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Supporting and Connecting Headache Patient Communicators (Moderators & Content Creators)

Objectives

The ECHO program will provide training and community for the headache patient communicators that moderate online headache communities and create headache-focused content. By connecting and investing in the people that are leading and contributing headache communications, we aim to enhance the already strong headache communities and content online, expand audience size, increase organic reach via content sharing and expand PR efforts to garner more mainstream media coverage.

Participants in the ECHO program will learn:
● Best practices for moderating and managing online headache communities
● Tips and tricks for creating engaging content that cuts through the digital clutter
● How to take advantage of the Facebook (and other social media) algorithms and gain increased exposure
● Packaging and pitching stories and events for broader media

Overview

Beginning in January 2020, the ECHO program will consist of a series of one-hour webinars, every other week for nine months. ECHO participants will also be invited to join a closed Facebook Group where they can ask communications questions, collaborate with other headache communicators and share content.

The final ECHO curriculum will be informed by an initial survey of ECHO participants to gather data about the baseline knowledge and areas of interest of the ECHOmmunity. The initial curriculum for ECHO is:

 

The initial curriculum for ECHO

Module 1: ECHO Introduction and Community Guidelines

  • Webinar 1: Program overview, community guidelines for the ECHO FB group page
  • Webinar 2: Common elements and best practices in establishing, sharing and adhering to Community Guidelines
  • Webinar 3: Why and how to share content from the ECHOmmunity

Module 2: Social Media Moderation & Support

  • Webinar 4: Dealing with difficult posters, negative comments, spammers and conflict situations
  • Webinar 5: Best practices for responding to suicidal comments
  • Webinar 6: Understanding the challenges and barriers to treatment access
  • Webinar 7: Best practices to counsel on access issues and to engage audiences to change access policies
  • Webinar 8: Guidance on recruiting, training and managing new page Admins and Moderators

Module 3: Digital Content Creation and Promotion

  • Webinar 9: Best practices for creating engaging digital content
  • Webinar 10: Understanding the Facebook algorithm and creating content significant to organic reach
  • Webinar 11: Hacks and resources for cost-efficient graphics and videos
  • Webinar 12: Maximizing reach and audience no matter what your budget

Module 4: Public Relations 101 & Storytelling

  • Webinar 13: Understanding uses and advantages of different PR mediums
  • Webinar 14: Effective storytelling and how to adapt based on different audiences and goals
  • Webinar 15: How to build a media list, different types of media and how the industry is evolving
  • Webinar 16: Explanation of what reporters are looking for, getting a message heard and crafting a pitch
  • Webinar 17: Importance of defining a brand on social media and how it can be used as a tool for PR
  • Webinar 18: Measuring success for a media campaign and establishing Key Performance Indicators (KPIs)

Applying to Be a Part of ECHO

The ECHO program is intended for individuals that already have a role in headache communications. This could mean serving as a moderator of a headache community, having a headache blog, publishing on headache topics or having a communications role within a headache-focused organization. There is no cost to participate in the ECHO program. There is a brief ECHO Application Form that must be completed and submitted by December 31, 2019. Applicants accepted into the program will be notified in early 2020.

All the ECHO trainings are intended to support and add new ideas. By participating in ECHO you are not obligated to follow or adhere to any of the recommendations. Also, we understand and respect that some policies and guidelines of headache communities are confidential, so we will ask all ECHO participants to check with the organizations/sites they work with before sharing with the ECHOmmunity.

If you have questions, please email them to: info@headachemigraine.org

ECHO Instructors

Nancy Harris Bonk is a patient advocate and educator who has the honor and privilege of helping patients empower themselves to take an active role in their healthcare. Nancy has actively been involved in the migraine and headache disease community for over 15 years and is a moderator at  Health Union's Migraine.com. She is Vice President of Chronic Migraine Awareness, Inc. a 501 (c)(3) peer to peer organization offering support, education and information to the chronic migraine community. Nancy is on the National Headache Foundation Patient Leadership Council and is a member of CHAMP.

Jess Napier has been involved in creating, facilitating and managing online communities for more than a decade and she currently serves as the Social Media Director for CHAMP. Her work includes other nonprofits, private sector and public radio. Her favorite aspect of creating communities online is that the rules, challenges and opportunities are constantly evolving.

Evoke KYNE is a health communications agency dedicated to helping improve and save lives. The company has extensive experience in the migraine and headache space, launching global migraine awareness campaigns, and has also worked closely with CHAMP over the last several years to conduct a number of workshops upskilling patient advocates in public relations, messaging and social media.

ECHO Management & Sponsorship

ECHO is designed and managed by CHAMP, a 22 member coalition that provides support to people with headache, migraine and cluster diseases who are often stigmatized and under-served. CHAMP brings together organizations and leaders in this disease area to enhance communication, coordination and collaboration to more effectively help people wherever they are on their patient journey.

The ECHO program is made possible through the generosity of its sponsors Amgen and Novartis.

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