What We’re Working On

GOVERNMENT RELATIONS

Save Your Skin Foundation has developed an established government relations approach that includes open communication and consultation between policy makers and leaders within the Foundation. We contribute to policy discussions and work towards consistent and effective implementation of procedures and protocols that put the patient first.  Click here to read more on our page “Health Policy Resources”.

INTERNATIONAL ADVOCACY FOR PATIENT ACCESS TO TREATMENT

Advocates across the world are working with those who make decisions about healthcare to ensure that the patients they serve have access to appropriate care.  Kathy Barnard of Save Your Skin in Canada knows first-hand how access can transform a patient’s chances. With Canada’s fragmented healthcare system, Kathy has been spearheading submissions to the assessment authorities and believes the next step is to work internationally to share learnings, approaches and evidence globally.

Kathy and Save Your Skin Foundation are proud members of several international initiatives:

Global Coalition for Melanoma Patient Advocacy, with the Melanoma Research Foundation: www.globalmelanoma.org

MI-PAC – Melanoma International Patient Advocates Coalition, with AIM at Melanoma: www.aimatmelanoma.org/our-global-influence

Also in collaboration with AIM at Melanoma we develop patient and health care provider resources relevant to the Canadian population. Click here to view booklets on immuno-oncology and targeted therapy treatments as well as a decision-tree guide for adjuvant melanoma patients:  www.aimwithimmunotherapy.org/canada  

GOAL – Global Oncology Advocacy Leaders: Click here to read and download the booklet and resources A³ ~ ADVOCACY: ACCESS IN ACTION

Patient advocates have an important role to play here as they are aware of and can express many viewpoints of the patients they represent. In this paper, a group of patient advocates representing many thousands of patients from around the world explore the following:

• The varying definitions of patient value
• Value from the patient perspective
• Why and how decision‐makers should incorporate patient value in frameworks and guidelines
• How the advocacy community can work together to ensure that the concept of patient value is included in current and future value frameworks.

Please click here to read the full paper titled Patient Value: Perspectives from the advocacy community

SKIN CANADA

Kathy Barnard is on the Steering Committee for SkIN Canada – Skin Investigation Network of Canada.  www.skincanada.org

SUNFIT PROJECT

SYSF will support and participate in the upcoming project led by Dr. Ivan Litvinov entitled “SunFit Project: Skin cancer prevention through behavioral risk factor modification targeting sun and ultraviolet exposure practices using sex/gender and community-specific approaches.”

Sun exposure/ultraviolet radiation remains a critical driving force the promotes melanoma development.  McGill University scientists are working to better understand how different risk factors affect skin melanoma in various Canadian communities. The researchers want to better understand Canadians’ knowledge of skin melanoma, other skin cancers, as well as their beliefs and behaviors pertaining to sun safety practices. Stay tuned for more information as SunFit Project develops!

In the meantime, if you are willing to contribute to the Canadian knowledge on melanoma, please follow the link below to complete a survey containing questions asking about your baseline knowledge and risk factors for skin cancer, as well as your beliefs and behaviours with regard to sun safety practices. The survey is available online and will take 5 to 10 minutes to complete.  To complete the survey, visit this secure link: https://portal.rimuhc.ca/cim/redcap/surveys/?s=MHH8PJ7CC9