Telling your story: The POWER of the Patient’s Voice Andrea Baer, MS, Director of Patient Advocacy

Be a Voice for the Mission Be able to speak about them Tell your story Be a Voice for the Mission Know the 5 Priorities Be able to speak about them Build relationships Get involved

Your Story

You could write a book?…..Don’t Your Elevator Speech: 30 second story: Practice don’t perform Don’t use acronyms: Keep it simple Know your audience: What to share, how much to share Have an ask: donations? volunteers? policy support?

Be a voice for the mission Tell your Story Be a voice for the mission

Mended Hearts Talking Points Mended Hearts is the largest peer-to-peer heart patient support network in the world Mended Hearts has been offering hope and support for 65 years, visiting more than 200,000 patients every year Mended Hearts provides education, support and hope to all types of heart patients and their families Mended Hearts has 300 chapters and groups in North America, serving 460+ hospitals

Telling Your Story Newspaper Articles, Letters to the Editor, and Television and Radio Social Media Health professionals/Local organizations Engage with your Members of Congress Legislative Action Alerts

Telling Your Story April 8, 2016 March 3, 2016 April 10, 2016 We see examples of Mended Hearts patients sharing their story and our mission with their local news outlets. These three stories are just from the last two months. April 8, 2016 March 3, 2016 April 10, 2016

Social Media /Mended Little Hearts National Follow us! Like us! /MendedHearts /Mended Little Hearts National @MendedHearts @MLH_CHD Share our posts or create your own Mended Hearts-related content!

Engage with Policy Advocacy! Find Your Representative Engage them on social media Ask for a meeting at their District office Build a relationship! Mended Hearts will send Action Alerts. Participate! Share! Get Involved! The power of legislative action alerts comes from many advocates sending the same important message

Be able to speak about them Know the 5 Priorities Be able to speak about them

Know the 5 Priorities Access to Innovative Cardiovascular Disease Treatments And Devices 2. Medication Adherence and Therapy Management 3. Access to Cardiac Rehabilitation 4. Reduce Racial and Ethnic Disparities In CHD 5. Access to Innovative Pediatric Cardiovascular Devices and Treatments

Heart Advocacy Mended Hearts advocacy focuses on these five priorities We work to “move the needle” on these items: assuring that the patient voice is heard throughout healthcare Policy, Payors, Providers, & Patients: If there’s a conversation, we want to be a part of it You – our advocates – are the key to our advocacy success!

Build relationships Get involved

Build Relationships and Get Involved Be a part of the Power of the Patient Voice Share the mission of Mended Hearts Stay engaged and connected with PAN Advocate for cardiovascular patients YOU are our leaders among leaders!

Other Ways to Get Involved Volunteer for hospital boards or patient groups Seek out speaking opportunities in your local community State and local opportunities Use training materials and webinars to train new advocates Use the webinars and resources for chapter meetings

Be a voice for the mission Be able to speak about them Tell your story Be a voice for the mission Know the 5 Priorities Be able to speak about them Build relationships Get involved

Thank you! Questions?