The Role and Objectives of Patient Organizations Around the World A presentation by: Mark Krueger,...
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Transcript of The Role and Objectives of Patient Organizations Around the World A presentation by: Mark Krueger,...
The Role and Objectives of Patient Organizations Around
the World
A presentation by:Mark Krueger, MPH
27 March 2010
We are all cancer survivors
• New words are being used to describe what once were cancer “victims”:
• “Cancer survivors” • Advocates say a cancer patient is a “cancer survivor”
from diagnosis for the rest of life• All of us affected by cancer in one way or another -
patients, friends, family, health professionals - are “cancer survivors”
Cancer survivorship movement
Elizabeth Clark, PhDNancy Stovall
• “Empowering” the cancer survivor• The advocacy skill set• Cancer-related advocacy
The informed and engaged patient
The roles of cancer patient groups
Support
Education
Advocacy
Research
What cancer groups are doing
• US chapter-based research and advocacy group for all hematologic cancers • New free booklet “Understanding Drug
Therapy and Managing Side Effects”
• Network of multiple myeloma patient groups in Europe• Support, education and advocacy• Connected to policy makers
• Nationwide cancer support and advocacy organization• “Dress Down Day” for myeloma awareness and fund raising• “Mile for Myeloma” and “Run or Walk for Myeloma UK” public awareness events
Polish leadership is evident
Polish Myeloma Patient Help Association: Setting High Standards
IV CongressIV Congress
Association governanceAssociation governance
Growing Growing membershipmembership
AdvocacyAdvocacy
Connections to Connections to scientists scientists
and researchersand researchers
Cooperation Cooperation between between
board and staffboard and staff
Meeting the challenges of the future
Potential future projects• Use social media (FaceBook, Twitter, etc.) for education• Use Skype to connect with other chapters and groups• Translate existing materials from other organizations (i.e. The
Leukemia & Lymphoma Society, etc.)• Create cancer patient blogs for leukemia, lymphoma and
myeloma• Begin annual “March for Research” event
Changing external environment
Pressures are increasing and affect what cancer groups can and must do:• Increasing number of patients from better screening• Growing use of health technology assessment (HTA)• Decreasing budgets for cancer care and research • Increasing barriers to access to treatment
Choices must be made - cancer groups must speak up
Patients are at the Heart of the Global Movement
You are empowering
Thank you.