Panel workshop will inform attendees about strategies for educating and empowering those with genetic diseases to improve diagnosis rates
PHILADELPHIA (June 8, 2016) – Beyond Celiac today announced that the organization has been selected to present at Stanford Medicine X 2016. Each year Stanford Medicine X brings together the most innovative and engaging minds in academia and industry to exchange bold new ideas about the future of medicine and the role technology plays in improving health. The annual gathering of leading clinicians, researchers and educators, being held from September 16 – 18, is a catalyst for healthcare innovation and patient engagement.
The Beyond Celiac workshop, “Applying Behavior Change Models to Educate Genetically At-Risk Celiac Disease Patients,” will highlight the organization’s development and utilization of an in-depth patient engagement model to help advance celiac disease diagnosis rates. Panel participants will discuss how Beyond Celiac is leveraging this model to educate and empower individuals living with celiac disease to encourage their biological relatives, who are most at-risk, to be tested.
The workshop represents the Everyone Included™ principles of mutual respect and inclusivity, which Medicine X is based on. Everyone Included™ creates a culture of health in which everyone is trusted and respected for the expertise they bring, where openness and experimentation is the norm, people have personal ownership of health, individual stories have global impact, and the patient voice and choice is a part of all stakeholder decisions.
Aimee Corso, a nationally-respected consultant on improving stakeholder communications within the healthcare system and board member of Beyond Celiac, will moderate the conversation. The workshop will feature a panel of experts on celiac disease, clinical research, media production and patient engagement:
- Alice Bast, CEO, Beyond Celiac – Bast will discuss the important role patient organizations have in driving diagnosis rates and the factors such organizations should consider when determining engagement strategies.
- Daniel Leffler, MD, MS, Director of Research, The Celiac Center, Director of Quality Assurance, Division of Gastroenterology, Beth Israel Deaconess Medical Center; Beyond Celiac Scientific/Medical Advisory Council member – A recognized international thought leader in the celiac disease field, Dr. Leffler will present the foundational clinical research insights that guided this campaign and also share ideas on how clinicians can apply similar approaches to their care models.
- Patrick McGovern, Senior Director, Global Strategy, Wondros – McGovern will discuss how Wondros and Beyond Celiac partnered to formulate the creative strategy and produce a video public service announcement (PSA) that serves as the campaign’s centerpiece.
- Kristin Voorhees, MA, Director of Healthcare Initiatives, Beyond Celiac – Responsible for the research, development, launch and evaluation of the campaign, Voorhees will outline how an online research community captured critical insights from patients and consumers and determined the campaign’s strategy and messaging.
Based on the insights pulled from its research and patient engagement efforts, Beyond Celiac developed Seriously, Celiac Disease to inspire individuals with celiac disease to speak with their biological relatives about getting tested. Elements of the campaign are grounded in health behavior change models and include: a PSA video, discussion guides and a media campaign to promote the need for higher diagnosis rates. Seriously, Celiac Disease has reached more than 642,000 people through online chats, webinars, podcasts, video views and downloads of materials since its launch in April 2015. After speaking with diagnosed family members, 95% of untested relatives surveyed said they are likely to ask their doctor for a celiac disease blood test.
“Since our start 13 years ago, Beyond Celiac has been committed to conducting, supporting and advocating for research. We’ve developed essential community support programs and advanced celiac disease treatments,” said Bast, who suffered from the debilitating symptoms of celiac disease for nearly a decade before her diagnosis in 1994. “Seriously, Celiac Disease is the first and only awareness campaign dedicated exclusively to enabling celiac disease patients to encourage family members to get tested. It is through research and innovation that we are able to craft new ways of reaching the at-risk celiac disease community, and we are thrilled that we will be able to tell the story at the prestigious Stanford Medicine X conference.”
To learn more about Seriously, Celiac Disease, visit www.SeriouslyCeliac.org.
About Beyond Celiac
Beyond Celiac, formerly known as the National Foundation for Celiac Awareness, is a leading international advocacy organization committed to improving awareness and understanding of celiac disease as a serious genetic autoimmune disease, accelerating innovation to support those with celiac disease to live life to the fullest, and forging pathways to a cure. We aim to inspire hope, build a strong community and serve as a trusted resource on celiac disease. For more information, please visit www.beyondceliac.org.