betty ford following her breast cancer surgery 1974
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Betty Ford Following her Breast Cancer surgery
1974
First Lady Betty Ford in 1975 - Can you believe, we are still talking about
early detection almost 30 years later…
Breast Cancer Action 1990s
Breast Cancer Fund Obsessed Campaign
Post-Mastectomy - Betty and I make it look like fun.
BAY AREA ADVOCACY Historically
• Advocates went public with the news that the SF/Bay Area has the highest rate of breast cancer in the world.
• Advocates focused attention on environmental links to breast cancer.
• Advocates highlighted the need for more research funding and different kinds of research.
ADVOCACY AT UCSF• SPORE advocates partner with PIs and investigators
providing advice, critique, and recommendations. • SPORE advocates develop and review educational
materials for patients. • SPORE advocates review grants and trial protocol and
documentation working to support translational research.
• SPORE advocates conduct forums, retreats, and workshops.
• SPORE advocates attend national conferences and advocacy training courses.
Prevention Options…
Strategies for Women at High Risk
Life styleApproach
Chemoprevention
With few identifiable causes and a fraction of women who are genetically predisposed
(3.5% of bc cases) - what is a woman to do?
+ = ?
Task Force recommendations…
FRONT page of the NYT…
Deja Vu…
Confusion and conflict!
How to make news relevant?
IDEAS to Reach Women
1. Work to modernize necessary infrastructure to utilize technology in research and clinical settings to improve patient care - for example, ATHENA.
2. Assist in creating and disseminating information in various mediums to scientists and doctors in/outside of USCF to further learning and facilitate collaboration - work in new ways.
3. Explore tools, such as tweeting, message boards, webcasts, and podcasts, mobile aps, to create various forms of media that can be accessed by patients to be used to educate inform and empower - making information relevant.
Options for relevancy to change the status Quo
• Susan Love’s Army of Women
• Technology usage to educate/empower women– ATHENA– Web casts– Mobile aps– Tweet
Technology Opportunities
UCSF
Other Researchers
CliniciansDoctors Patients
Caregiversothers
Advocates “messengers of a
greater understanding…”
Hope Rugo
Scientists and docs today at UCSF use - Web tools such as
Web casts, internet,SharePoint and can share this
learning…
PATEINT TOUCH POINTS -Mobile symptom diary for clinical application, chat/IM, buddy finder, prevention mobile aps, podcasts,
branching decision treatment plans, Outreach - podcasts, web
sites, FAQs, email
RESEARCHER TOUCH POINTS - SKYPE, databased, podcasts, web
casts/conferences, mobile aps - tweet, FAQ, education-content, message boards, advocate support systems,
prevention outreach/communication - site meetings, conferences, PR,
publishing (does not need to be end all!)
ADVOCATES MAY ASSIST• Help to design infrastructure and
patient points of contact• Facilitate and take part in town
hall, webcasts/sharepoint collaborative tools
• Create content - publish and social media opportunities
•PR
Mobile Breast Health Apps
Mobile App
Mobile App
Breast Cancer Awareness Month
A breast cancer “awareness” stunt in South Africa
awareness with real action = prevention
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