Turning passion into meaningful policy change
Advocacy can transform the experiences of people affected by retinal conditions into meaningful action.
Retina International’s Advocacy Toolkit provides a practical framework to support individuals and organisations in developing effective advocacy strategies – from identifying priorities and gathering evidence to engaging decision-makers and measuring impact.
Designed for the global retina community
This toolkit supports advocates working across areas, including:
- Research
- Access to treatments
- Healthcare services
- Patient involvement
- Policy development
- Awareness and education
Advocacy can sometimes feel complex or inaccessible. This toolkit breaks the process into practical steps, helping communities become confident and effective agents of change.
Think globally. Act locally.
Every community faces different challenges, but the principles of effective advocacy remain consistent:
- Understand the issue
- Build evidence
- Engage the right people
- Create a clear strategy
- Take action
- Measure progress
Step 1: Pick Your Battle
Feasibility: Can policy action address this issue?
Consider:
- Is there a realistic policy solution?
- Is this the right time to advocate?
- Are decision-makers able to influence this issue?
Alignment: Does this issue connect with your mission?
Consider:
- Does it reflect the needs of your community?
- Does it align with your organisation’s goals?
Impact: What difference would change make?
Consider:
- Who would benefit?
- How many people could be affected?
- What outcomes could improve?
Capacity: Do you have the resources needed?
Consider:
- Skills
- Time
- Funding
- Partnerships
- Community support
Engage Your Community
The strongest advocacy campaigns begin by listening.
Ask:
- What matters most to the people you represent?
- What barriers do they experience?
- What change would make the biggest difference?
Step 2: Do Your Research
Know the system you want to influence
In order to be able to advocate for a change in policy, it is firstly essential to know the current state of play.
A regulatory overview is an analysis of all the existing laws that are relevant to your cause. Depending on where you are from, there may be local, state, federal, national, and/or international laws to consider.
Some useful information to gather about existing laws include:
- When was the law published?
- When will the law be changed/amended/revised?
- Which government department/body is responsible for drafting the law?
- Who is in charge of that department/body?
- Which institution can challenge this law once implemented? (ECJ, National Courts, etc.)
This task in itself can be monumental, and sometimes it may be prudent to ask for expert help. There are professional bodies, companies, institutes, and other charities in different disease areas of societal groups who have experience that may be transferable to your particular advocacy issue.
While societal groups and charities are often willing to help, you may be put off asking for help from a for-profit company due to cost. Do not let this put you off as it is possible to ask for pro bono assistance from experts, many corporations and institutions offer assistance and advice as part of their Corporate and Social Responsibility (CSR) programmes. Some have listed the areas of interest on their websites and so it is always worth checking this as a possibility.
Existing Data
In addition to existing policy, make sure that you are up to date on studies and findings that will support your argument. Sources of these may include:
- Experimental research findings – qualitative or quantitative
- Systematic or rapid reviews and meta analyses
- National or international policy or programme evaluations
- Existing statistics – data from patient registries, census data, OECD figures etc.
- Consensus expert opinion
- Stakeholder consultations
- Testimonials or case studies
- Costings of policy options
It is also important to be aware of any data that might conflict with your policy proposal. Be prepared to defend your argument and address these issues.
Generating evidence
In some cases, the evidence you need in order to best argue your case might not even exist. Here, conducting your own research, and generating the necessary data may be a viable and important option.
Here are some tips when setting about conducting your own research:
- Familiarise yourself with the issue as much as possible. Discuss with all stakeholders and develop a clear understanding of the evidence gap.
- Assess and prioritise the value of existing evidence.
- Involve the communities (usually patients) that the outcomes of the research will impact, as soon as is reasonably possible
- If your research project is quite large, consider creating a steering committee, with representation from key stakeholder groups.
- Develop your research question and ensure that the project design will appropriately address your question.
- Identify your research participants, and decide on any inclusion or exclusion criteria.
- Give consideration to all ethical matters
- Identify potential collaborators.
- Prepare a budget and consider funding
- Plan for how you will evaluate the success of your research project and its impact on your advocacy.
Generating New Evidence
Filling the evidence gaps
Sometimes the information needed to support advocacy does not yet exist.
Generating your own evidence can strengthen your campaign.
Consider:
Define the evidence gap
What information is missing?
Engage stakeholders
Include:
- Patients
- Researchers
- Healthcare professionals
- Community organisations
Develop your research approach
Consider:
- Research question
- Participants
- Ethics
- Funding
- Evaluation methods
Step 3: Map Your Stakeholders
Some important players to consider
Policy & Decision-makers: local, national, international; these individuals should be your main target as they have the direct power to implement policy change.
Allies: other NGOs, learned societies, and experts who are aligned with your cause, and may even be open to coalition. The more groups that support a call to action gives it more chance of success.
Influencers: non-expert parties or individuals who may influence the outcome by direct/indirect or formal/non-formal means; e.g. patient community, scientific journals, industry.
Opponents: those who may resist and oppose the change that you are proposing. Remember that if a party does not appear to agree with your advocacy ask, it does not mean you should not engage. Understanding their perspective is always important and can help shape a better approach.
Benefits of Stakeholder mapping
- Allows you to identify parties/individuals on whom to focus your campaign efforts.
- Crucial for building coalitions, and elevating your profile(s) as advocates.
- More efficient strategy building, less duplication of effort
- Get creative; is there an avenue here that you haven’t considered before?
Support vs. Influence matrix
Once you have identified your stakeholders, you can “map” them according to their level of support and influence using the Matrix described below.
For this you can use a 2 dimensional graph, with level of support for change along the horizontal x-axis, and level of influence in creating change along the vertical y-axis. Stakeholders can be placed appropriately in the following quadrants: Supports change and has high influence, supports change and has low level of influence, opposes change and has high level of influence, or opposes change and has low level of influence.
Of these four quadrants, those who support change and have high influence are considered Key Stakeholders – you should manage your relationships with these parties closely, and form alliances where possible. Those who support change but have lower influence should be kept well informed of developments, via newsletters or social media. Those who have high influence but oppose change should be monitored, as their activities may impact yours. Finally, those who oppose change and have low influence may be ignored.
Step 4: Create Your Advocacy Plan
Learn From Others
We exist in a rich network of charities, non-profits, and NGOs, who are more than often readily eager to share their knowledge and experience with their own advocacy strategy development. Is there a particular campaign that you admire? Why not reach out to the team who developed it and learn from their approach? Understanding what did and didn’t work for others enables your organisation to use your valuable time and resources effectively.
Better Together: Assembling Coalitions
A coalition is a temporary alliance of distinct parties, persons, or states for joint action. Coalitions allow you to broaden your support base, pool your resources and expertise, and leverage your organisational strengths, respectively. While coalitions are crucially important, it is also a big task to build an effective one. When assembling your own coalition, consider some of the following:
Attributes of Effective Coalition Members:
- Willingness and ability to work in a collaborative manner
- Clear understanding of what they can offer (e.g., time, relationships, reputation)
- Clear understanding of what their needs and requirements in the coalition
- Willingness to share resources and power
- Ability to identify creative solutions to problems
- Ability to address conflict constructively
- Sufficient staffing to ensure timely decision-making and task completion
Source: What Makes an Effective Coalition? Evidence-Based Indicators of Success. TCC Group. March 2011.
Building Consensus: Finding common ground
Advocacy is a long process. In many cases, you may find that the most time consuming and challenging processes is that of building consensus amongst your stakeholders or coalition partners. Everyone has different ideas and priorities, and trying to meet as many needs as possible is no small feat.
- When engaging in this process, start with a clear and defined introduction of the issue.
- Invite all parties or individuals to express their needs and priorities before discussing a solution.
- Explore all solution options. Weigh up the pros and cons of each suggestion.
- Work together to converge on a proposal that works for everyone.
- Be prepared to compromise, however, have a clear understanding of your own non-negotiables. Present your case, and use the data that you have compiled in your research to support you.
Building consensus helps to create a sense of shared power, develop win-win solutions, and ensure that everyone’s voice and perspective is heard and respected.
An excellent resource for facilitating this process can be found at:https://seedsforchange.org.uk/shortconsensus
SMART Goals
Now that you have consensus on what you are trying to achieve, the next step here is to set some clear goals that will guide you through your strategy. These goals should be SMART goals, where SMART is an acronym for:
- Specific
- Measurable
- Achievable
- Relevant
- Time-bound
Specific: A specific goal is one that is clear and unambiguous. We know exactly who is involved and what the purpose is.
Measurable: Decide how you are going to measure your progress or the success of this goal.
Achievable: The goal should be realistic, it should be likely that you will be successful with regard to timeline, capacity, etc.
Relevant: Each goal should advance you towards implementing the change you seek.
Time-bound: Apply deadlines that will keep you on track.
Pick your lobbying avenues and tools
Now that you have defined your SMART goals, decide exactly how you are going take action.
The Legislative Cycle
Firstly, however, you will need to consider what stage of the legislative cycle the law you are trying to change is currently at, as this will affect your level of influence in policy development. The legislative cycle generally follows the following steps:
- Concept: An agenda or plan for a certain law has been established
- Proposal: A legislative proposal is drafted and developed
- Adoption: The proposal is passed and written into law
- Implementation: The law is then carried out in society
- Evaluation: The law in practice is reviewed
It is important to note that your level of direct influence on policy change is highest in the planning stages, i.e. before the law is drafted.
Examples of Lobbying Avenues & Tools
There are 4 main kinds of lobbying avenues: Administrative, Legislative, Campaign, and Judicial.
Deciding on the most appropriate lobbying avenue will depend on the stage at which the law is at in the legislative cycle, as discussed in the previous section. It is encouraged to plan to use more than one avenue, as this will increase your chance of success.
The different tools associated with each of these avenues are outlined in the template below:
| Cause/Issue: | The problem you are trying to solve |
| Goal: | What outcome are you looking for at this stage of your advocacy strategy? |
| Avenue | Tool(s) |
| Administrative | Ombudsman complaints, Freedom of Information Act requests |
| Legislative | Influencing legislative outcomes through public consultation fora |
| Campaign | Petitions, communications, contacting politicians |
| Judicial
|
Legal challenge |
Step 5: Take Action
Share your message effectively
When designing your communications strategy, give thought to the following questions:
- Audience: WHO is the target audience?
- Content: WHAT is the most important information to convey?
- Timeline: WHEN does this information need to be shared?
- Context: WHERE will the information be shared?
- Purpose: WHY am I sharing this information?
- Design: HOW can I communicate this information in an interesting and accessible way?
Effective Advocacy Communication
Whether it is a speech, a press release, a leaflet, or social media post, you may want to consider the following to ensure your communications engage and captivate your audience:
- Use a variety of communication methods; the more ways your audience engages with your message, the more likely they are to remember it.
- When communicating through written or spoken means, make sure your content is Clear, Persuasive, & Interesting.
- Statistics are powerful, but if you use too many, they lose their impact. Stick to the really important ones.
- Similarly, anecdotes and personal stories can humanise the issue, but must be backed up with solid data and arguments.
- Social and Digital Media are becoming more and more important. Much more than words are needed to communicate with your audience on these platforms. If you are interested in learning about ways to enhance your multimedia engagement/impact, click here to learn more about Mayer’s 9 Principles of Multimedia Learning.
- Most social media platforms (Twitter, Facebook, LinkedIn etc.) and email marketing platforms (Mailchimp) have analytics built in. Familiarise yourself with the different features available, and routinely check to see what is resonating with your audience.
Meeting Decision-Makers: Preparing for advocacy meetings
Congratulations! You have successfully landed a meeting with your representative. Now what?
Before the meeting:
- Prepare! Decide on the following two things:
- Key Message – What is the essential information you wish to convey?
- Key Ask – What can this person do for you?
- It may be helpful to send a brief document in advance, outlining the key facts and figures, to set the stage and establish context for your discussion.
- Put yourself in their shoes. Ask yourself the following questions:
- Why should they be interested in my issue?
- What is there to gain from their perspective?
- Is there something I can offer to them?
During the meeting:
- Give a brief overview of the issue.
- State why you believe this person is well-placed to support you.
- Propose your solution briefly.
- Introduce any coalitions/partnerships you have created.
- Leave the meeting with a pending task; e.g. promise to follow-up via email with a particular document, piece of advice, or contact. This is a good excuse to continue contact after the meeting
After the meeting
- Follow up, multiple times if necessary. Politicians have many demands on their time, so don’t be afraid to put your issue back at the top of their inbox!
Step 6: Monitor & Evaluate
Consistently monitor the state of play
Stay up-to-date on developments relevant to your advocacy to identify potential opportunities and challenges.
- Create a Google Alert to check for new relevant documents being published
- Freedom of Information Act requests to access official documents and gain insight into developments.
- Keep an eye on how are new policies are being implemented; are promises being kept?
Evaluate your own campaign
When creating your SMART goals, it is important to consider how you are going to measure your progress, both during and at the end of the campaign. Take some time to integrate Key Performance Indicators into your campaign. Two kinds of KPI’s that may be useful are Process KPI’s and Outcome KPI’s
Process KPIs: Focus on the means, not the result
Examples:
- How many people / stakeholders you met
- Impact of Communications outputs – Social Media reach, google analytics
- Workflow efficiency
Outcome KPIs: Focus on the ends – the concrete outcome of your campaign
Examples:
- Results: Adoption of a policy goal into a bill
- Behaviour: Increase in political interest/support
- Increased awareness, change of conversation
Practical tools to support your advocacy journey
Retina International Advocacy Toolkit (PDF)
This comprehensive resource has been designed to provide a framework for creating and implementing advocacy strategies – from picking your particular battle, gathering & generating the information (data) to support it, to deciding on the most effective lobbying avenues available to you.
Retina International Advocacy Toolkit (Word Format)
This comprehensive resource has been designed to provide a framework for creating and implementing advocacy strategies – from picking your particular battle, gathering & generating the information (data) to support it, to deciding on the most effective lobbying avenues available to you.
Retina International Age-related Macular Degeneration (AMD) Advocacy Task Force
This RI task force aimed to develop consensus on policy priorities for AMD across three countries, identifying opportunities for collaboration and action at local, regional and global levels. Its deliverable was a set of policy recommendations for people living with AMD.
Share4Rare toolkit for patient advocacy
The Share4Rare advocacy toolkit is to develop a living resource that grows with the needs and interests of the Share4Rare community and that incorporates professional-grade insights, tools and methods, together with suitable ‘how-to’ introductions and downloadable templates.
The European Guide to Citizen Lobbying
This practical booklet will show you the resources available to those who want to start a lobbying action.
Discover the citizen lobbying guide and the different channels you can choose to make your voice heard.
Rare 2030: Meeting Your MEP
Rare 2030 Action is a campaign for a European Action Plan on rare diseases to ensure that no person living with a rare disease is left behind by 2030. This booklet refers to Rare Disease Week 2021, but the points are still actionable and applicable.
Evidence for Advocacy: A Practical Guide
Focused on advocacy through a research lens, the guide highlights the power of taking an evidence-informed approach to support advocacy campaigns and to guide efforts to improve health.
Global Health Advocacy Incubator
Advocacy Action Guide provides a roadmap for planning an advocacy campaign, with tools, tactics and lessons learned to help you along the way. Based on GHAI’s experience securing public health advocacy successes in every region of the world, the approach outlined in our Advocacy Action Guide lays out four phases of effective advocacy. Each phase includes detailed steps with case studies, templates and guidance on how to navigate through each step successfully.
ARVO Advocacy Toolkits
The policymaking process varies greatly by country, but with the right tools and preparation, ARVO members in any country can advocate for advancing and preserving vision research. ARVO’s International Advocacy Toolkits enable members to advocate for research funding in their home countries.
Seeds For Change What is Direct Action Guide
Direct action is a powerful political tool. It involves using your own activities to meet your goals, rather than trying to achieve change via lobbying or voting.
This guide covers the key things you need to consider in order to plan an effective action: your strategy, how you will take care of yourselves as a group, practicalities like logistics and roles, and legal considerations.
The California Endowment: What Makes an Effective Coalition? Evidence-Based Indicators of Success
This paper skirts two important aspects of coalitions: how/when to form them (strategy decision) and differences between types of coalitions (nuance).
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