day 1 cbcn training
TRANSCRIPT
The National Network and Voice of Breast Cancer Survivors and Patients
The Canadian Breast Cancer Network
The Canadian Breast Cancer Network (CBCN) is Canada's leading survivor-directed, national network of organizations and individuals concerned about breast cancer. CBCN strives to voice the views and concerns of Canadians affected by breast cancer through promotion of information sharing, education and advocacy activities.
Vision & Mission
VisionThe best quality of life for all Canadians affected by breast cancer
Mission •National Network - Links and supports groups and individuals to promote information exchange and collaboration•Educate and Inform - Provides credible breast cancer related information and education to those affected by breast cancer•Advocacy - Promotes equitable access to support and care throughout the breast cancer experience to ensure best quality of life. CBCN also ensures that the issues affecting breast cancer survivors and their families inform health care policy and guide research.
National, regional and local Cancer
Organizations and Patient Groups
Canadian Breast Cancer
Network (CBCN)
Canadian Breast Cancer
Network (CBCN)
CBCN’s National Network
Community Health
Organizations
Industry(Pharma)
Physicians and Researchers
Patient Groups (Non-Cancer)
Professional Organizations
Federal Government
Provincial Governments &
Provincial CancerCare
Breast Cancer Survivors and
PatientsCommunity
Breast Cancer Organizations & Support Groups
Provincial & Territorial Breast
Cancer Organizations
National Breast Cancer
Organizations
Education & Information
• CBCN’s website www.cbcn.ca • Online Webinars• Educational Retreats and
Conferences for patients and survivors
• Published Educational Resources: – “Never Too Young: Psychosocial
Information and Support for Young Women Diagnosed with Breast Cancer” (Handbook)
– “Intimacy and Sexuality After Breast Cancer” training manual for workshop facilitation
– “Network News” a semi-annual magazine
– “Outreach” a monthly e-newsletter
CBCN’s Advocacy
• Through CBCN’s advocacy program we connect with decision makers to help raise awareness around the needs of those affected by breast cancer that will inform policies that will improve the quality of life for patients and survivors.
• CBCN holds in-person advocacy training days to provide patients & survivors with the tools and opportunities to share their experience with decision makers and advocate for change.
• CBCN connects with other patient groups and partner organizations to collaborate on similar advocacy issues
• Engage media to raise awareness around priority advocacy issues.
CBCN’s Priority Advocacy Issues 2014
1.Metastatic Breast Cancer – awareness around the unique needs of women with metastatic breast cancer and timely access to new drugs2.The extension of EI sickness benefits from 15 weeks
CBCN’s Advocacy
• Research reports published by CBCN help raise awareness around priority issues, there reports include:• Metastatic Breast Cancer in Canada:
The lived experience of patients and caregivers (2013) in collaboration with Rethink Breast Cancer
• Women with Disabilities and Breast Cancer Screening (2013) in collaboration with the DisAbled Women’s Network of Canada
• Economic Impact of Breast Cancer and Labour Force Re-Entry (2010)
• Breast Cancer Wait Times Report (2008)
• Nothing Fit Me: The Information and Support Needs of Young Women with Breast Cancer Report (2003)
• Perspectives of Rural Women with Breast Cancer (2001)
Priority Populations
Underserved populations:•Women with Metastatic Breast Cancer•Aboriginal, First Nations and Inuit women•Women with disabilities•Women with mental health issues•Women in rural and remote areas of Canada•Immigrant women
Breast cancer survivors and patients
Advocacy With Impact: Advocacy Overview
What is Advocacy?
Newton’s First Law of Motion:“An object at rest tends to stay at rest and an object in motion tends to stay in motion with the same speed and in the same direction unless an external force is applied to it.
Who is an Advocate ?
• Anyone with a story to tell and constructive ideas for change
• Decision-makers respond most to credible, sincere, organized groups who effectively bring their issues to the forefront
How Does Advocacy Work?
• It’s about building relationships-with government and other stakeholders
• Its is a set of strategic, targeted actions directed at decision-makers to achieve change
• Can involve a series of specific short-term activities to incrementally achieve a long-term vision.
What is
Planning for Advocacy
• The Problem: What is your issue? What do you want to see changed? Why does it concern you?
• The Solution: What needs to happen?
• The Outcome: What are the changes that will result? When asking for a change, keep your request or “ask” to just one. This will help you to focus on the thing that you need the most and
not a list of things that you would like to have.
• The Targets: Who do you need to talk to? Who has the authority to make the change? (the hospital? The Minister of Health? Insurance
company?)
• The Approach: How will you explain your issue? What can you do to deliver your message? (a letter? A meeting? Both?)
Planning for Advocacy
• Be prepared: Develop your key
messages Create your advocacy
tools Focus on one main
request-your key “ask”• Get organized.• Get into action.• Monitor your
progress.• Follow-up.
Building Relationships
Meeting with Government: Face-to-face meetings are a highly effective way to
communicate with government Schedule meetings with both elected government
officials as well as political and pubic service staff Contact information for government representatives
and staff can usually be found online Identify your personal and professional contacts who
may have established relationships with the people you need to see and who can make an invitation
Meetings
• Ask partners with complimentary advocacy objectives to meet with government representatives on your issue
• Look for credible influential allies• The more people the issue is shown to be
affecting the more likely the government will pay attention
Meeting with Elected Representatives
• Contact the official’s scheduler to request a time to meet
Be flexible in determining a date and time to meet• If possible bring a constituent from the MPP’s
riding to the meeting• Do your homework and prepare thoroughly for
the meeting Stay on message Identify where your ask fits within the government agenda
• Prepare brief information articulating your position to leave behind after the meeting
• Tell the human side of the story
What to Expect in an Advocacy Meeting
• Introductions/Setting the Stage (5-10 min)• Personalize the Issue (5-10 min)• Making a Request (1-2 min)• Discuss/Explore Possibilities (8-10 min)• Confirm Next Steps (1-2 min)
Other Tactics
• Petitions• Marches/rallies• Report cards• Policy papers• Speeches • Seminars/symposia• Political fundraisers• Media engagement
Advocacy at CBCN
Our Approach:• Non-partisan• Non-ideological• Efficient• Results oriented• Evidence based• Cooperative• Specific• Ethical
Advocacy at CBCN
• Drug Access Catastrophic Pharmacare
• EI Sickness Benefits• Metastatic Breast Cancer
CBCN Metastatic Breast Cancer Campaign
• Focus around raising awareness about the unique and distinct needs of Canadians affected by metastatic breast cancer
• Main focus for the campaign:⁻ Increased awareness and understanding of metastatic
breast cancer and the experience of Canadians living with this stage of the disease
⁻ Improved health services to meet the needs of Canadians living with metastatic breast cancer
⁻ Equitable and timely drug access to new treatments for metastatic breast cancer
⁻ Increased investments in research to improve outcomes for Canadians living with metastatic breast cancer
⁻ Improved surveillance and statistical data of metastatic breast cancer in Canada
CBCN Metastatic Breast Cancer Campaign
• CBCN calling for parliamentary motion to recognize October 13th as national metastatic awareness day
• Individual navigation and drug access campaigns across Canada
• Outreach to health professionals to increase knowledge, awareness and understanding
• Increased education, information and resources
• Mobilizing to create a united voice and community for Canadians living with metastatic breast cancer.
Questions?
Advocacy With Impact: Inside Government
Government Jurisdictions in health
Federal Government:• Provides funds to support health care
delivery in the provinces and territories and direct delivery of care to certain groups (First Nations, military personnel etc).
• Health Education • Health protection• Health Funding• Health related tax measures
Government Jurisdictions
Provincial and territorial health care:•Responsible for administering Medicare free of charge. •Implementing and evaluating hospital care, physician care, allied health care, prescription drug care in hospitals and public health•Negotiating fee schedules for health professionals.
Is Your Issue a Federal/Provincial/Local Responsibility?
This will determine who/what level of government you are targeting in your advocacy plans.•Approval of new medications (federal)•Drug reimbursement (provincial)•Health programs (provincial)•Employment Insurance(federal)• Support programs (provincial/federal)
Key Components of Government
Key Components of Government
• Central Agencies: Cabinet Office, Finance and Treasury Board and Secretariat
• Line Ministries: Eg, Health and Long term Care, Education, Natural Resources
• Cabinet Committees: Eg, Health and Social Services Policy Committees
• Legislature: Legislative Assembly and its committees
Drug Approval Process in Canada
New Metastatic Breast Cancer Drugs
• Numerous new treatments emerging for treatment of metastatic breast cancerName Indication Manufacturer Status
Afinitor HR+,HER2- Novartis AB/BC/NB/NS/ON/YK/QC/SK
Tykerb HER2+ GSK AB/BC/NB/NS/ON/QC/SK/YK
Perjeta HER2+ Hoffman-LaRoche ON/BC/SK/AB/MB
Kadcyla HER2+ Hoffman-LaRoche SK
Palbociclib ER+,HER2- Pfizer Experimental stage
LEE011 ER+,HER2- Novartis Experimental stage
Bemaciclib ER+,HER2- Eli Lilly Experimental stage
Policy Process Today• Policy platform process• Speech from the Throne• Budgets• Policy papers/consultations• Standing Committees• Bills/Motions to Parliament• Question Period• Representation by lobby
groups/companies/associations/individuals• Media play
Advocacy With Impact: Defining Your Ask
Defining Your Ask
A few things to consider:1.Identify the problem2.What are the barriers to solving the problem?3.What policy changes are needed to address the problem?4.What resources are needed? (ie. funding)
Advocacy “asks” should be: SMART
SpecificMeasurableAchievableRealisticTime-bound
Defining your ask
Advocacy With Impact: Media and Your Messages
The Power of the Media
• Media is a conduit to have your voice heard• Media tend to cover stories with a human interest angle (i.e. a patient or
a caregivers personal perspective)• Media coverage gets the attention of decision-makers
May compel them to do (or not do) something• The media is a powerful tool that, if utilized properly, can result in the
ability to affect change.• Everyone listens to the news• It’s important to learn how news media works in order to exert some
form of control, or initiate some form of action around an issue that matters to you.
Speaking to the Right Person
• Before reaching out to a media outlet…Follow reporters to determine/understand their interestsFind out which reporter(if any) has been affected by the issue
personally
• When reaching out to media, understand thatAssignment editors are responsible for assigning stories to
journalistsNews editors are responsible for what gets publishedHealth reporters are responsible for researching and developing
stories
Using Media for Advocacy
• Define your audience• Set goals and objectives for your media efforts• Select the best approach:
News/press releases Press conferences Letters to the editor Guest editorials Meetings with editorial boards Public forums or events
• Develop personal contacts
Letters to the Editor
•Be brief•Establish a ‘hook’•Skip the form letters•Give your address and phone number
Op-Eds
•500-800 words max•Avoid acronyms, and jargon•Avoid rhetoric and use facts and statistics to back up your assertions.•Add stories for interest
Advocacy and the Breast Cancer Movement
Issues at play in the breast cancer arena:•Access to new treatments•Funding for breast cancer research•Health system reform•Availability of support for those fighting breast cancer•Economic Impact of breast cancer
Key Players in Canada
• National Organizations:– Canadian Breast Cancer Network:
Focus on all breast cancer survivors and patients providing information, networking and advocacy
– Canadian Breast Cancer Foundation:Focus on research/CIBC Run for the Cure
– Breast Cancer Society of CanadaFocus on research funding for diagnosis, treatment and prevention
– Willow Breast Cancer Support:Focus on information and support services
– Rethink Breast CancerFocus on young women
March 9th, 2011
March 18th, 2011
May 12th, 2011
Advocacy Through Media
Advocacy Through Media
There is a big difference between knowing your subject, and knowing
your message.
What is a Key Message?
• A simple, compelling, enduring perception that influences stakeholders and enhances your objectives.
• What you want the media to report• Short, memorable information points about your
topic• Descriptive, vivid• Delivered with personality• Succinct, quotable• Newsworthy, credible and in context
The Value of Key Messages
• Allow members of an organization to speak from the same page
• Allows you to stay focused in your meetings/communications with government/media
• Provides a solid base from which to bridge effectively on other issues
• Demonstrate leadership since you will be articulate, consistent and supported by evidence
Developing Key Messages1. What-Identify your issue•Focus on the things that you are concerned about and want to see changed.•Take a position or stand.
2. Why - Explain the issue•Write out three key messages that explain your issue and your concerns in clear language.•Your key messages must be brief, easy to remember ,simple, true and provable.•Rehearse your key messages, as they will form the basis for all written and verbal communication with decision-makers, other advocates and the media.
Developing Key Messages
3. Who-Deliver your message to the right people•Your issue will determine who to target-either government or media
4. When- Deliver your message at the right time•A prime time to deliver your message is when the issue appears in the media•Also when decision-making authorities change•Election periods good way to secure commitments from candidates
Establishing an Interview
1. Are you on deadline? What is your deadline?2. What are you looking for from me/us?3. Who else have you talked to?4. Is there a news event driving this?5. Is there another time to speak?6. What’s the best time to reach you7. When do you hope this will appear?8. Why don’t you ask me…?9. What are you taking away from this?10.Where will this appear?
Interview Guidelines Keep it short Answer the question and then stop Use your message wisely, not too well You don’t need to have all the answers Respond don’t react to questions Get to the point Avoid filler words Tell the truth Nothing is off the record Give positive answers to negative questions Avoid “no comment” answers
The Unprepared Interviewer:May have vague questions or require you to provide a lot of background before you can get to your key message.
Reporter Interview Techniques
The Response:Steer the interview in the direction you want to go. Rephrase the question to make it more specific. "By your question, I think you’re referring to...let me put that in perspective."
The Machine Gunner. Asks so many questions that you don’t know which one to answer first.
Reporter Interview Techniques
The Response:“You’ve asked many interesting questions. First I’d like to address, …”
The InterrupterJumps in before you’ve had a chance to complete your response.
Reporter Interview Techniques
The Response:Let him complete the interruption, then say: "Before I answer that, I’d like to complete my thought."
The Paraphraser:Tries to put words in your mouthMay ask hypothetical questionsOften inaccurate in conclusions
Reporter Interview Techniques
The Response:“No, that isn’t what I said. What I said was..." and repeat your point.
The Expert:Usually well-informedKnowledgeable and respectfulAsks well conceived questionsUsually a pleasant interview
Reporter Interview Techniques
The “Either/Or” questionThe “Negative” questionThe “Absent Party” questionThe “Ambush”The “False Statement”The “Hypothetical”
Question Traps
Media Lessons
Sarah Palin Talks Bailout Proposal.flv
14 year old girl picks fight with bully TV host - and WINS_.flv
Media Lessons
You DO have the right to:•Know the topic, participants and format•Know if the interview will be live/taped•Know if the interview will be edited or used in its entirety•Expect fairness
Media Techniques
You do NOT have the right to:•Know the questions in advance•See story in advance•Change your quotes or edit the story•Expect your view to be the only presented
Social Media 101
The Fundamentals ofFacebook and Twitter
What is Facebook?A social networking website that allows users to connect with others by sharing photos, videos, messages and keeps you in touch with friends and family
Facebook Terminology
• News Feed• Status Update• Wall• Tagging• Share• Like
News Feed
The news feed is your Facebook home page, and the first thing you see when you sign on to Facebook. It gives you regular updates from the friends you follow and connect with.
Status Update
Allows users to quickly update their friends on their lives or share news and information. People can attach pictures, videos and links and tag their friends in their updates.
Facebook Wall
A space on a user’s profile that allows their friends to post information.
It is different from a private message in that allows all of your friends to see the message. A private message is solely between certain individuals and is not made public to the rest of your friends.
Tagging
A tag can be attached to any update that you post, whether it be a simple status update or a photo you have posted. It links a person, a page, or a place (Geotagging, or “Checking in”) to your update.
ShareFacebook allows people to share content that others have previously posted. If someone posts information that you think is relevant to the rest of your friends or followers, you are able to share this post with them.
Like
All updates have a “like” button attached allowing you to easily notify the author that you enjoyed their post.
What is a Facebook Page?A public profile that allows people or businesses to promote a specific product or cause and interact with its fans/customers.
Why create a Page?
• It’s public!• Helps keep your private life private!• Facebook Insights• Newsfeed Marketing
What is Twitter?
A social networking site that allows its users to share short messages (called ‘Tweets’) in 140 characters or less
Twitter Terminology
• Followers vs. Following• Hashtags– Ex. #BreastCancer, #bcsm
• @Mentions vs. @Replies• Retweet• Notifications Page• Discovery Page
Followers vs. Following
A follower is a user who subscribes to your tweets.
Following refers to the users you subscribe to.
*Typically a user wants to have a higher number of followers compared to the number of users they are following.
Hashtags
Used with the # prefix, a hashtag is used to group topics.
It has become a popular means of campaigning and spreading awareness on certain topics and causes.
@Mentions vs. @Replies
A Mention is a tweet that incorporates another twitter user into the body of your tweet.
Replies are used in response to tweets. By clicking on the “reply” button underneath a tweet you are able to directly comment and contribute to the conversation. The user’s @username will be included at the very start of the tweet.
Retweet
Retweet: A re-posting of someone else’s tweet.
Notification Page
Monitors all activity associated with your twitter account. It tracks who has recently followed, mentioned, or retweeted you.
Discovery Page
A filtered News Feed that expands tweets to include the graphic or summary of an article that is posted.
It is tailored to you and is based on your followers and content that you tweet about.
Why use Twitter?• Micro-blogging• Networking• Hashtags• *Twitter is live!
Find CBCN on Social Media!
You can connect with CBCN by following us on:
@cbcn Canadian Breast Cancer Network @cbcnetwork Canadian Breast
Cancer Network
Advocacy With Impact: Social Media and Advocacy
Why Use Social Media for Advocacy?
Advantages of social media include:•Low/No cost for set-up•Potential wide reach•Quick/instantaneous response and sharing of messages•New opportunities to listen, engage and monitor your progress.
Value of Social Media Advocacy
• To spread the word• To mobilize forces• To manage event registrations• To raise funds• To network with like minded groups• To take action• To engage and convene discussion
How to Use Social Media
1. Create a brief strategic review2. Sign up for social media accounts3. Become familiar with the tools4. Develop systems for managing your
advocacy efforts5. Monitor your efforts and tweak as
needed
Social Media Tactics
• Online petitions• Facebook pages• Blog posts/guest blogging• Following experts/authorities• Hosting twitter parties• Using hashtags• Outreach to decision-makers/reporters• Calls to action
Social Media Exercise• Share your personal journey Facebook/Blog• Quickly voice your thoughts/opinions on a specific issue Twitter/Facebook• Coordinating an event Facebook• Promoting/Marketing an event Facebook/Twitter• Creating discussion around an issue Facebook/Blog• Quickly mobilizing for action Twitter/FB• Disseminating information quickly Twitter/FB/Blog
Discussion ReviewTrue/False
True or False?
Only those with the appropriate training and skills can do advocacy work?
True or False?
Advocacy is about building relationships?
True or False?
Provincial governments are responsible for drug reimbursements
True or False?
Only those with the appropriate training and skills can do advocacy work?
True or False?
The only decision-makers worth speaking to are those currently in government.
True or False?
You need to be on every single social networking site.
True or False?
Too many Facebook posts can have a negative effect on your followers
True or False?
You can’t expect fairness from the media.