10:10 - 11:40 amSaturday, September 17
LK 209
Workshop: Applying Behavior Change Models to Educate Genetically At-Risk Celiac Disease Patients: A Case Study And Workshop
LK 209
Workshop: Applying Behavior Change Models to Educate Genetically At-Risk Celiac Disease Patients: A Case Study And Workshop
Celiac Center, Beth Israel Deaconess Medical Center
Beyond Celiac
Objective This workshop will teach attendees how Beyond Celiac, a patient advocacy organization, is educating and empowering patients diagnosed with a serious, genetic disease to help advance diagnosis... Read more

Description

Objective 
This workshop will teach attendees how Beyond Celiac, a patient advocacy organization, is educating and empowering patients diagnosed with a serious, genetic disease to help advance diagnosis rates by encouraging those most at-risk to be tested: their biological relatives. Learn how qualitative patient-powered research that uncovered perceptions, barriers and knowledge gaps about disease risk and the testing process informed the design and launch of a national awareness campaign. 

Unmet Need 
When a health condition runs in the family, properly educating at-risk relatives is a critical tactic to improve diagnoses. To be successful, it’s critical to first identify and understand the specific role those already diagnosed have in helping their biological relatives understand disease risk. 

But this strategy represents only one piece of the puzzle. Those diagnosed cannot take action for their relatives and changing a person’s health-related behavior is notoriously difficult. These more basic challenges are just half of the hurdles the celiac disease field must overcome in order to advance diagnosis rates. 

Enter “gluten-free.” Now a common household word, its myths and food industry growth have obstructed understanding of celiac disease as a serious genetic autoimmune condition whose only treatment today is the gluten-free diet. The disease remains misunderstood and, as a result, is largely self-diagnosed. For the 83% of Americans left undiagnosed or misdiagnosed, their health is at stake and they are at risk for lymphoma, bone disease and other autoimmune diseases. 

Solution 
This workshop will examine how Beyond Celiac identified a creative solution to this uniquely complex problem by conducting primary qualitative research using an online community of patients and untested relatives. Rooted in the basics of verbal and non-verbal communication, a family member’s likelihood of getting tested is determined by key factors including how and when we talk about disease risk and severity and the mindful balance of being both informative and caring. 

Developed in collaboration with expert clinicians and a video production company, the Beyond Celiac campaign has reached over 642,000 people through online discussions, webinars, podcasts, views and downloads alone in 7 months. After using campaign resources, 95% of untested relatives surveyed said they are likely to ask their doctor for the celiac disease blood test. 

Participants will benefit from interactive dialogue and valuable insights about: 

  • A creative approach in conducting primary patient-centered research 
  • How motivated patients can help influence diagnosis strategies 
  • When online health discussions become barriers to behavior change 
  • The application of theoretical behavior change models, including role modeling and the Health Belief Model, one of the most widely used conceptual frameworks in health behavior 
  • How clinicians can supplement these efforts and apply similar approaches to their care models 
Contact Us

We're not around right now. But you can send us an email and we'll get back to you, asap.

Not readable? Change text. captcha txt

Start typing and press Enter to search