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2020 is expected to be an active year for chronic disease advocates, legislators and patient advocacy organizations. The Chronic Disease Coalition speaks with patient advocates nearly every day about the challenges they face and the work they do to help others. We know that patients face discrimination at every turn – at work, at school or fighting against insurance companies. One of our organizational goals for 2020 is to continue to listen to patients. We want to hear and understand the obstacles patients face so they can achieve their goals. We strive to be an organization that elevates the patient voice and helps pass patient focused legislation at the state and federal level. Advocacy plays a key role in achieving these goals. Below are 20 advocacy tips to help you join the fight for patient rights and make your voice heard in 2020:
  1. Become – and stay – informed. Stay up to date on the issues you care about. Remaining aware of important issues that impact you on a day-to-day basis will help you know when to act and who to speak with. We recommend subscribing to newsletters to help stay current.
  2. Practice your elevator pitch. When it’s time to speak to a decision maker (such as a legislator), another patient, or a medical professional about an issue, you may only have a minute to capture their attention and make your point. Attention is hard to grab and even harder to keep. Our advice? Remember and outline three key points that you want your audience to remember.
  3. Know your ask. Have a clear call-to-action to ask of your friends, family and elected officials.
  4. Introduce yourself to lawmakers. Your local, state and federal lawmakers need to hear from their constituents about issues that matter to them. You can easily schedule a meeting with a staffer to discuss your disease and the obstacles you face.
  5. Identify your type of action. Are you more confident through email, phone call or in person? Pick the type of action that best suits you and get started – calling an elected official, attending town hall meetings, visiting your legislator’s office, signing a petition or joining a community advisory group are just some of the ways to take action!
  6. Always be honest. Follow the words of French writer Jean Giraudoux, “The secret to success is sincerity.”
  7. Determine your story. Figure out how you and your cause fit together. Make sure you can express where your passion is coming from and then share your story with the world online, in person, in blogs, in the news or through advocacy organizations.
  8. Be confident. Our tip? Fake it ‘til you make it!
  9. Network. Relationships are key to successful advocacy. By joining groups and introducing yourself to new people and new organizations, you will connect with decision makers and influencers who will help promote your story and your message. (You can start by joining the CDC!)
  10. Offer yourself as a resource. Become a subject matter expert, or SME. (Promote yourself as a patient who has learned to fight insurance companies by thinking of solutions outside the box, or as someone who has learned how to communicate effectively with doctors and other medical experts.) When speaking with patients, legislators or other advocates, referring to yourself as a subject matter expert will help build trust.
  11. Learn about the community you are advocating for. Even if you’re speaking from experience, knowing your community will help you learn how to be a better advocate. Our experience tells us that the more connected you are to your community, the better advocate you become.
  12. Ask questions. The art of asking a good question can take a long time to perfect. Practice asking questions by asking patients about their experience, clarifying a confusing statement or asking for additional information about a subject.
  13. Document EVERYTHING. We have made it a habit to keep track of calls with patients and other organizations, and patients often tell us that they have made it a habit to document and keep records when it comes to working with a doctor, pharmacy and, especially, insurance companies. Keeping track of every document, email and voicemail will allow you to reference a conversation that may help you get a claim approved.
  14. Know how, and when, to follow up. Following up with patients and organizations lets them know you’re interested in continuing to work with them. Be persistent, but respectful. Whether it’s a simple thank you note, or a chance to remind someone of their commitments, stay connected.
  15. Learn the art of social media. Using Facebook, Twitter and Instagram is a great way to connect with your elected officials and build a base of support for your cause.
  16. Create advocacy-specific social media accounts. If you’re looking to become a more professional patient advocate, consider creating a separate social media account. This may help build your brand as a resource and a SME.
  17. Learn how to create content - Even if you know your issue inside and out, communicating it to others in an interesting and informative manner can be difficult. Using graphic creators and other programs like Canva can help you create stunning images with clear messaging in order to build your advocacy platform and inform your followers.
  18. Reliability is everything. Being a reliable advocate means responding to emails, joining calls you have RSVP’d yes to, and following up with people you connect with.
  19. Use specific hashtags. Hashtags have entered the social networking field in the recent decade and utilizing them properly can help categorize your public advocacy materials and drive attention to your issue on social media. Know which hashtags are being used by key advocacy organizations and create specific hashtags to help reach your audience.
  20. Have fun. Advocating can be hard and exhausting work, and undertaking social or political change takes time, so enjoying what you do is paramount in fostering long term change. Remember, your passion will shine through in all that you do.