Newsroom

Learn How You Can Help Us Tell a Story of Lupus!

We want your lupus stories!

ACR Collaborative Initiatives department (COIN) is searching for realistic lupus stories, scenarios and anecdotes from providers and patients that will primarily be used in the development of educational materials for promotoras (i.e., health care workers in Latino communities) on how to conduct lupus outreach and build lupus awareness in their communities.

This Is Where You Come In…

Please take a look at the topics in the “What are we looking for?” section below and:

1.      share complete or partial storyline ideas (outline, bulleted, paragraph or any format) for any of the listed topics by emailing  us at coin@rheumatology.org, posting ideas on our Twitter or Facebook page and use the hashtag #ACRLUPUSSTORY in your post, or discussing  them with us at the Collaborative Initiatives kiosk in the Discovery Center at the ACR Annual Meeting, or

2.      let us know if you are interested in working with us to develop the full storylines over the next thirty (30) days

When developing storyline ideas, consider:

  • A protagonist, likely a patient
  • A challenge facing the protagonist, (e.g., experiencing lupus signs and symptoms, along with a description of those signs and symptoms)
  • Barriers to addressing the challenge, (e.g., the protagonist lacks a regular health care provider)
  • How the protagonist addresses the challenge, (e.g., the protagonist goes to a local community-based clinic)
  • An outcome, (e.g., the protagonist is misdiagnosed with chronic fatigue syndrome and given treatment for that condition)
  • A cliffhanger, (e.g., “even with treatment, symptoms continue,” or for the last module, a resolution)

What are we looking for?

We are looking for storylines that bring to life the following topics:

Lupus overview

Storyline will:

  • highlight definition of lupus and its causes,
  • describe specific lupus signs and symptoms to help promotoras understand the disease,
  • address the many potential challenges of diagnosing lupus and how promotoras assist clients in this process, and
  • explain the specific health disparities Latinas with lupus experience and how to build community awareness in response to these disparities.

Identifying resources and providing referrals

Story line will:

  • highlight the importance of obtaining an accurate and prompt lupus diagnosis,
  • provide tools to determine how and when to refer clients to appropriate providers and services through a client needs assessment, and
  • illustrate how to research and prioritize client information.

Health care system navigation

Storyline will:

  • describe the path to a lupus diagnosis,
  • illuminate the specific barriers to access and pay for health care services encountered by Latinas, and
  • provide skills necessary to overcome these barriers through culturally competent health care system navigation skills.

Importance of treating lupus

Storyline will:

  • describe lupus treatments and treatment adherence,
  • provide useful tools to improve treatment adherence for their clients with lupus, and
  • discuss healthy lifestyle changes promotoras can promote to their clients.

Social and emotional support

Storyline will:

  • emphasize the importance of social and emotional support for Latinas with suspected or diagnosed lupus, and
  • provide information promotoras can share with clients to explain lupus to their family and friends

DON’T WAIT!

We would like to hear from you by 11:59 PM ET on Monday, November 13, 2017. Submit as many storyline ideas as you like! Questions? Please contact coin@rheumatology.org.