugs in the pipeline for adjuvant will be approved in every province and territory in Canada.

To read the full Survey Report, please click HERE To request any additional information about the survey please feel free to email info@saveyourskin.ca

 

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