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Suffering from information overload? Know when to trust it or trash it.

Have you ever searched online for health information and become overwhelmed by the volume of information that's out there? When you receive information from a close friend or a healthcare provider, do you trust it because of the person that gave it to you? What if the information is in a book or a magazine or newspaper article--how do you know what's credible? We're constantly inundated with information from a variety of sources with a great range in accuracy, reliability, and value. It's hard to know where to start! How we judge and think about information can be crucial when it comes to the health of a child or loved one.

Through a grant with the Centers of Disease Control and Prevention (CDC), Genetic Alliance and several partners created an aid to help you judge for yourself when to trust information and when it might be better to keep searching. We also created a tool to help people develop educational materials for their organizations. Although the project was originally focused on rare genetic conditions, the tools we produced through years of work, review, and refinement are applicable to all health conditions--some people have even used them to sort out information that isn't directly health-related. These tools are called Trust It or Trash It? and are available for free online at www.trustortrash.org. For the in-depth guide to creating trustworthy educational materials, visit www.trustortrash.org/developer.

We want our medical care to be based on evidence; the information we receive about health should be, as well. At its most basic level, Trust It or Trash It? boils down to critical thinking. Instead of taking information at face value or making quick assumptions, the tool gives you filters to guide your thinking about a resource. The website leads you through three questions: Who said it? When did they say it? How did they know? Within each of these three sections, the tool provides examples to help you decide whether the information in question is quality and trustworthy or not.

Healthcare providers, advocacy organizations, health educators, families, drug companies, government agencies, the media, and others all produce information about health conditions. This vast array of sources has a huge spectrum of motives, experience, and expertise. The in-depth version of Trust It or Trash It? was created for use by any of these groups. Just as we could all use a guide to help us judge information in a rational and consistent manner, individuals and organizations creating health information benefit from a set of parameters to encourage the creation of high quality information. This developers' tool is also organized into three sections: the Content Scale, the Quality Scale, and the Usability Scale. The Content Scale functions as an idea generator for topic areas that can be covered in a resource. The Quality Scale acts as a self-evaluation tool for information developers, helping them to evaluate the quality of the information they produce. This ensures that the people creating health information use the same standards as the people evaluating that information. The Usability Scale offers tips for design and layout, so the product is accessible and understandable to the target audience.

Sample topic areas covered by the developer version of the Trust It or Trash It? tool (www.trustortrash.org/developer):

Content Scale

* Basic Information

What is this condition? What are its features?

* Medical Care

What is involved in getting a diagnosis? What is the treatment?

* Developmental Issues

How can I best help my child learn?

* Family Issues

How will things change for us? What will this condition cost us, financially?

Quality Scale

* Source of the information

Who is responsible for the content?

* Depth/nature of expertise

What is the basis for the author's expertise?

* Consistency among materials

Is new information substantiated?

* Basis for information

Does the information apply to my situation?

* Type of sponsoring or funding group

Is there potential bias due to funding?

* Date

Is the information up-to-date?

Usability Scale

* Know your audience

Are the terms, pictures, and examples used by your target audience?

* Consider the reading level

Do you know the average reading level of your audience? Is the content easy to read?

* Write your material

Are you using the active voice and short paragraphs? Do you provide examples?

* Present your material

Is information organized logically?

Moms and dads like you, condition-specific advocates, healthcare providers, genetics professionals, and health educators all contributed to this tool's development and pilot testing. We hope it is useful, and we are interested in making it even better! We would love to hear from YOU! Please send your comments and questions about the tool to Amelia Chappelle at achappelle@geneticalliance.org. This project is supported by cooperative agreement 5U10DD525036-05 with the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention (CDC). For more information on this project, visit www.geneticalliance.org/atcg.

Project Partners:

National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention; Genetic Alliance (lead); FRAXA Research Foundation; GeneTests; National Coalition for Health Professional Education in Genetics; National Council of La Raza; National Fragile X Foundation; Parent Project Muscular Dystrophy; University of Maryland School of Medicine.
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Author:Chappelle, Amelia; Krokosky, Alyson; Terry, Sharon F.
Publication:The Exceptional Parent
Geographic Code:1USA
Date:Jun 1, 2011
Words:862
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