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IN THE WORKS AT SAVE YOUR SKIN FOUNDATION
Save Your Skin Foundation is the Secretariat of All.Can Canada, and is a member of the international All.Can group, adding Canadian perspective to this global project. For more information please visit this page to read all about All.Can and the All.Can Canada initiative.
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
Kathy Barnard is on the Steering Committee for SkIN Canada – Skin Investigation Network of Canada. www.skincanada.org
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
MELANOMA PATIENT SURVEY FOR WORLD MENTAL HEALTH DAY
February, 2018: Click here to read the report and view the resulting poster from the Save Your Skin Foundation survey which discusses various aspects of the impact a melanoma diagnosis has on the mental health of patients and their caregivers.
Stay tuned for our continued work in this field.
Stay tuned for our continued work in this field.
COLLECTIVE ONCOLOGY NETWORK FOR EXCHANGE, CANCER CARE INNOVATION, TREATMENT ACCESS AND EDUCATION
In 2015, Save Your Skin Foundation invited a group of leaders in patient advocacy to discuss the need for a network focused on Immuno-oncologies and dedicated to ensuring access to these important therapies for cancer patients in Canada. Since then, CONECTed, a collective of patient advocates, has been dedicated to raising awareness of the needs of cancer patients through a unified and cohesive patient voice and has been involved in addressing issues within the system, at the government level and in HTA both related to immuno-oncology and other therapies. Click here to read more about the work being done by CONECTed
TOGETHER WE CAN MAKE A DIFFERENCE
Making awareness and education available is crucial. Since 2006, the Foundation has worked to raise awareness of melanoma and non-melanoma skin cancers focusing on education, prevention and the need for improved patient care.