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 style
Approach
+
Chemo
prevention
=
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
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!)
Scientists and docs today at
UCSF use - Web tools such as
Web casts, internet,
SharePoint and can share this
learning…
Other
Researchers
Clinicians
Doctors
UCSF
Advocates
“messengers of
a greater
understanding…”
Hope Rugo
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
Patients
Caregivers
others
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