This newsletter serves to update the National Advisory Committee of the Access to Credible Genetics Resources Network (ATCG) on the status of the activities that have taken place during the first few months of this grant year. As we are now in the fifth, and final year of the project, there are many exciting activities to report. With Genetic Alliance as lead, the partners on the project include FRAXA Research Foundation, National Coalition for Health Professional Education in Genetics, National Council of La Raza, National Fragile X Foundation, Parent Project Muscular Dystrophy, and University of Maryland School of Medicine.

On September 22, 2009, ATCG hosted a one-day meeting that culminated with a lively dinner debate to bring together individuals with experience in conveying complex information to different types of audiences. We discussed issues around defining information quality, choosing content appropriately, and utilizing new technologies effectively for education. The audience included individuals interested in education, evidence-based care, communication, and health information. We are currently writing up the meeting proceedings into a monograph that will be available within the next few months.

The development and programming of two versions of the online Trust It or Trash It? tool is finished. The version for judging the quality of health information (www.trustortrash.org) starts with three basic questions: Who said it? When did they say it? How did they know? These questions help the reader think about the information critically. The second version, for developers of educational materials, provides additional guidance for choosing appropriate content and effectively presenting information (www.trustortrash.org/developer). Both versions of the Trust It or Trash it? tool are currently being translated into Spanish.

We have identified many types of audiences that would benefit from the use of the Trust It or Trash It? tool, and are beginning outreach and dissemination. Among these audiences are nonprofits, government agencies, condition-specific advocacy organizations, industry groups, hospitals and academic centers, and healthcare providers- basically any group that creates educational materials about genetic conditions. Dissemination efforts begin this month and will continue throughout the duration of the project.

Members of the Steering Committee have presented the ATCG project at many meetings thus far in the grant year:

American Association for the Advancement of Science
American College of Medical Genetics
American Public Health Association Annual Meeting
American Society of Human Genetics Annual Meeting
Annual meeting of the HRSA Regional Genetics Collaboratives
International Conferences for Rare Diseases and Orphan Drugs
Johns Hopkins School of Medicine Genetics Conference for Health   
          Professionals
National Society of Genetic Counselors
Molecular Medicine Tri-Conference
Office of the National Coordinator’s Research Data Symposium
Sarah Lawrence College Public Health Genetics/Genomics Certificate
          Program
University of Pennsylvania School of Medicine Center for Excellence in
          ELSI Research Symposium

As this is the final year of the project, evaluation of the tool is a major focus. University of Maryland obtained IRB approval to conduct focus groups to understand how the Trust It or Trash It? tool changes the way people think about and evaluate information they encounter about genetic conditions. We are conducting focus groups with five different audiences: condition-specific advocacy group members, medical students, medical school residents, health professionals, and the general public. All focus groups will be completed by the beginning of April.

The next big step for the Trust It or Trash It? tool is the creation of a "widget" that can be placed as a button on a website. When clicked, the button will expand so the Trust It or Trash It? tool is sized to fit the bottom of the computer screen, and users can read through materials while the tool remains at the bottom of the screen. This allows the user to have a webpage or document about health information open on their computer screen, while simultaneously accessing the parts of the tool to help the user evaluate the information.

Check out some of our recently developed products!

• Webinar: Creating Effective Brochures: A Guide for Content and Presentation
• How-To Guide: Creating Effective Brochures: A Guide for Content and Presentation
• The Trust It or Trash It? tool for evaluating information
• The Trust It or Trash It? tool for developing information