AMD Alliance International: Advocacy Toolkit

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Introduction

Section 1Defining the Problem andSetting Your GoalSection 1 Review

Section 2Planning Your CampaignSection 2 Review

Section 3Media RelationsSection 3 Review

Section 4Government RelationsSection 4 Review

Section 5Creating Infrastructure fora Public CampaignSection 5 Review

Section 6Public EngagementSection 6 Review

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Section 7Critical StakeholdersSection 7 Review

Section 8E-AdvocacySection 8 Review

Section 9Bringing It All TogetherSection 9 Review

Section 10Measuring Your SuccessSection 10 Review

Appendix ASample Template SupporterLetters Used In CNIB and RNIB’sCampaign

Appendix BE-Advocacy Samples

Appendix CSample Letter to SupportersTouting Success

Table of Contents

AMDAI ADVOCACY TUTORIALINTRO /

Introduction

So you’ve decided to run an advocacy campaign to helpincrease access to AMD treatment in your region or country.Congratulations! Reaching out to involve others in a commoncause, particularly when you have support from the public, isone of the most powerful things you can do to create change.

Running a successful advocacy campaign takes dedication,lots of work, resources (financial and human) and, above all,a carefully planned, strategic approach. But you can do it!This tutorial is designed to guide you through the process,from defining the problem and writing materials all the waythrough successful execution and evaluation.

In this tutorial, we will be using best practice examples fromCNIB’s Right to Sight campaign in Canada and an RNIBcampaign in the United Kingdom, both of which sought tooverturn government decisions not to recommend ranibizumab(Lucentis), a sight-saving treatment for wet AMD, ingovernment health plans. The lessons learned from thesetwo campaigns can easily be applied to other scenarios.

This tutorial isdesigned to guide youthrough the process,from defining theproblem and writingmaterials all the waythrough successfulexecution andevaluation.

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awareness of AMD and its prevention in your region.

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Your goal should be achievable. It should be something your realistically thinkyou have a chance at accomplishing.

Your goal should also be measurable. It should be easy to determine whetheryou were successful at the end of the campaign by whether or not your goal wasachieved.

SETTING SUBJECT SCOPE

Above all, keep it simple when setting your goal. You should try to achieve oneimportant thing – the thing that will benefit the maximum number of people withAMD. Don’t try to achieve too many things in one advocacy campaign. If you do,you will find it difficult to reach people because your issue and your message willbe too convoluted.

A treatment is covered forreimbursement, but there areunreasonable restrictions ontreatment, such as only allowingtreatment in one eye, or for newlydiagnosed patients.

Treatments are not being properlyregulated for safety.

To get the government to broadencoverage terms for patients whowould benefit.

To get the government to pass lawsto regulate the treatment.

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Your goal shouldtry to achieve oneimportant thing –the thing that willbenefit the maximumnumber of peoplewith AMD.YOUR GOAL SHOULD ADDRESS THE PROBLEM

AS SPECIFICALLY AS POSSIBLE.

For example, if you know that a government body has rejected a treatment,but is considering it again in an appeal process, then your goal would befor that body to accept it during the appeal. If you know that you want toget coverage of a treatment for a certain amount of time, or in both eyes,include that as part of your goal.

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Section 1:Defining the Problem andSetting Your Goal

SETTING YOUR GOAL

It is important to set out your exact goal. Putting your goal in writing will helpyou to clarify your thinking. What is the problem that is happening now, andwhat would you like to achieve to solve this problem? Some examples might be:

PROBLEM GOAL

The government is taking a lot oftime in considering a treatment foruse in a country.

A new treatment has not beenrecommended for reimbursementunder government health plans by anadvisory body.

Hospitals and eye doctors in yourcountry are not providing accessto a new treatment, despite agovernment decision that thetreatment should be providedto patients.

To get the government to come to adecision on the treatment in a timelymanner.

To get the advisory body to overturnits decision.

To get the health care profession tostart providing the treatment thatthey are mandated to provide by thegovernment.

Before you jump in to designing your campaign, you firstneed to define the problem that you hope to solve. Definingyour problem accurately will ensure that you get themaximum benefit out of your campaign.

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It is important to setout your exact goal.Putting your goal inwriting will help youto clarify yourthinking.

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DEFINING THE PROBLEM AND SETTING YOUR GOAL

Before you begin, make sure you have the basics of your campaign in writing,and that everyone involved in the campaign agrees on what you have decided.Here are some points you should be able to answer:

The specific problem our campaign is addressing:

The specific, achievable goal we hope to accomplish in response to this problem:

We will know we have been successful in addressing the problem if this happens:

What are we trying to accomplish, and what are we not trying to accomplish inthis campaign? We will limit the scope of our subject to:

Where are we trying to achieve our goal? The geographic scope for ourcampaign is:

Section 1 ReviewComplete this review

before moving on to

section 2.

SETTING GEOGRAPHIC SCOPE

Be clear about the geographic scope for your goal. Are you trying to changethings in just one area of the country? In one province or state? In the country asa whole? Or perhaps it makes sense for you to be running a campaign across anumber of countries, perhaps working in partnership with other AMDAI members(e.g., you might do this if your issue relates to the European Union or a similarmulti-country entity). Make sure you know exactly which geographical area isinvolved in your campaign.

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Be clear about thegeographic scopefor your goal. Andremember that yourgoal should besomething you thinkyou have a chance ataccomplishing.

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WHEN FIGURING OUT WHO YOUR TARGET(S) SHOULD BE, ASK YOURSELF:

• What level of government is involved with this issue? The federalgovernment? A state, provincial, or regional government? The level ofgovernment you target may not be the same as your geographic scope. Forexample, you might have a national campaign, but be targeting ministers orlegislators at the state or provincial level because treatment issues fall intothis jurisdiction.

• If you are targeting government, what part of government should beinvolved? Typically for AMD treatment issues, your Health Minister orCabinet Member will be responsible for this area. But do not overlook otherministries that may also have an interest in AMD treatment, for example, aMinistry of Seniors Issues, if you have one.

• Who is the correct person to target? In government, it might be a Minister.But you might also ask people to target their Member of Parliament or memberof Congress, either at the federal or state/provincial level. If you are targetinga committee or advisory board, you could target the chair of the board or thegovernment bureaucrat who coordinates the board, or you could even targetevery member of the committee itself.

• Are you keeping your targets streamlined? Try not to have too manyunique targets for your campaign. The more you have, the more work it willbe to manage your campaign and keep your message and focus clear.

• Do you have up-to-date contact information for your target(s)? You shouldget their names, titles, addresses, office phone numbers, fax numbers, anddirect email addresses. You should know what the proper salutation would beto this person (e.g. Dear Minister X, Dear Prime Minister Y, etc.). Try findingthe information you need on the Protocol or Contact Us section of theorganizational website. Or, call the person’s office and ask.

• Be careful not to target anyone who is already on side with your cause.For example, if you are asking for a treatment to be reimbursed in each ofyour country’s states or provinces, and you know that one of them is alreadyconsidering the treatment, you may want to exclude that state or province inyour campaign.

Be specific in definingyour advocacy target.Your advocacy targetshould always be aperson or people –never just anorganization or agovernment bodygenerally.

DETERMINING YOUR ADVOCACY TARGET

Your advocacy target is not the same as your goal. Your advocacy targetis the person (or persons) you want to reach with your message – thosewho have the most power to help you to achieve your goal.

As with defining your advocacy goal, it is important to be specific in defining youradvocacy target. Your advocacy target should always be a person or people– never just an organization or a government body generally.

You might want to make one person your primary target, and use anothertarget in a secondary way. For example, you could have the public send lettersto a health minister and copy the decision-makers (a committee or board) as asecondary target.

You can even have several primary targets. In this case, you would ask thepublic to send one or more letters for your campaign (possibly copyingsecondary targets each time).

Section 2:Planning Your Campaign

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Now that you have defined the problem, set your goal,and determined your geographic scope, it’s time to planyour campaign.

THERE ARE TWO TYPES OF ADVOCACY TARGETS.DEPENDING ON THE CIRCUMSTANCES, YOU MAY WANTTO TARGET ONE OR BOTH OF THEM:

1) Decision-makers: the people who are directly responsible for makingyour goal possible.

2) Influencers: people who were not directly responsible, but who may haveinfluence over decision-makers, or who are responsible for the decision-making body in the first place.


IDENTIFYING RESOURCES

One of the main reasons that advocacy campaigns fail is that the peopleorganizing them do not properly anticipate the financial resources – andparticularly the human resources – required to make a campaign a success.

Before you begin, you should create a budget for your campaign and try toanticipate all of the costs that might reasonably be involved. You also need todetermine how many staff or volunteers you will need working on the project.

Allocating sufficient staffing resources is one of the most important things youcan do to make a campaign a success. Campaigns typically happen quickly,and require tremendous energy and time to make them happen. If you do nothave the resources available, you may not get things off the ground, or youmight not be able to act when you are presented with a good opportunity.

Human resources you might consider:

• Staff at your organization• Volunteers at your organization• Staff or volunteers at other organizations with whom you can partner• Other AMDAI members• External consultants and agencies

ASSIGNING A PROJECT MANAGER

This point cannot be overemphasized. For a campaign to succeed, theremust be one person assigned to ultimately run it. Often this person is calledthe campaign’s Project Manager.

Your project manager will help to design the campaign plan, supervise itsexecution, ensure everything is running smoothly, troubleshoot and anticipateany problems, and report progress to others at your organization. Make sureeveryone working on your campaign knows who is in charge. And make sureyour Project Manger has the leadership skills, time, and resources to do his orher job effectively.

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Your project manager will help to design thecampaign plan, supervise its execution, ensureeverything is running smoothly, troubleshootand anticipate any problems, and report progressto others at your organization.

TIMING

You will need to decide about the timing of your campaign – how long it willrun, and when it will start. In general, for campaigns that involve the public,a shorter duration (two or three weeks) is ideal, as it will get people’sattention and force them to act quickly. Set a specific start and end date(and time) for when you will run the campaign.

You might time your campaign to a specific event. For example, if you areexpecting the government to make a decision on your problem at a particularmeeting, schedule your campaign in the weeks leading up to that meeting andend the morning that the decision is to be made.

When figuring out the timing of your campaign, be sure to give yourself enoughtime to prepare for it. At the very minimum, you will need four to six weeks toprepare before the campaign begins.

Watch out for the following when choosing the timing of your campaign:

• Major public holidays in your country that are likely to occupy people’sattention or send them out of town (traditional holiday season, IndependenceDay, Eid, Diwali, Christmas, New Year’s, etc.)

• Events or activities that may take attention away from your campaign: forexample, a national election (unless you are specifically trying to be a partof the debate with your issue), another important national occasion, or acampaign by another organization that may compete for attention with yours.

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Set a specific startand end date (andtime) for when youwill run the campaign.And you shouldcreate a budget foryour campaign andtry to anticipate allof the costs thatmight reasonablybe involved.


Remember:Public engagementcan be the mostpowerful tool of all.When the public isbehind your cause,it can attract a lotmore attention.

YOUR STRATEGIC TOOLBOX

The final step in planning your campaign is identifying the tools you will use toachieve your goals. These fall into four main categories:

Government RelationsWhen your organization is working behind the scenes to appeal to governmentdecision-makers about your goal.

Media RelationsWhen your organization is appealing to the media to carry stories about yourissue and goal. When done well, media relations can amplify your efforts inother areas.

Critical StakeholdersCritical stakeholders are individuals and organizations who are directly alignedwith your cause. Involving critical stakeholders can demonstrate that an issuehas broad-based support and is not just important to your organization.

Public EngagementPublic engagement can be the most powerful tool of all. When you reach out toeveryday people who are affected by your issue, you tap into a deeply committedgroup who will throw their support behind you and share your message withother members of the public through word of mouth. When the public is behindyour cause, it can attract a lot more attention.

It may not always be necessary or wise to use all of these tools in yourcampaign. For example, if you are working on an issue that the government ishighly sensitive about, and you feel they may be more receptive to your causeif you speak to them on your own, it may not make sense to engage the publicor the media.

But often you can benefit by using all of these tools together. And when theyare used together, the results can be extremely powerful.

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NOTES:

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PLANNING YOUR CAMPAIGN

When planning your campaign, make sure you have the following points covered,and the earlier, the better:

Primary target

Primary target(if more than one)

Secondary target(if applicable)

We have covered all of these points:

We have up-to-date contact information for our target(s) – properly spellednames, titles, addresses, office phone numbers, fax numbers, emailaddresses, salutations.

We have kept our target(s) as streamlined as possible.

We have checked to make sure we are not targeting anyone who is alreadyon side with our cause.

Our campaign will begin on

Our campaign will end on

Section 2 Review

TARGETS Name of MyAdvocacy Target

Decision-makeror Influencer?

Reason I’veSelected thisTarget

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RESOURCES

We will require the following resources to complete our campaign successfully.

Financial resources:

Which will come from:

Human resources:

_____ people full-time for _____weeks

_____ people part-time for _____ weeks

These people will come from the following areas or organizations:

The campaign Project Manager is:

Experience for the job:

STRATEGIC TOOLBOX

We will be using the following tactics in our strategy (check all that apply)

Government relationsMedia relationsCritical stakeholdersPublic engagement

AMDAI ADVOCACY TUTORIAL p. 17SECTION 3 /

>> In your press release,

present the informa-

tion succinctly with

the most important

information up front.

BACKGROUNDER AND FAQ

Your backgrounder gives more information about your issue and campaign.It might, for example, give detailed information about the treatment, othercountries where it is used, and what has happened to date in your country withrespect to this treatment. The Frequently Asked Questions (FAQ) documentgives questions that a layperson could reasonably be expected to ask aboutyour issue, and supplies the answers. Both of these documents can be sharedwith the media (in a media kit, or on your website) and they can also be sharedwith the public.

PRESS RELEASE

Your organization should send out a press release to announce the start of yourcampaign. Try to look at your issue from an outsider’s perspective when writingyour release – what would a journalist find newsworthy about your issue?Present the information succinctly (no more than a page and a half), with themost important information up front. Be sure to cover:

• Why your organization is launching the campaign• What you hope to achieve• How you hope to achieve it• Why the issue is important – what is the problem that needs to be addressed

Be sure to include a short, impactful quote or two from someone at yourorganization – usually the person you have chosen to be your mediaspokesperson.

At the end of the release, include your boilerplate (a paragraph that explainswhat your organization is and does) and the contact information for the mediarelations coordinator for your campaign – this is the person who will fieldinquiries from members of the media and arrange for interviews betweenjournalists and your spokespeople.

You can send out your press release by faxing or emailing it directly toreporters and news outlets that may be interested in the story (health reporters,in particular, should be targeted). You can also send it out on your country orregion’s newswire if you have the financial resources to do this. It can be wellworth the investment.


Section 3:Media Relations

KEY MESSAGES

Before you start any media relations campaign, you need to know what your keymessages are. What are the main points you would like to make about AMD, thetreatment, and the goal you have set for yourself? What are the key facts,numbers, or statistics that back up your campaign?

Anticipate any criticisms that are likely to be leveled about your campaign or yourcause, and any questions people are likely to have about it. Make sure you coverthese topics in your messaging.

Write your key messages with one unique thought per bullet point. Your keymessages should fit on a page, and they may even be just a few points long.

The document should not be made public, but it should be shared with yourcampaign staff and executives internally, and particularly with any of yourmedia spokespeople. It should also inform all of your other thinking and writingon the campaign – make sure everything you do or say is consistent with, andreinforces, your key messages. Although this document is primarily for internaluse, keep in mind that it could end up being more widely distributed, so bemindful about its contents.

Media relations can be an art. If you can, make sure youhave an experienced communications staff person handlingthis portion of your campaign – or hire someone to help youwho has experience in this area.

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It may not always be possible to line up someone for the media to talk to inadvance. For example, you may get a request to speak to a doctor or a patientin a very specific region of your country, and then have to look for the rightperson for the job. Always ask what a journalist’s deadline is so you can set upthe interview in sufficient time. Many journalists work to tight deadlines, and youwill be more successful with coverage if you can accommodate this.

FOLLOW-UP RELEASES

There may be times during your campaign where you can benefit from sendingout a follow-up release. If you achieve a large milestone in your campaign (amajor celebrity endorses your cause or you receive overwhelming support fromthe public, for example) you will want to share this with the media to strengthenyour campaign. A good time to send out a follow-up release is in the last fewdays of your campaign, when you can talk about the success you’ve achievedand make one last push for people to support your cause.

Do not send out too many follow-up releases. In a campaign of two to threeweeks, one or maximum two follow-up releases should be sufficient.

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ADVISORIES

If you are having a public event during your campaign (perhaps a rally, or aformal presentation of a petition to government), you will want to invite the mediaby sending out an advisory. Send your advisory to the same media outlets andjournalists that received your initial release. Be sure to include all of the details:

• Who will be there?• Where is the event happening exactly?• What time are different parts of the event happening?• What day is it happening?• Will there be any good photo opportunities?• Most importantly – why is it significant?

Be sure to include your boilerplate again at the end and your mediaspokesperson’s contact information. You should also include links to yourwebsite where a reporter can find your other media materials.

MEDIA SPOKESPERSON

You need to select a media spokesperson from your organization well in advancebefore sending out any release. Make sure you have chosen someone who isarticulate, easy to understand, engaging, and well versed in your issue. Ideally,this person will have had previous experience speaking to the media. You needto brief your spokesperson about your issue, and make sure they are preparedfor any interview (provide background on the media outlet, the reporter, theformat for the interview, and questions that are likely to be asked). You maywant to provide training to new spokespeople on how to speak to the media.

Besides having a spokesperson from your organization, it is wise to think of otherpeople that the media may wish to talk to. In the case of AMD, this is likely to beAMD patients and caregivers and eye doctors who treat AMD. Line up some ofthese people in advance, and brief them on the issue. Make sure they would bean effective spokesperson (engaging, not shy, and with something to say that willcontribute to the public’s understanding of your issue).

In the case of a patient, you may want to accompany him or her to in-personinterviews to provide extra support and/or provide transportation to and fromthe interview as a courtesy.

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Choose aspokesperson whois articulate, easyto understand,engaging, and wellversed in your issue.Ideally, this personwill have had previousexperience speakingto the media.


MEDIA RELATIONS

Tap into the power of the media to amplify the success of your campaign.Here is what you need to do.

We have created key messages, a backgrounder, and an FAQ document.

We have a well-crafted media release ready to go to announce our campaign.

Strategy for sending our initial release out:

Strategy for following-up with those who receive it:

The person handling media relations at our organization is:

The spokesperson for our organization is:

Secondary spokesperson for our organization:

We have recruited other spokespeople that journalists might like to talk to.

AMD Patients:

Physicans who treat or study AMD:

We anticipate the following situations that would benefit from a follow-up release:

Section 3 ReviewSTAYING IN CONTACT/BEING PROACTIVE

You will get more media coverage if you can be proactive. Don’t just send outyour release – call journalists up and make sure they received it. Ask if they haveany questions for you. Ask what they thought of your issue, and if they think theycan cover it. If not, ask them to suggest someone else at their organization thatmight be interested. Be polite, knowledgeable, helpful, responsive, and persistentwhen dealing with journalists. Stay in contact if a journalist shows interest –if there is new information in your campaign, share it with them.

USING YOUR COVERAGE EFFECTIVELY

Media coverage can be a great boost to your campaign. Be sure to leverage iteffectively. If you are trying to get the public to join your cause, make sure youinclude information in your releases about what you want the public to do andwhere they should go for more information. If you are using a government relationsstrategy, make sure your messages in the release will spark the government’sattention (you can be sure that media relations staff in the government will bemonitoring for any coverage that will impact their department, ministry, or area).

Take any positive coverage you receive and do something with it. Place linksto it within your campaign website, Facebook page, or campaign emails. Shareit with critical stakeholders. Post newspaper clippings in your building. Andreference it when speaking to government officials or the public.

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Use any positivemedia coverage youreceive to furtheryour goal. Place linksto coverage withinyour campaignwebsite, Facebookpage, or campaignemails. And makesure to share it withcritical stakeholders.


WRITTEN LETTERS

A letter from your organization to a government official is a good way toformally raise your issue with government. Your letter should be from someoneat the head of your organization (a Director, Chief Executive Officer or a BoardChair, for example). If you have a highly placed executive at your organizationwho serves in a research or medical capacity, it may be a good idea to havethis person send a letter as well.

Letters should be short – two pages maximum. The tone should be respectfuland diplomatic while stating your organization’s position clearly. Explain whomyour organization represents and why it is so connected to your issue – why doyou have the authority to speak about it on behalf of patients? Include a strongcall to action – what would you like the government to do? And indicate whetheryou will be following up at a later time with a meeting, subsequent letter, orphone call.

Written letters can be sent in the mail, or by fax or email. If you choose thelatter two options, it is customary to send a hardcopy in the mail as well. Youmay wish to include your briefing note along with your letter.

PHONE CALLS

Phone calls should be arranged in advance. Have someone skilled in GR atyour organization call an aide in the appropriate government ministry to formallyrequest a phone call between the head of your organization and the governmentofficial. The aide will schedule this phone call – be patient, as it may take a whileto arrange. Make sure that the person from your organization who will be on thecall is fully briefed about the issue and the latest developments in your campaign.Also make sure this person is given a few key points in writing that he or sheshould make during the call. These points should clearly and respectfully stateyour organization’s position and indicate what you are asking that governmentofficial to do.

Written letters,phone calls, andin-person meetingsare all important inhelping you buildrelationships withgovernment officialsand presentingthe importanceof your issue.

See Appendix Aon page 58 forsample letters.

Section 4:Government Relations

There are many different ways to pursue GR activities. You may try one ofthese tactics, or you may decide you would like to use them all.

POSITION PAPER

The cornerstone of any GR initiative is your position paper (also known as abriefing note) on the issue. You should prepare a position paper (two pages,maximum) and send it to your government contact in advance of any phonecall or in-person meeting. A position paper should outline the following:

• Background: information about AMD and how it affects patients in yourcountry or region.

• Opportunity: present the opportunity that exists to solve your problem(i.e., your goal).

• Costs: explain what the costs of non-action will be to your region orgovernment. Include as many costs as you can: financial costs to thegovernment and to society, human/social costs to citizens, and the moralimperative to act.

• Solution: Describe, in specific terms the solution you would like to see thegovernment enact to address the problem.

Your position paper should emphasize facts, hard data, and evidence. Avoidlanguage that is generic or overly emotional. Make sure the tone is respectfuland focused on solutions.

Government relations (GR) can have many benefits in acampaign: 1) It can be direct. 2) It can be a way to negotiatewith decision-makers behind the scenes. 3) It can showdecision-makers that they are not just targets of a campaign– you see them as partners you are trying to work with.4) It can build relationships with government officials thatmay benefit you even after your campaign is over.

Create a two-pagePosition Paper orBriefing Note andmake sure to sendit to any governmentcontact in advanceof a phone callor meeting.


GOVERNMENT RELATIONS

Government relations involves respect, protocol, and a well-planned approach.Make sure you have thought the process through.

We have prepared a succinct, factually based position paper to guide ourorganization’s GR activities.

We plan to send letters from: to: on this date: emphasizing thesekey points:

1.2.3.

We plan to try to schedule a phone call from: to: . The government aidewe are liaising with is: . The key points my representative is going to makeon the call are:

1.2.3.

We plan to try to schedule an in-person meeting between: from ourorganization and: . The government aide we are liaising with to arrange themeeting is: . The key points our representative is going to make at themeeting are:

1.2.3.

We have anticipated the following situations that might prompt or invite furthercontact with a government official in relation to our campaign:

1.2.3.

Section 4 Review

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IN-PERSON MEETINGS

If you are requesting an in-person meeting with a government official, make surethe person you are sending to the meeting is skilled in GR protocol and fullybriefed on your issue. As with letters and phone calls, an in-person meeting allowsyou to state your case and request a specific action. However, it also allows youto explore the issue in more detail, share information and questions, and developa rapport. In-person meetings are usually requested with government aides wellin advance, and typically the aide should be given your position paper at the timeyou are asking for the meeting.

Even if all that is accomplished at the meeting is that a government officiallistens to your position, it should be considered a success.

STAYING IN CONTACT

If you begin contact with a government official on behalf of your organization,it is wise to stay in contact. You may wish to update the official if there is asignificant development in the campaign. You can stay in contact to strategicallyexert pressure as well. For example, if your campaign receives significant mediacoverage, you could send press clippings of the coverage to your contact tokeep them abreast of the developments.

In addition, stay in contact to celebrate positive signs and outcomes, particularlyif your government official or contact helped to facilitate such an outcome (thankthem for their efforts).

Make sure to stay in

touch with government

officials about your

progress, and don’t

forget to thank them

for their support.


CAMPAIGN WEBSITE

The next thing you should have is a website. This could be a dedicatedwebsite, or it might be a dedicated section that is a part of your organization’swebsite. Make sure that the URL for your campaign website is short andmemorable. It should tie in to your campaign name if you have one. If yourcampaign website is part of your organization’s website, you may want to use ashortcut URL for the section, or purchase a dedicated URL and have it redirectto your campaign home page.

Your campaign website should outline your cause quickly andpersuasively. Make sure your website answers:

• Why is this issue important?• Who is it affecting, and how?• How did this issue come to be a problem?• Who can fix the problem?• What is the proposed solution?• Is there support or a precedent for the proposed solution? How have other

regions or countries dealt with this issue?• Who else is supporting your cause (other organizations or key stakeholders)?• And most importantly: what would you like the person visiting the website to do?

This last point is called your call to action. For your call to action, you may beasking people to write a letter, phone somebody, join a Facebook group, or tella friend about the campaign. You may even have more than one call to action(for example, you might be asking people to write a letter and join a Facebookgroup). Make sure that your most important call to action appears first – itshould be located close to the top of the home page on your campaign website,so that if people don’t have time to read the whole page, they can quickly findout how to take action. Other calls to action can be listed further down on yourhome page, or on buttons or menu items on the page.

Your campaign website might be one page or several. Make sure it is logicallyorganized according to web usability principles. And make sure it is accessibleso that those who have macular degeneration (or other forms of visualimpairment) can use it with access technology.

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Websites can playan important rolein your campaign.Make sure yourwebsite outlines yourcause quickly andpersuasively and hasa call to action abouthow people can help.

Section 5:Creating Infrastructurefor a Public Campaign

MARKETING CONCEPT

You should think about a marketing concept for your campaign – a way ofthinking and talking about your issue that will capture the public’s imagination.The tutorial in section 3 on Media Relations discusses creating key messages toinform a campaign. These are a good place to start when coming up with yourmarketing concept. When creating your concept, you might want to develop:

• Campaign name: Not all campaigns require names, but it can be memorableto have one. A campaign name should be short and catchy. It may involvea clever play on words. It does not have to describe everything about yourissue in one phrase, but it should get at the overall concept and why it mattersto people.

• An image: Can you think of an iconic image to capture what your campaignis about? Make sure that you have the rights to use the image. If you havean image, you can use it on all of the materials throughout your campaign –this will help people to connect all of the pieces together and create a stronger“brand” for your campaign. We do not recommend creating a separate logo foryour campaign, because you will want to use your own organization’s logo oneverything.

• A graphic design concept: How do you want your campaign materials toappear to the public? Everything you create should look as if it came fromone place, so think about what colours, fonts, and graphic styles you shoulduse consistently throughout your campaign. Make sure you use large printso that people with low vision can read things more easily.

Regardless of the method you use to run your campaign,there is some basic infrastructure that can benefit youenormously if you can get it in place.

>>

Capture attentionthrough marketingconcepts that mightinclude a catchyname, powerfulgraphic, or iconicimage to create astronger image foryour campaign.


CAMPAIGN EMAIL

Finally, it can be very helpful to develop a campaign email. This is a speciallydesigned email that you can send to all of your contacts to tell them about thecampaign and ask them to take action to support you. It is also an email thatthey in turn can forward to their contacts, creating a viral effect.

You may want to design your campaign email as an accessible HTMLdocument that uses your name, image, and graphic design concept. If youdon’t have the ability to do HTML design, then a text email is sufficient. Theimportant things to remember when drafting the email are:

• Keep it short, no more than three or four short paragraphs. You don’t need togive all of the information, just enough to get people’s attention and makethem want to learn more.

• Keep the language persuasive, and imagine the issue from the point of viewof the person who will read it.

• Make sure it is clear that the email is coming from your organization. Useyour logo if you are using HTML.

• Have a prominently displayed hyperlink or a button (titled something like “Actnow” or “Send a letter”) to send readers to your campaign website where theycan immediately support you.

• If there is a deadline to act, make sure that is part of the email.

• Think carefully about what to put as the email’s subject line. It should conveyurgency, explain who will benefit if the reader helps, and list the deadline.

• If you are using an HTML email, consider a headline to capture theimagination as well. (CNIB’s was “Your right to sight is at risk”)

Just as there is an art to developing media materials and key messages,developing a marketing concept and writing and designing campaign websitesand emails also requires a very specific skill set. If you can, make sure youhave an experienced communications staff person or marketer handling thisportion of your campaign – or hire someone to help you who has experience inthis area.

>>

Email is an easy

and cost-effective way

to connect with a lot

of people rapidly.

p. 29

NOTES:



CREATING INFRASTRUCTURE FOR A PUBLIC CAMPAIGN

If you can create a dynamic infrastructure, including a strong marketing conceptand an engaging campaign website and email, you’ve got the foundation youneed to move and inspire your audience. Go for it!

We have assigned the following people (with communications expertise) to comeup with our marketing concept:

The name of our campaign is:

The image we are using for our campaign is:

Our graphic design concept involves:

We have created a campaign website. It will be

Part of our own website (URL: )

A dedicated website (URL: )

We have covered the following in designing our website:

Incorporated our campaign name, image, and graphic design conceptShown why our issue is importantShown whom it is affecting, and howExplained how this issue came to be a problemExplained who can fix the problemListed our proposed solutionListed any support or precedent for our proposed solutionMentioned who else is supporting our cause (other organizations or keystakeholders)Provided a call to action:

Section 5 Review

AMDAI ADVOCACY TUTORIALSECTION 5 REVIEW /

Number of pages on our website:

Contents of these pages (list what will be on each page):

We plan to create a campaign email. Key points to mention in the email:

Key areas not to mention (to leave for the website):

Email subject line:

Email headline:

Email checklist:

No more than three to four paragraphs.Persuasive and written with the audience in mindClearly from our organizationIndicates the deadline for action (and the reason for the deadline)Has a prominent link or button so that the person reading it can “act now”

p. 31


There is nothing worse than asking people to phone a number, only to realizethat you have accidentally told people to call the wrong person (who is veryannoyed at all of the phone calls!).

Make a list of your targets and their phone numbers, and indicate who shouldcall each target (for example, people might be asked to call certain targetsbased on where they live). It is more than likely that your supporters will onlybe speaking to staff at your target’s office and not the target directly, but themessage will get through.

Make sure you give your supporters some speaking points, so they have afew key messages to deliver when they call. They should also be asking forsomething specific that feeds into your campaign goal (can the Minister lookinto this problem? Can the committee overturn this decision?) – make surethey know what to request. They should also be encouraged to be polite onthe phone, and to share their personal connection to the issue when they call.

Since there is no way to know if people are phoning your targets, you mightwant to ask them to call you or send you an email when they have done so,so you can track your progress in a phone campaign.

SOCIAL NETWORKING

Facebook, Myspace, and other popular social networking sites can be usedeffectively to mobilize support for your advocacy campaign. For the most part,social networking should be used as a secondary strategy. You will want yoursupporters to contact your targets directly (by email or phone) first. If they havetime and wish to do more, you can encourage them to join a social networkinggroup to express their support as well.

Use your campaign name and image to create a group for your campaign.Make sure that the issue is explained clearly and persuasively, and that the linkto your campaign website is prominent – make it clear that your organizationwould like people to take action there.

Make a list of yourtargets and theirphone numbers,and indicate whoshould call eachtarget. Make sureyou give yoursupporters somespeaking points.

>>

Section 6:Public Engagement

Additionally, public support can have the unrivalled benefit of viral, word-of-mouthmarketing. If you engage one member of the public in your cause, he or she islikely to tell one or more friends who may also be deeply committed to yourissue – or willing to get behind it.

Public support is also a wonderful way to connect with your natural supportbase. You may not have connections to many people who are living with AMDin your country, but by the time your campaign is through, you will have developedthis connection. You may even develop a new connection with your support baseand have it benefit you with fundraising initiatives or future advocacy campaigns.

PHONE CALLS

A phone call campaign can be a good option if you think your supporters aremore likely to have access to phones than email. It can also be powerful to askpeople to phone your target as well as emailing them.

If you are running a campaign involving phone calls, the first rule is to checkand double-check that you have the correct phone numbers for your targets.

Engaging the public in an advocacy campaign is one ofthe most powerful things you can do, if you do it correctly.A groundswell of public support will get the attention of themedia, government officials, and any other decision-makersconnected to your issue.

There are lots of methods you can use to have members of the public advocatefor your cause, including phone calls, petitions (both hardcopy and online),letters (by mail, fax, or email), social networking, and in-person protests anddemonstrations. This tutorial focuses on phone calls, e-advocacy (advocacy byemail), and social networking – all effective methods that can be deployedquickly to suit campaigns of a short-term duration.

>>

AMDAI ADVOCACY TUTORIALp. 34 SECTION 6 / p. 35AMDAI ADVOCACY TUTORIALSECTION 6 /

GROUND LEVEL ADVOCACY

Personal ground-level contact is an excellent strategy to engage the broaderpublic. You may already have great mailing lists of clients, suppliers andsupporters who know about your organization and your cause. However, youneed to broaden your support, and therefore you’ll want to reach out to a wideraudience, people who have never heard of your cause before. Media is animportant tool, and we’ve discussed that. You also need to consider how youget “boots-on-the-ground” and collect new supporters. One important way to dothis is public petitioning. Public petitioning is an important complement to yourelectronic activities. Public petitioning brings out a broader public support, whileelectronic or “E-power” is persuasive in bringing forward the people alreadyconnected to a cause.

You need to bring your “call to action” to a public location, a place where you cancollect as many supporters – and their signatures – as possible. Take your caseto places where people congregate – shopping malls, churches, senior centers,any gathering place in your town. You may also want to organize a rally or createspeaking opportunities at other local public assemblies. Are there public meetingsin which you can participate, perhaps gather signatures at the door? A petitionwith an action message targeted to key policy makers signed by as many localcitizens as possible will convince an elected official that the voters are engagedand that a wide group of citizens is watching the actions of government.

You will need to staff your ground level campaign, and there are several ways toachieve this. Firstly, you may consider a volunteer force. Volunteers are personallyimpacted are most dedicated to the cause, so consider them first. Dependingon the number of volunteers these will be the key people in the field obtainingsignatures or they will comprise the team supervising other field staff. The abilityto train volunteers with key points that affect all groups is critical in passing theinformation to the public and obtaining signatures. You may also need to hirea team of individuals who actively pursue signatures on the days chosen andsupervised by the key volunteers. You might also want to consider a work forceof both paid and volunteer personnel, depending on your resources.

>>You can and should encourage your staff and volunteers to join and participateon your campaign’s social networking group if they wish to do so. The more thatparticipate, the more interesting and successful the group will be, particularly asthey invite their “friends.”

Someone on your campaign staff should be assigned to monitor the groupregularly – daily or twice daily in the course of your campaign. Make sure thatall questions from the public get answered by someone from your organization,and as the administrator of the group, feel free to delete posts that are off-topicor clearly offensive (but do not stifle regular debate – make sure inaccurateinformation remains but is corrected).

As your campaign progresses, be sure to post useful links in one place on thegroup. You can post links where people can learn more about AMD, read yourcampaign press releases, see media coverage of the issue, etc.

The really wonderful thing about a social networking group is that it is one placewhere you can become aware of your community of supporters – and they canbecome aware of each other. You will likely find that people with AMD start postingtheir stories and photos on your group, putting a very human face on your issue.This can also be a good way to find people who have the disease if you needsomeone for a media interview.

If you do well with your social networking group (if it is popular and many peoplejoin and participate), you can use this later on in promoting your campaign. Youcan tell the media about it, for example, in a press release, or celebrate it withyour supporters in an email update.

E-ADVOCACY

E-advocacy involves a relatively new and highly effective way of doingadvocacy on the Internet using email. An e-advocacy software program allowsyour supporters to easily send letters to targets via email, automating a lot ofthe process for them (popping in the correct salutation, name and address, andproviding a template letter, for example). It also allows them to do other functionssuch as inviting their friends to participate in your campaign. Many of theseprograms let you track your progress (view copies of the letters that have beensent and run reports to find out how many letters have been sent to varioustargets). Finally, e-advocacy programs also function with a built-in database,allowing you to build a relationship with, and send follow-up email messagesto, people who have taken part in your campaign.

Section 8 of this tutorial contains a detailed examination of best practices insetting up e-advocacy campaigns.

>>

Social networkinggroups can help youcan become awareof your communityof supporters –and they can becomeaware of each other.You will likely findgroups posting theirstories and photos,putting a very humanface on your issue.


Ground Level Advocacy

We will go to these locations to gather signatures and support:

These are the people and/or groups that will help us gather signaturesand support:

AMDAI ADVOCACY TUTORIALSECTION 6 REVIEW / p. 37

PUBLIC ENGAGEMENT

There are several ways to engage the public in your campaign. Make sureyou’re choosing the right method to fit your situation, and that you have all ofthe bases covered.

We will be using the following methods of public engagement:

Phone callsSocial networking groupsE-advocacy (See Section 8)Ground level advocacy

Phone Call Checklist

We have our list of targets and have double-checked the phone numbersWe have key points available for people to mention during callsWe have asked people to be polite when they callWe have asked people to request a specific action when they callWe have determined a method to track the calls that are made

Social Networking

Site we will use:

The name of our group will be:

The person setting up our group:

The person responsible for monitoring the group at least daily duringthe campaign:

Content we will include on the group:

Links we will include:

Section 6 Review


The possibilities are endless in terms of stakeholders you can involvein your campaign. Here are some ideas:

CELEBRITIES

If your organization has a connection with a well-known celebrity who has AMD(or who has it in their family), this can be a boost. Think of politicians,journalists, artists, musicians and performers, sports figures, actors, etc. If youdon’t already have a connection to someone famous who has AMD, you canalways approach such a person.

BOARD MEMBERS

Your organization’s board members can be powerful allies. Have them send thecampaign email to their personal contacts and participate in the campaign withtheir own emails/phone calls.

YOUR DONORS, CLIENTS, STAFF, AND VOLUNTEERS

Encourage all of your donors, clients, staff, and volunteers to join the campaignand to circulate your email to their contacts.

CONSUMER GROUPS

Consumer groups should definitely be made aware of the campaign and invitedto participate.

Ways to benefit from a connection with a celebrity:

• Use quotes and testimonials from him or her in your written materials• Have a celebrity send a letter to one of your targets (and get permission

to share this letter publicly, perhaps on the campaign website)• Have a celebrity call your target (particularly a highly placed politician)

to support your campaign.• Involve your celebrity in media opportunities.

Make sure that your celebrity is well briefed about your issue, and that youkeep in touch with him or her with updates as the campaign progresses.

Section 7:Critical Stakeholders

Putting together a plan to involve critical stakeholders in your campaign canpay big dividends. Although this is an important part of your campaign, it shouldalso be one where you can save a bit on effort. You shouldn’t need to spend agreat deal of time to involve your stakeholders.

In some cases, you will want to partner with critical stakeholders rather thanonly having them participate in what you are organizing. If this is the case, youwill need to begin discussions early. As partners, you will jointly bring ideas andresources to the table to create your campaign.

When reaching out to critical stakeholders, be sure to look for the correctperson at your organization to make the initial approach. Choose someone whoalready has a connection to that group or individual or knows the best way toapproach them.

Some stakeholders may be willing to participate, but may ask you to do some ofthe work for them. For example, an organization may be willing to send a letterto a target to support your campaign, but ask you to draft it. If this happens, it isa great opportunity to make sure that your message is getting out there clearly.

Critical stakeholders are external groups or individuals whoare affiliated with your cause or who have a reason to careabout it. Critical stakeholders are not the same thing as thegeneral public – they are people who typically are alreadyconnected to you.

Putting together a plan toinvolve critical stakeholdersin your campaign can pay

big dividends.

AMDAI ADVOCACY TUTORIALp. 40 SECTION 7 / AMDAI ADVOCACY TUTORIALSECTION 7 REVIEW /

CRITICAL STAKEHOLDERS

Critical stakeholders can be the icing on the cake when it comes to a successfuladvocacy campaign. Planning ahead will help you to come up with the best listof stakeholders to approach.

Celebrities

Board ofDirectors

Our Donors,Clients, Staff,Volunteers

ConsumerGroups

Eye CareProfessionalOrganizations

HealthOrganizations

Seniors’Organizations

BlindnessOrganizations:Local

National

International

Other

Section 7 Review

p. 41

CATEGORY Name ofStakeholder

How We WillInvolve Them

Person toApproach Them

EYE CARE PROFESSIONALS

Associations of optometrists, ophthalmologists, and retinal specialists are anatural fit to work on your campaign. See if they will send your campaign email totheir members, post information about your campaign on their website or in theirpublications, and/or send a letter as an organization to support your campaign. Ifyou cannot forge a connection to an eye care professional association, send yourcampaign email individually to all of the eye care professionals that you know.You can sometimes purchase or create your own list.

HEALTH AND SENIORS’ ORGANIZATIONS

Medical organizations, health lobby groups, health charities, and seniors’advocacy groups are also a good fit, both in terms of having their memberssupport your campaign and having their organizations do so.

BLINDNESS ORGANIZATIONS

Locally, nationally, and internationally, blindness and rehabilitation organizationsand their umbrella groups can, and most likely, will, join your cause. Don’t forgetother AMDAI members, who will be happy to help, and who can connect you totheir constituents, putting an international face on your campaign.


PRINCIPLES OF GOOD ONLINE CAMPAIGN DESIGN

An action in a campaign is one step that you ask your supporter to take. Forexample, an action could be sending a letter. Emailing friends about yourcampaign or visiting a social networking site to join your campaign group areother possible actions you might ask your supporters to take.

The golden rule of designing a good advocacy campaign online is that youshould always ask people to do the most important action first, followed bythe next most important action, and so on. This way, if they lose interest and donot fulfill all of the actions you would like in an ideal situation, then at least youhave received the most help possible out of each person. Typically, your mostimportant actions are going to involve letter writing to your actual targets.

When you have all of your actions determined, and you know how you wouldlike to order them, write them out and number them so you have a plan for thecampaign you are building.

For example, here is a sample plan for a fictitious campaign that asks people toemail two primary targets (copying a secondary target each time).

CAMPAIGN XYZ PLAN

Action 1: Write a letter to politician A and copy organization ZAction 2: Write a letter to politician B and copy organization ZAction 3: Invite your friends to take action

>>

>>

Here are some other golden rules that apply to campaign design:

• Respect people’s privacy. Have a link to your organization’s policy sothey can read it if they choose.

• Allow them flexibility. They should be able to customize most of the letterthey send to your targets if they want to.

• Keep screen text short. Once they have entered your campaign online, theyhave already decided to help – you do not need to convince them anymore.Assume they have already read about your issue on your campaign emailor website.

These principles will be discussed in more detail in the rest of this section,where we cover specific page types for an online advocacy campaign.

Section 8:E-Advocacy

As mentioned in Section 6, e-advocacy is a relatively new and highly effectiveway of doing advocacy on the Internet.

E-advocacy software programs have databases, allowing you to contact peoplewho take part in your campaign. AMDAI has purchased the industry-leadinge-activist 3.0 software program created by Advocacy Online(www.web.advocacyonline.net) for AMDAI members.

This tutorial assumes that someone at your organization already knows howto use e-activist 3.0. If this is not the case, you may want to talk to AdvocacyOnline to schedule a remote training session for a technically minded personat your organization.

What this tutorial will cover is the many best practice principles you shouldfollow in designing an Internet campaign and writing copy to use with e-activist3.0. Try to get someone skilled in marketing, communications and/or advocacywriting to compose your copy for your e-advocacy campaign, and make surethat all of your copy is in line with your key messages.

Before allowing any e-advocacy campaign to go live, be sure to test it well tomake sure it is working correctly. You should allow at least a day for testing.

E-advocacy software programs allow you to set up, manage,and monitor an Internet campaign. The campaign will appearas if it is entirely a part of your organization’s website, eventhough the software is actually putting the pages together.

All AMDAI membershave access to a greatsoftware programcalled “e-activist 3.0”which will appear asif it is entirely a partof your organization’swebsite.

See Appendix B on

page 60 for a sample

Web Page, Social Advocacy

example on Facebook,

and email sample.


supporters to write some of the letter, or all of it, in their own words, becausepersonalized letters attract more attention. You might want to suggest ways tocustomize effectively, such as sharing their own experiences with AMD. Finally,it is a good idea to encourage people to maintain a polite and respectful tone intheir letters, because this will have a greater impact.

The template letter itself should be carefully crafted. Make sure it is short –three or four paragraphs at most. Use polite language, but make sure the letteris passionate and makes a strong case for your position. Write the letter fromthe point of view of your supporter, and give one or two of the most compellingarguments that support your cause. Some examples are: the cost of AMD togovernments and society, the needless vision loss that will result if people aredenied treatment, or the hardship they will experience if treatment is notreimbursed through a government health plan. End with a call to action, askingthe target to do something that will help to achieve your goal.

At the bottom of your letter page, you should have a submit button. Once yoursupporter has selected this button, they will have completed the action and theywill advance to the next page.

THANK YOU PAGES AND SUBSEQUENT ACTIONS

After every action, including the one after your first letter page, you willneed a page to:

• Thank supporters for taking action (this will confirm for them that thecomputer actually recognized and processed their previous action)

• Let them know you will update them with more information on the issueand the final outcome

• Ask them to take another action

If your second action is another letter page, make it clear – perhaps with aprominent headline – that they are sending a letter to a different target.

For a Spread the Word/Tell a friend page, let the supporter customize an emailto tell their friends about the campaign. Include a template email in case theywould rather send something written for them.

On your final thank you page (when you have no further actions), let thesupporter know they are finished. Thank them again for participating. You mighteven want to include a link to your organization’s home page or back to yourcampaign website, so you give them somewhere else to go.

>>

Make sure yourtemplate letteris passionate andmakes a strong casefor your position.Write the letter fromthe point of view ofyour supporter, andgive one or two ofthe most compellingarguments thatsupport your cause.

LANDING PAGE

On your landing page, people enter their contact information. The software willuse this to format their letter so that the target that receives it knows who wrote it.

Of course, you can also stay in contact with your supporters thanks to thiscontact information. You will want to stay in contact with them to update themon campaign progress (and to ask them to take further action, if needed).

You also may want to contact them in the future for something like a donationrequest, or to send them your organization’s e-newsletter. If so, include acheckbox that the supporter can “uncheck” if they choose to opt-out of futurecommunications from your organization. If a supporter unchecks this box, it isstill permissible to contact him or her in future with updates about the currentcampaign only.

Make sure your landing page has a strong headline that encourages action.Also make sure that you mark mandatory fields with an asterisk. Mandatoryfields are fields where you require the supporter to supply information (theymay not leave them blank or the software will not allow them to participate inthe campaign). If you have too many mandatory fields, you may alienate yoursupporters.

FIRST LETTER PAGE AND THE TEMPLATE LETTER

After your supporter enters contact information, they will proceed to the nextpage to send the first letter (or the only letter, if you just have one primarytarget). Sometimes, your letter page may also be the same as your landingpage – if so, the contact information appears first, and the letter will be at thebottom of the page.

When you set up e-activist 3.0 for your campaign, you will enter your target’sinformation. This way, when your supporters gets to the letter page, they willfind that the To: information (your target’s name, title, organization and address)and its From: information (their own name and address) are already populated.

Your letter page should have editable boxes for the subject line, body of theletter, and the closing (where you’d normally see “Yours sincerely,” “Yours truly,”etc.). The salutation and the signature line may even be editable. However, besure to include draft text in these boxes, so that if the person wants to simplysend your suggested letter, they can.

At the top of the letter, you should include some brief instructions for yoursupporters. Let them know why they are writing to this target. Tell them thatthey can customize the letter if desired. In fact, you should encourage your

>>

>>

Your landing page

should have a strong

headline that

encourages action.


Here is what the campaign used as an example earlier in this section would looklike, fleshed out in terms of actual pages in an online campaign:

CAMPAIGN XYZ PLAN

Page 1 – Landing page – enter contact information

Page 2 – Action 1: Write a letter to politician A and copy committee Z

Page 3 – Thank you letter for writing to A, and invitation to write to politician B

Page 4 – Action 2: Write a letter to politician B and copy committee Z

Page 5 – Thank you letter for writing to B, and invitation to tell your friendsabout the campaign

Page 6 – Action 3: Invite your friends to take action

Page 7 – Final thank you letter

Keep in mind that it is not necessary to have long or complicated campaigns.Simple campaigns, with one or two actions, often work as well as longer ones –or better.

THE THANK YOU EMAIL

The thank you e-mail is different from the thank you pages that your supportersare going to come across as they complete the actions for your campaign. Thethank you email is an automated email that e-activist 3.0 will send out to eachof your supporters every time they complete an action.

The thank you email serves three main purposes:

• Thanking your supporter once more to build an ongoing relationship• Reinforcing that the system worked and reassuring them that their letter was

sent to the correct place. E-activist 3.0 will even append a copy of their letterto the bottom of the thank you email so that your supporter can see exactlywhat was sent out.

• Encouraging your supporter to take any further action that may help you.They may not have chosen to invite friends or join a social networking groupwhile they were completing their actions, but may still choose to do thesethings when prompted again.

Your letter can also briefly reinforce your cause once more and make yoursupporter feel good about getting behind it. You may wish to include aboilerplate about your organization.

>>

e-activist 3.0 willsend an automatedthank you emailto each of yoursupporters everytime they completean action.

p. 47

NOTES:


AMDAI ADVOCACY TUTORIALp. 48 SECTION 8 REVIEW / AMDAI ADVOCACY TUTORIALSECTION 8 REVIEW /

INFORMATION FOR SPECIFIC PAGES

Landing Page

Fields to include:

Fields to be mandatory:

We have included a link to our privacy policyWe have offered an option to opt-out from future communications fromour organizationWe have a strong headline and a sense of urgency

Letter Page

We have included instructionsWe have encouraged supporters to customize, and suggested ways to do soWe have encouraged supporters to be politeWe will allow supporters to chose their own closing, subject line, etc.We have included a powerful template letter of no more than 3-4 paragraphs

Thank You Pages

We have included a sincere thank-youWe have included an invitation to next actionWe have mentioned we will keep supporters updated and let them knowfinal result

Thank You Email

We have reinforced that the supporter’s letter was sent (append originalletter if possible)We have thanked them againWe have a call to action if there is anything else we would like them to do(especially forward this email to friends)

Be Sure to Check

We plan to test our e-advocacy campaign thoroughly before going live.

p. 49

E-ADVOCACY

E-advocacy campaigns take some work to set up, some technical expertise, andcareful crafting. But once operational, they run by themselves and very quicklyconnect you with a natural support base. Here is what you need to keep in mind.

Person who will be setting up our campaign on the e-advocacy software:

Person who will be writing copy for campaign screen text and template letters:

Overview of the campaign we plan:

PAGE WHAT WILL HAPPEN THERE

1 – Landing page Enter contact information:

2 – Action 1

3 – Thank you for action 1 Thank you, and invitation to:

4 – Action 2

5 – Thank you for action 2 Thank you, and invitation to:

6 – Action 3

7 – Final thank you page Thank you, and please visit:

Section 8 Review


CAMPAIGN LAUNCH

Launch all of your campaign pieces in a coordinated way on the first day ofyour campaign.

This will be the first day you are encouraging people to take action to supportyour goal. So on the morning of your campaign launch, your campaign websiteshould go live, your e-advocacy campaign should be up and running, and yoursocial networking site, if you have one, should be made active. Make sure youhave a prominent link to your campaign website from your organization’s homepage – a large banner on your home page that is up for the duration of yourcampaign is ideal. All of these items should not go live before your launch date– otherwise, your launch will not appear organized or coordinated.

However, the adage that “if you build it, they will come” does not necessarilyapply. It is not enough to simply want people to visit your campaign website ormake phone calls or sign a petition – you actively have to promote your campaignso that people hear about it. You can promote your campaign through the media,through your campaign email, through social networking, through your staff, andthrough your critical stakeholder networks.

MEDIA

Your media release announcing the campaign should go out early in themorning on the day of your launch, and your media relations staff should spendthe rest of the day following through with journalists to make sure they receivedit. Post the release on your website, and make sure there are links to it you’reyour campaign website and social networking group.

Your launch should be billed as big news, and with some work and a bit of luck,both local and national media will cover it. It will not be every day that anorganization such as yours takes a public stand on an issue that affects healthcare and treatment in your country, and this fact alone is newsworthy.

CAMPAIGN EMAIL

You should send out your campaign email to contacts in your organization’sdatabase as soon as possible once you have launched. You might want to sendit to donors, volunteers, community partners, newsletter subscribers, peoplewith vision loss or AMD, and any other contacts you have.

CRITICAL STAKEHOLDERS

At the beginning of the launch, you can also recruit your “critical stakeholders”to help you – organizations that have their own networks of people who are likely

>> On the morning ofyour campaign launch,

your campaign websiteshould go live, youre-advocacy campaignshould be up andrunning, and yoursocial networking site,

if you have one,should be made active.

Section 9:Bringing It All Together

Things are still likely to be hectic, but running a campaign, when you areprepared for it, can also be fun.

From the launch of your campaign right through to the day it concludes, youronly purpose should be using the tools available to reach your campaigntargets, so that in the end, you can increase the likelihood of achieving yourgoal. Allocate your time and resources wisely so that the things you arechoosing to do, and the priority you give them, corresponds to their expectedimpact on your campaign targets.

In this section, we discuss different points during the campaign timeline, andwhat to do – and not to do – at each of these stages.

If you have done all of your campaign planning, gathered theresources you need, and prepared the campaign infrastructure(media materials, online advocacy campaign design, campaignemail, etc.), running your campaign should go smoothly,since at this stage everything is in place and you are simplyexecuting your plan.

Allocate your timeand resources wiselyso that the thingsyou are choosingto do, and thepriority you givethem, correspondsto their expectedimpact on yourcampaign targets.


You may even want to send two emails to your staff, one a few days before thelaunch to let them know it is coming, and a second reminder on the day thelaunch takes place.

Finally, launch day is the best time to put in place some simple measurementstrategies that will help you later when you are evaluating your campaign. Atroughly the same time at the end of each day, you should record the numberof letters that have been sent by the public for your campaign, the number ofphone calls you know the public has made to your targets, the number ofpeople who have signed your petition, and/or the number of people who havejoined your social networking group. By tracking this each day, you can see howyour supporters’ list grows over time and in response to various developments(media stories, email blasts to various groups, etc.)

THE MIDDLE OF THE CAMPAIGN

During the middle of your campaign, stay the course and keep up your efforts.Keep working at getting media coverage, at getting various stakeholder groupsto support you, at updating and monitoring your social networking group andwebsite, and at sending your campaign email out to anyone you can think of.As days go by, your list of supporters will only grow. And it will start to growexponentially as your supporters recruit other supporters, creating a viral effect.

If there is a major milestone in your campaign, you may want to let yoursupporters know, either on your campaign website or in an email blast if youare using an advocacy software program. In the middle of a short campaign,you should only go back to your supporters if there is a major development toreport. For example, during CNIB’s campaign to get a government advisorybody to recommend a treatment, one of the largest provinces in Canadadecided to reimburse that treatment on its own. This was such encouragingnews that it was definitely important to share it with the campaign supporters.

Monitor how your campaign is playing out in the media, on your social networkgroup, and in questions and comments you receive from the public by email orphone. Be sure to respond to all feedback. Make sure to respond to any criticismor inaccuracies in an honest, open manner. A media story that gives inaccurateinformation offers a good opportunity for a letter to the editor, for example.A member of the public who is suspicious of your campaign or has legitimatequestions deserves an honest response, and can often be won over to your sideif treated with respect. When you are advocating for an AMD treatment, there canbe criticism if you seem to favour one treatment over another without justification.However, if a treatment is proven and in a class of its own in terms of the qualityof life it offers people with AMD, then it is reasonable to advocate for it.

>>

Stay the course!If you keep up yourefforts during themiddle of yourcampaign, your listof supporters willonly grow. And itwill start to growexponentially as yoursupporters recruitother supporters,creating a viral effect.

to support your campaign. Ophthalmologists and optometrists’ associations,other AMDAI members, consumer groups, and other critical stakeholders you’veidentified should be encouraged to engage their own members and supporters.

SOCIAL NETWORKING

If you are doing social networking, encourage everyone who is working on yourcampaign to invite their “friends” to join your campaign group, and in turn asktheir “friends” to do the same.

YOUR STAFF

Do not forget to involve your organization’s staff in the campaign. Right atthe beginning of the launch, they should be made aware that the campaignis happening. After all, the public may call with questions, and they potentiallycould end up calling anyone at your organization. Make sure call centre andreception staff in particular are made aware of your activities. (You may alsoget lots of calls from people with AMD and their family members asking aboutthe disease and about treatment. This is a good thing – it means you arereaching your intended audience. Be sure that your frontline staff are readyto handle the extra volume of calls and questions.)

It is best if you can send out an email to all staff in your organization, not justfrontline staff, however. They all should be considered a part of the teambehind what you are doing.

Do not forget toinvolve yourorganization’s staffin the campaign andbe sure that they areready to handle theextra volume of callsand questions.

In communicating with your staff, be sure to:

• Let them know when any media release has gone out (provide a link to whereit is on your website, so they can read it)

• Let them know who is handling media for the campaign, so they can referany media calls they receive to the correct person at your organization

• Tell them who your project manager is in case they have questions aboutthe campaign.

• Tell them what your campaign goal is, why it is important to your organizationand to people with AMD, and how you are asking the public to help

• Tell them how they can help out with the campaign. Send them the campaignemail and encourage them to share it with their contacts if they feelcomfortable doing so. Invite them to join your social networking group and toask their “friends” to do the same. Ask them to visit your campaign websiteand to take action themselves in the campaign


END OF THE CAMPAIGN

When your campaign ends, you will want to notify your supporters as soon asyou can about the final decision.

If the decision is positive, you will want to share the good news and congratulateand thank them once again for making it possible.

If the news is not good, you will still want to thank them, and you should be preparedwith next steps. Will you be launching another campaign in protest, for example?

If it turns out that a decision you were expecting is delayed, you should let yoursupporters know. Send them an email and tell them when you expect to nextcontact them with further information. Your supporters should never feel as if theyare out of the loop in terms of finding out the status of your campaign goal. Keepon informing them whenever you have new information, until the time comeswhen you can give them the final decision. You should also keep your websiteand social networking group up-to-date as information becomes available, andyou should keep your staff apprised through all-staff emails.

You will need to prepare two versions of a media release to go out after the decisionis made. Anticipate a positive decision and the type of release you would sendout in that scenario, and then do the same for a negative decision. If the decisionis positive, be sure to thank the decision-makers for their judgment in the matter.

>>

A FEW DAYS TO GO

When there are just two or three business days left in your campaign, it is a goodopportunity to do one last push to get people to advocate to your targets. At thispoint, you may want to send an email blast to your supporters asking them torecruit anyone they can to your cause during the last few days of the campaign.You can also briefly report back to your supporters on your campaign successesso far – for example, how many people have taken action, major milestones orendorsements your campaign has received, and your media coverage to date.Hearing the success stories will only strengthen your supporter’s view of yourcause and organization, and encourage them to continue doing what they can.You should also remind supporters about when you expect to hear the decision,and let them know that you will update them as soon as you know the result.

It is also appropriate to send out another media release at this stage to report onyour campaign’s successes (number of letters, petition signatures, or phone callsfrom supporters – if these numbers are impressive) and any other milestonesachieved. Your goal is to have the media story ultimately encourage even moremembers of the public to support your campaign while they can. You mightwant to include quotations from some of the “ordinary people” who have alreadysupported the campaign in your release (make sure you have their permissionfirst). Your target(s) will also note media coverage about your campaign’s success.

Keep your supporters

informed all the way

through to the end of

the campaign.

>>

AMDAI ADVOCACY TUTORIALp. 56 SECTION 9 REVIEW / AMDAI ADVOCACY TUTORIALSECTION 9 REVIEW / p. 57

A FEW DAYS TO GO

Email blast to supporters to thank them for everything so far and get them tohelp with one last push. Tell them when we expect to have the result, and letthem know we will share it with themIf campaign has been successful, media release to share success story andask the public to support us in the last few days.Update staff on final leg of campaign

END OF THE CAMPAIGN

Our strategy/messages if a positive decision:

Our strategy/messages if a negative decision:

When it comes to the final decision, we have a plan to update:

Our supportersCampaign website, social network group, mediaAll staff

BRINGING IT ALL TOGETHER

When you finally bring all of your resources and infrastructure together, it can bea wonderful experience. This is where your campaign will really take flight. Butthere is still work to do, and still best practices to keep in mind. Here are somethings to consider for the deployment stage of your campaign.

LAUNCH DAY

Campaign website liveLink from website to our organization’s home pageE-advocacy campaign / phone campaign / petition campaign liveCampaign email has gone out to as many people as possibleMedia release announcing campaign has gone outMedia relations staff following upMedia release on our website and linked to from campaign website andsocial networking groupAll staff have been informed about the campaign, about media contacts,about project manager, and about how they can help. Call centre/receptionstaff have been notified in particular.All staff have been sent the campaign email and asked to send it to theircontacts if they feel comfortable doing so

ONGOING PROMOTION/MIDDLE OF THE CAMPAIGN

At least one person monitoring social networking groupCritical stakeholder groups getting word out to their membersOngoing media relationsOngoing efforts to get the campaign email to more groupsOngoing updates to campaign website and social networking groupSomeone is recording daily results: # of letters sent, petition signatures,phone calls made, members on social networking groupConsidering any big news for an email blast to our group of supporters

Section 9 Review


If you can, you should also look at campaigns by other organizations similarto yours for comparison purposes. How do your results compare with theirs?

Don’t forget to gather some of your materials for your report. Gather the textused for your media, marketing, and campaign advocacy materials. Keepcopies of important letters sent and received. Get a media report and clippingsfrom stories. And put together a graph to get an idea of how your supporternumbers grew during the course of the campaign. Are there any surprises onthat graph? Can you make any reasonable guesses about why there mighthave been spikes of support on any particular dates?

After you have all of this information, you can drill down to an honest evaluation.What forces or factors made it difficult to achieve your goal? Were they out ofyour control, or was there something you could have done to mitigate them?What factors made it easy to achieve your goal? What really worked? What didyou do a great job on? What would you do differently next time – what would youdo more or less of in a future campaign? And what sort of campaign would youlike to do next?

Section 10:Measuring Your Success

Your ultimate guideline in your evaluation should be your initial campaign goal.Did you succeed? Did you achieve your goal, but with restrictions or problemsyou did not anticipate? Or was your goal out of reach?

You should record what happened in your campaign:• Who was involved in your campaign?• What happened when? What was the timeline like?• What were your campaign goals and strategies (You can use the review

sections of this tutorial as a guide)• How many letters/emails/phone calls/petitions did you get?• How many supporters were there?• How many joined your social networking group, if you had one? How active

were the members on the group?• What critical stakeholders (individuals or groups) supported you? How?

How did you capitalize on their support?• How did you capitalize on any major milestones?• How did you capitalize on positive media coverage?• How many page views did your campaign website receive?• How many media impressions did your campaign generate? How was the

coverage in terms of quality? What sort of outlets covered your story?How did you respond to the media?

• How many calls did your organization receive from people concerned aboutthe issue or about AMD?

• What did your supporters say in their letters, calls, and emails to yourorganization? What did they say in their letters to your targets?

• Did your staff and volunteers support the campaign?

About a month or two after your campaign is over, it is timeto write an evaluation report about your activities. This willhelp you to consolidate what you learned so you can applythose lessons to your next advocacy effort.

Evaluating yourefforts will help youand others applyvaluable lessons tofuture campaigns.


MEASURING YOUR SUCCESS

Creating an evaluation report will ensure that the lessons you learned fromyour campaign will inform your future AMD advocacy work. It will also providea historical record, give you time for honest reflection about your campaign,and provide a resource for your organization’s management and futurecampaign organizers.

Person conducting our evaluation report (usually the Project Manager):

Report to be submitted to:

Report checklist

Campaign problem, goals, scope, targets, overall resultSummary of resources involved, including staff involvementCampaign timeline and milestonesHow the campaign played out: how we responded to, and capitalized on,media coverage and major campaign milestones.Statistics: campaign website visits; letters, emails, phone calls, petitionsignatures received; social networking group participants; and total numbersof supportersCritical stakeholder involvementMedia coverage: quality and number of media impressionsQuantity and quality of supporter participation (provide some examples offeedback/involvement from supporters if possible)Staff and volunteer involvement from our organizationComparison to similar campaigns by other organizationsGraph of supporter numbers by date, and analysisSample materials: media materials, campaign email, website text, advocacysoftware text and letters, important critical stakeholder and target letters sentand received, media clippingsHonest overall evaluation: Were we successful? Why or why not? Whatreally worked, and what did not? What would we do differently next time?

Section 10 Review

Use this checklist to

build an honest

evaluationof your

activities, challenges,

and successes.

p. 61

NOTES:


AMDAI ADVOCACY TUTORIALp. 62 APPENDIX A / p. 63AMDAI ADVOCACY TUTORIALAPPENDIX A /

RNIB CAMPAIGN SAMPLE LETTER

Input and Action Needed Urgently!

British AMD patients facing draconian situation – cruel watchdog is condemning20,000.

Dear Friend:

People with age-related macular degeneration (AMD) are facing a draconiansituation in England and Wales right now, and your INPUT AND ACTION ISNEEDED URGENTLY!

The health watchdog in England and Wales (National Institute for Health andClinical Excellence, NICE) issued stringent preliminary guidance that will denyproven effective anti-VEGF treatments to 80 percent of patients with wet AMD inEngland and Wales. Just one in five "lucky" patients will be offered treatment -but only after they’ve gone blind in one eye. If this ill-considered decision is notover-turned very soon, over 20,000 people a year will be denied access to theseimportant anti-VEGF treatments and will suffer from degenerating eyesight andpotential blindness in the UK.

Our colleagues in the UK - RNIB and the Macular Disease Society - have publiclydeclared their outrage at this decision, and have mounted a massive counterattack. YOUR HELP IS NEEDED IN THIS CAMPAIGN!

• What you must do by July 12, 2007• What to reference in your letter of protest• Sample letters of protest sent by others• What you can do to help prevent blindness

Your help is needed in this campaign!

Here’s what you must do:

NICE have said: “we are very keen to hear from people with AMD and those whocare for them, and as always, our committee will take these views into accountwhen making final recommendations.” PLEASE VOICE YOUR OUTRAGE ATTHIS PRELIMINARY DECISION. Please click on this link to send an email/letterof protest to NICE: [email protected]. Here is the postal address if you prefer tosend a print letter:

>>SAMPLE TEMPLATE SUPPORTER LETTER USED IN CNIB’SRIGHT TO SIGHT CAMPAIGN

Email Subject Line:Please help prevent needless blindness for tens of thousands of Canadians

Dear Minister ,

I have recently learned that Canada's Common Drug Review (CDR) has issueda negative decision regarding a breakthrough treatment for wet AMD.

I am deeply concerned that tens of thousands of Canadians will not be able toafford Lucentis and go blind as a result, or that many others will have to makeextraordinary sacrifices to pay for an essential treatment – the only one clinicallyproven to actually restore vision for many people with wet AMD. Canadashouldn't be a country where only the wealthy have the right to sight.

Wet AMD has a devastating impact on 100,000 Canadians and their families, andthat number will double in 25 years. The cost of vision loss in Canada, much of itdriven by wet AMD, is estimated at $7.9 billion annually in direct and indirect healthcare costs – on par with diseases such as diabetes. This does not even take intoconsideration the value of a person's sight or the simple activities that areimpossible without it, such as reading, driving, or seeing the face of a loved one.

Given all of this, it is imperative that Lucentis be made available to all Canadians,regardless of their ability to pay.

CDR will be reconsidering its decision on January 23, 2008. There is still anotherchance to do the right thing. I urge you to step in to let CDR know that [ NAMEOF PROVINCE INSERTED HERE ] would like to see Lucentis recommended forgovernment health plans.

You can play a leadership role on this issue, and I thank you for seizingthis opportunity.

Yours sincerely,

[ SUPPORTER’S NAME AND ADDRESS ]

CC: [ COMMON DRUG REVIEW ]

This letter was sentfrom supporters totheir provincialhealth ministers.

>>

p. 65AMDAI ADVOCACY TUTORIALAPPENDIX B /

Sample Email: CNIB’s Right to Sight EmailSubject Line: Help prevent needless blindness in Canada before Jan. 23

AMDAI ADVOCACY TUTORIALp. 64

Right to Sight Facebook Image

E-ADVOCACY SAMPLES

Right to Sight Website: www.righttosight.ca

>>

APPENDIX B /

AMDAI ADVOCACY TUTORIALp. 66 p. 67AMDAI ADVOCACY TUTORIALAPPENDIX C /

From: CNIB [mailto:[email protected]]Subject: Common Drug Review Recommends Lucentis

Dear Right to Sight Supporter:

You made a difference!

Today, the Common Drug Review (CDR) published its final recommendation forLucentis – and we are pleased to let you know that the recommendation waspositive, overturning CDRs initial decision.

This is a good step forward for people with wet AMD in Canada. It means CDRis officially recommending that Canadas provincial and territorial health plansreimburse Lucentis, the first and only treatment clinically proven in many casesto restore vision lost as a result of wet age-related macular degeneration (AMD)– a big change from CDRs initial negative recommendation.

As you know, Canadas two largest provinces, Ontario and Quebec, are alreadyreimbursing Lucentis. We are hopeful that as a result of todays announcement,the remaining provinces and territories will begin reviewing Lucentis, and willinclude it in their own health plans without delay. There is good precedent for this,as typically provincial and territorial drug plans follow CDR recommendationsmore than 90% of the time. All Canadians deserve what those in Quebec andOntario currently enjoy.

Although CDRs recommendation was positive, it also included suggestedrestrictions including that Lucentis should not be funded in combination withverteporfin (Visudyne – another wet AMD treatment) and that drug plan coverageshould be limited to a maximum of 15 vials per patient used to treat the betterseeing affected eye.

CNIB understands the need for criteria to balance the economic impact ofincluding a treatment in government health plans, but will also urge provincialand territorial health ministers to consider coverage of the treatment for peoplewho get wet AMD in both eyes when their sight can be saved.

For more information about todays announcement, please see CDRs drugdatabase. Scroll down to Ranibizumab, which is the generic name of Lucentis.You may also want to read CNIBs news release congratulating CDR on its decision.

We will be sure to let you know if there are other opportunities to help with thisissue in future, and we will keep www.righttosight.ca updated with the latestinformation available. If you know someone who would like to be added to thisemail list at any time, please refer them to www.righttosight.ca.

SAMPLE LETTER TO SUPPORTERS TOUTING SUCCESS

Mr. Andrew Dillon, CEONational Institute for Health and Clinical ExcellenceMidCity Place, 71 High HolbornLondon WC1V 6NAPhone +44 (0) 20 7067 5800

THE DEADLINE FOR COMMENTS IS JULY 12, 2007, SO PLEASE ACT NOW.

In your email/letter please reference:

• That your country has approved and reimbursed anti-VEGF treatments andyou are shocked at the lack of concern for people facing blindness in England,Northern Ireland and Wales.

• NICE acknowledges the efficacy and ground-breaking vision improvementsseen in patients treated with anti-VEGF treatments. Briefly highlight personalstories – insightful, real life quotes are important to communicate.

• The cost effectiveness of AMD treatments, and improved quality of life forpeople with AMD is clearly documented by multiple studies. The costs toindividuals and society of allowing people to go blind are extensive.

• It is inhumane to deny treatment to these patients – some of whom are themost fragile in our societies – when treatment is available.

• TIMELY ACCESS to treatment is the right of all who will be helped by thetreatment, and is imperative due to the rapid deterioration of sight in wetAMD patients.

• Only retinal specialists can decide the timing of treatment and the medicinesthat help the patient. When a medicine has been tested and found to be safe,then the final decision as to what is used is between doctor and patient. Makinghealth decisions on any other basis is an invasion of the most basic relationshipa patient can have, that is the trust that they will be well cared for by a physicianwho may use all the tools at their disposal for the good of the patient.

YOUR HELP IS NEEDED IN THIS ESSENTIAL SIGHT-SAVING BATTLE!

There is no reason why people with AMD should be left to go blind when provenanti-VEGF treatments are available. Furthermore, there is no reason why peoplein England, Northern Ireland and Wales should not get what is readily availablein, for example, Scotland, Australia and Switzerland – namely affordable accessto the treatments which will prevent blindness.

We have an opportunity and a responsibility to reverse an ill-informed decision,and bring some hope and help to those who live with AMD.

GET INVOLVED NOW! SEND A LETTER TO [email protected]

>>

APPENDIX C /

AMDAI ADVOCACY TUTORIALp. 68

We believe that our letter writing campaign – resulting in 8,000 letters sent togovernment and CDR officials from supporters like you – helped to highlight theimportance of this issue for Canadians, ensuring that it was given the carefulconsideration it deserved.

Thank you once again for your tremendous support of the right to sight. Youractions ultimately made a big difference. You can be very proud of what you havehelped to achieve today on behalf of all Canadians who have AMD or are at riskof it in future.

Best wishes,CNIB

APPENDIX C / AMDAI ADVOCACY TUTORIAL p. 69NOTES /

NOTES:

FOR MORE INFORMATION:

AMD Alliance International1929 Bayview AvenueToronto, ON M4G 3E8 Canada1.877.AMD.7171 (1.877.263.7171)416.480.7641www.amdalliance.org

+44 (0)115 935 2100

Nottingham NG1 5FS

TollHouse Hill

6th Floor, City Gate East

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