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Learning About Diagnoses

Within the Medical Home and the Portal

Children with special health care needs will receive much of their care and information about their condition from the primary care physician. Don't hesitate to ask your physician(s) for information, but know that, particularly for diseases or conditions that are uncommon, staying on top of all the latest information can be very difficult for even the most committed physicians.

Parents and other family members can help their child and their physicians by learning about their child's diagnosis and sharing this information when appropriate – physicians and other health care providers should welcome the information you share and appreciate the partnership reflected by your doing so. When providing information you've found, try to give your physician time to review it and let her/him know how soon you'd like to hear back about it and a little about your thoughts regarding it.

Although the information offered in the Medical Home Portal's "Diagnoses & Conditions" section is written primarily for physicians, we hope that families will also take advantage of this information and we expect them to learn a lot from it. Visit Tourette Syndrome for an example of a Diagnosis Module.

Health Information Guidelines: Knowing When Information is Reliable

The internet is a great source of up-to-date health information, but the amount of information can be overwhelming and the information you find may not be reliable. To get the most out of the available resources, you need to be a wise consumer and learn to evaluate the reliability of information. Internet users have access to current medical articles, statistics, the latest treatment options, and much more. Because a web site can be posted by almost anyone, it is important to learn how to judge the validity of information you find. The guidelines that follow are focused on assessing web site information, but the questions may also help you determine the quality of information in books, magazines, and other printed material.

How accurate does this information appear?

  • Is the material free of spelling, grammatical, or typographical errors? These are a clue to a lack of quality control on the site.
  • Are the sources of information listed so that you could cross-reference them from another site or published literature?
  • Is it clear who is responsible for content of the site? Are their credentials provided?
  • Does this information confirm what you have already found on other sites?

How current is the information?

  • Do the pages indicate when an article was first posted, and when it was last revised?
  • Is there any other indication that the material is kept current?

Does the information appear to be objective?

  • Is the material free of advertising, and if not, is commercial content clearly differentiated from the informational content?
  • Is this information provided as a public service?

Who is ultimately responsible for the contents of this site?

  • Is there a page describing the purpose of the sponsoring organization?
  • Is there contact information for the sponsoring organization, including a phone number and postal address?
The more of these questions you can answer 'yes' to, the more likely the source contains high quality information. Bookmark sites that you feel are good sources of accurate, current information and visit them often to keep up on the latest news on your own child's health condition.

Internet Resources for Medical Information

The links below can be trusted to offer high quality information on various levels - the first five are best for those just beginning to learn about a diagnosis and the last is for those seeking a more extensive understanding of the condition.
  • MedlinePlus
    This site is a goldmine of authoritative and up-to-date health information from the world's largest medical library, the National Library of Medicine. Click on 'Health Topics' to find an extensive list of valuable links to reliable sources of information on your condition of interest. The 'Medical Encyclopedia' provides a brief summary of relevant information on each condition, and the 'Dictionary' offers definitions of many medical and other health related terms.
  • MedlinePlus Medical Dictionary
    Comprehensive dictionary created by the National Library of Medicine and Merriam-Webster.
  • MedlinePlus Medical Encyclopedia
    From the National Library of Medicine and A.D.A.M.; a comprehensive medical encyclopedia aimed at consumers, with lots of photographs and illustrations
  • Children's Hospital Boston
    To learn more about many pediatric conditions and the treatment options, visit the Children's Hospital Boston home page and click on 'Child's Health A-Z' for user-friendly information.
  • KidsHealth
    Click on 'Parents', 'Kids' or 'Teens' to use the Nemours web site 'search' box where you can enter the terms you are researching. The results are listed and marked with 'Parents', 'Kids', or 'Parents' to indicate the level at which the information is written.
  • healthfinder.gov
    This is an award-winning Federal Web site for consumers, developed by the U.S. Department of Health and Human Services together with other Federal agencies. Enter your term in the search box for easy to use definitions and current information.
Parents who are equipped with good information about their child's diagnosis and condition are better able to actively participate in the Medical Home team, ensuring that their child receives the best care possible.

Resources

Information & Support

The following will link you to more assistance in finding and evaluating information on the web. Each focuses on one or more aspects of health information.

For Professionals

Finding Reliable Health Information Online (genome.gov)
focused on finding reliable information about genetics and genetic conditions; from the National Institutes of Health, National Genome Research Institute

For Parents and Patients

A User's Guide to Finding and Evaluating Health Information on the Web (MLA)
from the Medical Library Association; includes a brief guide and lists of recommended sites.

Consumer and Patient Health Information Section (MLA)
from a section of the Medical Library Association, provides a "Top 100 List" of health websites you can trust.

Evaluating Health Information (MedlinePlus)
Overview of finding and judging health information on the web, with links to more resources, including tutorials; from the National Library of Medicine.

Guide to Health Web Surfing (MedlinePlus)
Brief guide to judging the reliability of health information found on the web; from the National Library of Medicine

How to Evaluate Health Information on the Internet (FDA)
A list of Questions & Answers about health information, includes information on government protections for consumers; from the U.S. Food and Drug Administration.

Quackwatch
Provides quackery-related information in an effort to improve the quality of health information on the Internet.

Health On the Net Foundation (HONcode)
An organization that certifies web sites that comply with their Code of Conduct aimed at standardizing reliability of health information on the web. Sites that meet the criteria and have been certified will display the HONcode symbol.

Virginia Polytechnic Institute and State University
Offers a section on Research Skills as well as portals to full-text electronic journals.

Alternative Therapies Fact Sheet (PDF Document 49 KB)
Information, tips, and resources from the Utah Family Voices Health Information & Support center.

Intermountain Healthcare Clinical Genetics Institute
Provides clinical medical genetics services and genetic couseling at two outreach clinics in Salt Lake City and Logan.

Multilingual Web Resource
Provides links to a variety of web sites and materials in English and Spanish, from the Oregon Leadership Education in Neurodevelopmental and Related Disabilities.

Authors

Author: Chuck Norlin MD, 12/2003
Reviewing Author: Alfred Romeo RN, PhD, 1/2009
Content Last Updated: 1/2009