1. “A European network on cervical cancer surveillance and control in the new Member States - AURORA” 3 rd Module: Advocacy and Lobby

2. www.aurora-project.eu This publication arises from the project «AURORA» which has received funding from the European Union in the Framework of the Health Programme. Partner

3. 1.What is advocacy 2.What is an advocacy campaign? 3.How to frame an Advocacy Issue? 4.Advocacy Campaign’s goals 5.Who Advocate and Lobby? 6.Coalition building 7.What is lobbying? 8.Influencing clinicians, and professional medical associations 9.Monitoring and evaluation of your advocacy activities 10.Communication Campaigns at the European level Index:

4. 1. What is advocacy? Advocacy is the act or the process of supporting a cause or issue. We advocate a cause or issue because we want to: Inform or create awareness about a cause or issue build support for that cause or issue influence others to support it and/or try to influence or change policy that affects it

5. Victoria Ayer & Colin Bunn - Advocacy Expert Series, Book 1. Advocacy Campaign Management, Edition 1 - March 2004. Publication #1-2004 5 Steps of Advocacy

6. Victoria Ayer & Colin Bunn - Advocacy Expert Series, Book 1. Advocacy Campaign Management, Edition 1 - March 2004. Publication #1-2004 Stakeholders

7. Advocacy Activities

8. 2. What is an advocacy campaign? It is a set of targeted actions to influence policymakers or general population to support a cause or issue that you wish to change. To begin an advocacy campaign you need to: Identify the cause or issue you're advocating for; you need to analyze it and define it precisely Decide who you want to support your cause or issue - who are you trying to influence or change so that they support you? Decide what you want to be the outcome of your advocacy efforts what concrete result do you want to achieve? An advocacy campaign cannot be left to a few individuals. It needs the commitment and support of everyone working in an organization and many outside too.

9. 3. How to analyze/frame the issue? What are the existing policies that cause or relate to these problems and how are they implemented? How would changes in policy help resolve the problems? What type of policy change is needed (legislation, proclamation, regulation, legal decision, committee action, institutional practice, or other)? What are the financial implications of the proposed policy change? Key questions

10. KeyAdvocacy Issues on Cervical Cancer: The vast majority of women in Europe still know little about cervical cancer or what they can do to prevent it. Many countries in Europe have ineffective cervical cancer prevention programmes or no programmes at all.

11. Know your facts and figures on your issue Collecting data about specific issues can be critical to any public event or media effort you pursue. But substantial, reliable data collection is expensive and time-consuming so try first to tap into all the existing relevant research The more facts you have to substantiate your case, the more informed and trustworthy you will appear to the public, to policy makers, and to others you are trying to reach. The most effective messages emerge from solid foundations of facts about your issue and your group.

12. Collecting data on your issue RESOURCES – FINDING CERVICAL CANCER DATA: International Agency for Research on Cancer (IARC) European Center for Disease Prevention and Control (ECDC) European Cervical Cancer Association (ECCA) European Network for Indicators on Cancer (EUNICE), European Network of Cancer Registries (ENCR), International Federation of Gynecology and Obstetrics (FIGO) RESOURCES – FINDING CERVICAL CANCER DATA: International Agency for Research on Cancer (IARC) European Center for Disease Prevention and Control (ECDC) European Cervical Cancer Association (ECCA) European Network for Indicators on Cancer (EUNICE), European Network of Cancer Registries (ENCR), International Federation of Gynecology and Obstetrics (FIGO) Organizations working on health advocacy issues should collect data and analyze them, both for their own knowledge and to report to stakeholders. If you are looking for information beyond what you can collect yourself, there are several sources of public data available on the Internet. Use different search terms to find ready-to-use statistics or data you can analyze yourself.

13. Using Data Take some time to understand the source of data. When and how was the data gathered? For example, a sample may be statistically representative at national but not at local level. Get comfortable with the basic concepts of percentages, rates, per capita and standard deviation. You will be in a position to better explain to your audience what the numbers really mean. Almost all data you will use will be “samples.” There are a variety of sampling methods, but generally, when using large government databases to produce descriptive statistics, you can be sure that the data you’re using is from an acceptable, representative sample. For deeper analysis, particularly one that you expect to yield controversial results, consult with an experienced researcher.

14. Searching data about cervical cancer in your country Query the database about prevalence, incidence, mortality, primary prevention, secondary prevention in your country Query the database about the data described above in the hard to reach populations specific for each Member State Key questions when gathering data for cervical cancer advocacy: Is there specific epidemiological data for cervical cancer? How many women are newly diagnosed with cervical cancer? What’s the incidence of cervical cancer in your Member State? How many women die for cervical cancer? Is there a Cervical cancer screening program and its coverage; and, Is there data on program costs and the cost-effectiveness of screening as a cancer prevention tool?

15. Country Incidence Crude rate/ ASR(W) per 100000 women per year (year) Mortality Crude rate/ ASR(W) per 100000 women per year (year) Stage at diagnosis stage I % stage IV % Bulgaria 29.6/20.6 (2008)8.8/5.3 (2008)43.6% (2008)4.0% (2008) Cyprus / 5.3 (2007) /1.7 (2008)50 (2007)3,33 (2007) Czech Republic 18,8? (2007)Absolute numbers46.9 (2007)9.9(2007) Greece According to the WHO/ICO Information 5.5/3.8 (2008)2.8/1.5(2008) Hungary Absolute numbers Italy 9.8? (yrs 1998-2002)Absolute numbers Latvia 18,9? (2009) 20.9? (2010) Absolute numbers17 (2010) Poland 16,6/11,2 (2008)8,9/5,3(2008) Romania 18.97-24.58 ASR(W) (2000-2006) 31(36)? (2008 WHO) 10.64-11.51 ASR(W) (2000-2006) Slovakia 15.8 (2008) ASR(W)4.8 (2008) ASR(W)455 Slovenia 12.6? (2008) 20.6? (2003) 2,8 ASR(W) (2008 Globocan) 42.8 (2007-09) 11.9 (2007-09) EU-15 (2004) 11.8/9.54.9/2.8 EU-27(2004) 13.9/12,46.6/4.8 Example: EPIDEMIOLOGY DATA OF CERVICAL CANCER IN THE AURORA’S PARTICIPATING COUNTRIES

16. 4. Advocacy Campaign’s goals Goals Start by listing the goals of your campaign. Be specific and precise. This will help you to see where you have had success, where you have not, and where you need to go next. Questions to help you to set goals What is the campaign’s ultimate goal? What specific landmarks (goals) do you hope to achieve on the way to that ultimate goal? What are the short-term and long-term objectives needed to meet What we define as our ultimate goal? How can these be stated so that they are clearly understood? What will constitute “success” or victory? How will be measured? Select the target audience

17. Cervical Cancer Prevention Advocacy Goals To raise awareness of cervical cancer and how it can be prevented among: – women so they will learn what they need to do to avoid this disease and access the services where they are available, – politicians and public health officials so they understand the benefits of prevention programmes and prioritise their implementation where they are not available. To promote Cervical Cancer Screening, particularly focusing on hard to reach populations

18. What we want to achieve as trainers and as advocates To promote Cervical Cancer Screening, particularly focusing on hard to reach populations To raise awareness of cervical cancer and how it can be prevented Goals Trainers Advocates Lobbing Strategies to seek political - legislative support for Cervical Cancer Screening’s Programs Education Strategies To assess innovative approaches to Cervical Cancer Screening and to improve service delivery systems. Mobilization Strategies to built support for Cervical Cancer Prevention and Screening Program’s Implementation

19. 5. Who Advocate and Lobby? Target Actions National policymakers Generate awareness of and demand for Cervical Cancer Prevention Programs at the national and regional levels. Allocate resources to Cervical Cancer Prevention Programs at the country level and implement policy changes, such as screening into national health strategies. Health program managers Urge that screening form a part of cancer prevention strategies. Create education programs that address the morbidity and mortality of HPV related illness and stress the preventability of cervical cancer. Link screening to existing cancer prevention services as appropriate, given target populations served. Clinicians who serve women Educate their patients about HPV. Adopt screening as part of women checkups. Community leaders, and sexual and reproductive health advocates Disseminate information on screening availability in conjunction with existing HPV prevention programs. Create education programs that address the morbidity and mortality of HPV related illness and stress the preventability of cervical cancer. Adopt lessons learned from the breast and cervical cancer awareness movements using small and mass media and interpersonal communications to influence perceptions and screening uptake. Media Ensure communities are informed regarding cervical cancer and screening programs. Women Mobilize women to demand access to screening

20. How to build support to promote Cervical Cancer Screening Develop an advocacy coalition to support governments, and health and finance ministries to develop communication strategies to increase awareness of HPV and of cervical cancer prevention. Lobbying with policymakers (legislators, ministries of health, gender and education and other regional entities) to discuss cervical cancer as a national health concern Influence clinicians, and professional medical associations to assess innovative approaches to Cervical Cancer Screening adherence and to improve service delivery systems. Develop materials to describe the rates of cervical cancer in various countries/regions together with coverage of cervical cancer screening and other prevention measures.

21. 6. Coalition building One of the most effective ways you can build support is by participating in a coalition. A coalition is a group of several like-minded organizations working together to achieve common goals. An alliance or coalition with other organizations or individuals that pursue the same policy change is normally built upon specific policy issues and goals. Coalitions can be permanent or temporary, single or multi- issue, limited to certain constituencies or geographically defined. Once a policy change has been achieved, a coalition may cease to exist, or may continue to address other joint policy concerns.

22. Coalition building A coalition can help you: build on a continuing base of support increase the influence of your campaign’s efforts develop new leaders for your campaign broaden the scope of your campaign Increase your financial and programmatic resources

23. Coalition building: Identifying allies Having allies is critical for an advocacy initiative. You can usually increase your impact by collaborating with other individuals or organizations that are interested in the same policy issue. Joint efforts, skills, and resources of several organizations and individuals are more likely to minimize risk, draw attention to key policy issues, and result in successful policy change. Make lists of: Local and/or national groups who are working on similar issues Individuals who work or volunteer for these groups Organizations that are working on different issues, but who have a commitment to cancer prevention and sexual and reproductive health will most probably support you.

24. Coalition building: Identifying Opponents Part of refining an advocacy strategy is finding out who may oppose your policy goal. This is just as important as identifying your allies. You can be more effective if: You understand your opponents' reasoning and why they might feel threatened by your proposed policy change. For example, an initiative that seeks changes in policies related to contraception may encounter the opposition of religious leaders. You include messages and activities targeted at your opponents. In that case, opponents can become a secondary audience for your advocacy initiative. You assess whether there is anything you can do to persuade your opponents to change their opinions, or at least neutralize their influence on the policy change you want to pursue.

25. Example: The National Cervical Cancer Coalition (NCCC) is a growing coalition of people battling cervical cancer and HPV related issues in the USA Coalition members Primarily Women, family members, friends and caregivers, Women's groups Cytotechnologists, Pathologists and Gynecologists Laboratorians Bio-Tech companies Cancer Researchers Hospitals Organizations providing cervical cancer detection programs Other related associations, both national and worldwide Advocacy Goals What they have in common is an interest in: Desire to provide a safe and educational place for women to go that have or had cervical cancer and HPV. Activities Prevention, awareness and education efforts FREE Pap Test Day held the second Friday of January for women that have not had a Pap test for three (3) years. Conferences with CME credits for physicians along with the National Ovarian Cancer Coalition (NOCC) on gynecologic cancers. The NCCC runs its award winning cervical cancer web site and is developing a national network of local state affiliates.

26. 7. What is lobbying? If you are seeking political or legislative change, you need to make contact with policy makers and ''lobby'' them to see the issue the way you see it. Lobbying is most effective when you are in need of something specific from the legislative system.

27. National policymakers How to lobby? Familiarize yourself with tine system or legislative process itself - the written and unwritten "rules" of how it works Also familiarize yourself with the individuals you are trying to reach. Because different policy makers have different priorities, you should tailor your presentation to their interests when you contact them; If you want to lobby for a particular bill, law or issue with a policy maker you can communicate with them either through a letter, or even better a personal meeting or a phone call. Legislators To seek political legislative change in favor of Cervical Cancer prevention programmes Lobbing What for? How?Who?

28. Understanding the National Landscape Key questions: Who is pushing for and tracking progress? Who is responsible for cervical cancer prevention and control at the Ministry of Health? Is there a National Cancer Registry tracking progress? If not, are there smaller registries at hospitals and/or clinics that offer screening? Do national and community leaders see cervical cancer as a problem? Are these programs ongoing? Are national or sub-national cervical cancer advocacy or education efforts underway? Barriers advocates can find: Little understanding of cervical cancer People often do not know that cervical cancer is preventable Lack of resources for the health sector National cervical cancer screening programs are not considered effective Minorities and unserved women are underrepresented Vaccination versus screening

29. 8. Influencing clinicians, and professional medical associations To reach experts on cervical cancer issues: Put them on your mailing list to receive selected materials Invite them to your events and conferences Consider inviting them to become a member of a special committee or working group Send them an introductory letter and materials about your campaign Go and visit them and ask them to be involved Identify potential supporters You need to know who these individuals and organizations are.

30. Influence clinicians, and professional medical associations to do what? Review internal policies and procedures to ensure that programs are accessible and friendly to women. Ensuring: o Affordability o Confidentiality and privacy o Availability in local languages o Availability at locations and times convenient for women.

31. 9. Monitoring and evaluation of your advocacy activities Monitoring is the process of routinely gathering information on all aspects of an advocacy campaign and using the information to make decisions and take action. Evaluation involves a systematic, objective analysis of the advocacy campaign, in terms of its effectiveness and efficiency, and its impact in relation to its objectives. In advocacy we evaluate: Advocacy objectives Message delivery and communications Use research and data Decision making Coalition building Overall management/ organizational issues

32. 10. Communication Campaigns at the European level 1. ECCA (European Cervical Cancer Association): Campaigns at European level involving general population and decision makers European Cervical Cancer Week Petition to STOP Cervical Cancer Pearl of Wisdom For more info: http://www.ecca.info/index.htmlhttp://www.ecca.info/index.html 2. WACC (Women against Cervical Cancer): Education Campaigns Educational books and flyers Interviews and videos Publications For more info: http://www.wacc-network.orghttp://www.wacc-network.org

33. Reference The Alliance for Cervical Cancer Prevention (ACCP) www.alliance-cxca.orgwww.alliance-cxca.org Center for Lobbying in the Public Interest (2007), Know The Legislative Process & Players. Center for Lobbying in the Public Interest (2007). Working in Coalitions. Cervical Cancer Action: A Global Coalition to Stop Cervical Cancer (CCA). (2007). Coalition Building: A Cornerstone of National Advocacy, Policymaking and Effective Cervical Cancer Prevention Programs ECCA (European Cervical Cancer Association): http://www.ecca.info/index.htmlhttp://www.ecca.info/index.html EuroNGOs (2011). SRHR Advocacy in the new aid environment: Targeting European donors at embassy level Fieldstone Alliance Nonprofit Guide to Forming Alliances: Working Together to Achieve Mutual Goals www.fieldstonealliance.org www.fieldstonealliance.org Fox, Leslie (1997). Advocacy Strategies for Civil Society: A Conceptual Framework and Practitioner's Guide, USAID/Global Bureau, Center for Democracy and Governance, Washington, D.C. The International Planned Parenthood Federation (IPPF) (2011), From advocacy to accessTargeted political action for change The Knowledge for Health (K4Health) project http://www.k4health.org/pr/advocacy/strategy.shtmlhttp://www.k4health.org/pr/advocacy/strategy.shtml The National Cervical Cancer Coalition (NCCC). http://www.nccc-online.org/about.html WACC (Women Against Cervical Cancer) http://www.wacc-network.orghttp://www.wacc-network.org World Health organization (WHO) 2002, Cervical Cancer Screening In Developing Countries. http://www.rho.org/files/WHO_CCscreening_2002.pdf http://www.rho.org/files/WHO_CCscreening_2002.pdf