When a disorder is first diagnosed, the doctor or other health care professional often gives a handout that summarizes key points of information. (See also Introduction to Making the Most of Health Care.)
If people want to learn more about their disorder, many other sources of information are available. In the United States, people typically turn to the internet, either searching on a term in a search engine (such as Google), or asking their contacts on social media. However, although the internet provides a huge volume of information, the accuracy of that information varies widely. It can be hard to judge the credibility of online sources. Other ways of finding information include asking doctors, nurses, or other practitioners to tell them about the disorder or to recommend reliable sources of information. Some local, university, or hospital libraries have useful resources, including a research librarian.
Generally, governmental medical sources are authoritative and reliable. On the internet, reliable resources that provide a large amount of useful and accurate information to the public include the
National Institutes of Health (NIH)
Agency for Healthcare Research and Quality (AHRQ)
Centers for Disease Control and Prevention (CDC)
These sites also provide links to other helpful and reliable sites. Some major and regional health systems also maintain reliable, online disease and treatment resources for patients and physicians. Many disease-specific, patient-oriented sites (such as the National Multiple Sclerosis Society or the Alzheimer's Association) provide information for people with a particular disorder. In contrast, sites designed to sell specific products or a specific service may be less reliable. Their information may be biased or inaccurate.
Support groups may provide helpful information, as well as psychologic support. Such groups can be found through local newspapers, hospitals, offices of doctors or other health care practitioners, and the internet. Most cities in the United States have support groups, sometimes for specific disorders. For example, Gilda’s Club, which is located in several cities, offers support for people living with cancer. Other people who have the same disorder or who care for someone with the same disorder may have many practical and useful suggestions for day-to-day living, such as where to find pieces of specialized equipment, what equipment works best, and how to interact with or care for someone with a disorder.
Another resource is chat rooms on the internet. Such sites enable people to communicate with one another about specific disorders and to share possible resources; however, on these sites in particular, the scientific validity of the information should not be assumed. One person's individual illness experience or suggestions may not be appropriate for another person with the same disorder.
More Information
The following English-language resources may be useful. Please note that THE MANUALS is not responsible for the content of any but the last resource.
Agency for Healthcare Research and Quality (AHRQ): This organization produces evidence to improve the quality of health care by making it safer, as well as more accessible, equitable, and affordable.
Centers for Disease Control and Prevention (CDC): The CDC is part of the US Department of Health and Human Services and provides science-based, data-driven, health information.
National Institutes of Health (NIH): This site provides access to health information, updates on clinical research trials, and science education resources for students and educators.
