Suzie-Ann Bakker
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Try these 5 tips to strengthen your patient advocacy effort

People using design thinking to create a strategy
Successful advocacy starts with successful planning. Whether you are focusing on one specific aspect or want to reach a broad audience, planning is key in reaching predefined goals and measure success. But how do you start a patient advocacy effort?

The following steps will help you set the groundwork on which to build and maximise your chances of success. In the Share4Rare Toolkit for Patient Advocacy, we explain exactly how to do this practice to upgrade your patient advocacy effort. Here is how:

1. Define your research agenda

Focus on what your message will be and take a look around to see who else is doing something similar to what you are. While it is great to use resources already available, it is also a very good idea to take a little time out to look deeper into research, especially facts and figures. Then, draw your learnings and combine your insights to a fool proof strategy.

2. Set up your communication channels

Communication is an essential part of advocacy. Various activities like educating patients and the public, policy work and multi-stakeholder collaborations are in the end forms of communication. Successful communication is the key ingredient to turn a good idea into successful advocacy.

3. Support your claims with research

Supporting advocacy claims with evidence will greatly increase your chances of being heard. You can use evidence published by other trustworthy sources and/or generate evidence yourself. The aim of the Shara4Rare platform is to help you generate high-quality evidence to support your advocacy work.

4. Join trainings and educational programs

Some countries have training programmes which are specifically designed for patient advocacy. In Europe, the best-known programmes for rare diseases can be found at the EURORDIS Open Academy and European Patient Academy - EUPATI, which cover all diseases and are focused on increasing the capacity and capability of patients to understand and contribute to medicines research and development.

5. Use templates

You do not have to reinvent the wheel when creating your organization! There are a multitude of high-quality tools and templates online that can help define your strategy, communication, research and management. From writing a cover story to a SWOT analysis, Share4Rare worked with established patient organizations to curate useful templates.

The bottom line

Altogether, the Share4Rare Toolkit for Patient Advocacy allows you to not only pay attention to the creation of the strategy, but to measure your success and next steps. It can help strengthen your focus and work on things that matter to your organization.


Patient advocacy