On March 19, 2017, Celiac Disease Foundation (CDF) Chief Executive Officer, Marilyn G. Geller, attended the CUE Advocacy Summit: Leveraging the Power of Patient & Consumer Advocacy to Transform Healthcare in New York City. The Summit was held in conjunction with the Guidelines International Network/North America’s Evidence-based Guidelines Affecting Policy, Practice, and Stakeholders (E-GAPPS III) conference. The Summit brought patients and consumer advocates together with guideline developers, methodologists, and other stakeholders in the clinical guideline enterprise for the purpose of constructive dialogue and initiation of durable relationships between them. The Summit also facilitated the expansion of patient-centered outcomes research/clinical comparative effectiveness research and improved patient and consumer engagement in research implementation practices.
The Summit was particularly timely as Celiac Disease Foundation plans to roll out within the next few months clinical guidelines software for pediatric celiac disease, in partnership with the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN). This software will help direct clinicians to determine, through easy steps, whether or not and how their patients should be tested for celiac disease.
The relevance of the CUE Summit also applies to Celiac Disease Foundation’s Patient Advocacy Program that trains patients in patient-centered outcomes research, allowing them to get involved in celiac disease research and research prioritization.
Consumers United for Evidence-based Healthcare (CUE), formerly referred to as the US Cochrane Center Consumer Coalition, is a national coalition of health and consumer advocacy organizations committed to empowering consumers to make the best use of evidence-based healthcare (EBHC), of which Celiac Disease Foundation is an appointed member. United by a common interest in integrating understanding and interpretation of EBHC into their advocacy activities, CUE member-organizations work to strengthen the voice of consumers and provide leadership in healthcare research.
CUE Advocacy Summit in New York City Focuses on Patient-Centered Outcomes Research