Finding Information and Support
Step 4: Seek Out Information
Next Steps After Your Diagnosis
Now that you know your treatment options, you can learn which ones are backed up by the best scientific evidence. "Evidence-based" information—that is, information that is based on a careful review of the latest scientific findings in medical journals—can help you make decisions about the best possible treatments for you.
Evidence-based Information Comes From Research on People Like You
Evidence-based information about treatments generally comes from two major types of scientific studies:
- Clinical trials are research studies on human volunteers to test new drugs or other treatments. Participants are randomly assigned to different treatment groups. Some get the research treatment, and others get a standard treatment or may be given a placebo (a medicine that has no effect), or no treatment. The results are compared to learn whether the new treatment is safe and effective.
- Outcomes research looks at the impact of treatments and other health care on health outcomes (end results) for patients and populations. End results include effects that people care about, such as changes in their quality of life.
Take Advantage of the Evidence-based Information That Is Available
Health information is everywhere—in books, newspapers, and magazines, and on the Internet, television, and radio. However, not all information is good information. Your best bets for sources of evidence-based information include the Federal Government, national nonprofit organizations, medical specialty groups, medical schools, and university medical centers.
Some resources are listed below, grouped by type of information. For additional ideas, including links to Internet sites, go to: Where to Find More Information.
Information about your disease or condition and its treatment is available from many sources. Here are some of the most reliable:
The healthfinder® site—sponsored by the U.S. Department of Health and Human Services—offers carefully selected health information Web sites from government agencies, clearinghouses, nonprofit groups, and universities.
Go to: http://www.healthfinder.gov/organizations/OrgListing.asp
- Health Information Resource Database:
Sponsored by the National Health Information Center, this database includes 1,400 organizations and government offices that provide health information upon request. Information is also available over the telephone at 800-336-4797.
Go to: http://www.health.gov/nhic/#Referrals
MedlinePlus® has extensive information from the National Institutes of Health and other trusted sources on over 650 diseases and conditions. The site includes many additional features.
Go to: http://www.nlm.nih.gov/medlineplus
- National nonprofit groups such as the American Heart Association, American Cancer Society, and American Diabetes Association can be valuable sources of reliable information. Many have chapters nationwide. Check your phone book for a local chapter in your community. The Health Information Resource Database can help you find national offices of nonprofit groups.
Go to: http://www.health.gov/nhic/#Referrals.
- Health or medical libraries run by government, hospitals, professional groups, and other reliable organizations often welcome consumers. For a list of libraries in your area, use the MedlinePlus® "Find a Library" feature.
Go to: http://www.nlm.nih.gov/medlineplus/libraries.html.
Current Medical Research
You can find the latest medical research in medical journals at your local health or medical library, and in some cases, on the Internet. Here are two major online sources of medical articles:
PubMed® is the National Library of Medicine's database of references to more than 14 million articles published in 4,800 medical and scientific journals. All of the listings have information to help you find the articles at a health or medical library. Many listings also have short summaries of the article (abstracts), and some have links to the full article. The article might be free, or it might require a fee charged by the publisher.
Go to: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi
- PubMed Central:
PubMed Central is the National Library of Medicine's database of journal articles that are available free of charge to users.
Go to: http://www.pubmedcentral.nih.gov
Perhaps you wonder whether there is a clinical trial that is right for you. Or you may want to learn about results from previous clinical trials that might be relevant to your situation. Here are two reliable resources:
ClinicalTrials.gov provides regularly updated information about federally and privately supported clinical research on people who volunteer to participate. The site has information about a trial's purpose, who may participate, locations, and phone numbers for more details. The site also describes the clinical trial process and includes news about recent clinical trial results.
Go to: http://clinicaltrials.gov/ct/g
- Cochrane Collaboration:
The Cochrane Collaboration writes summaries ("reviews") about evidence from clinical trials to help people make informed decisions. You can search and read the review abstracts free of charge.
Go to: http://www.cochrane.org/reviews/index.htm.
Or you can read plain-English consumer summaries of the reviews.
Go to: http://www.informedhealthonline.org.
The full Cochrane reviews are available only by subscription. Check with your local medical or health library to see whether you can access the full reviews there.
Outcomes research provides research about benefits, risks, and outcomes (end results) of treatments so that patients and their doctors can make better informed decisions. The U.S. Agency for Healthcare Research and Quality (AHRQ) supports improvements in health outcomes through research, and sponsors products that result from research such as:
- National Guideline Clearinghouse™:
The National Guideline Clearinghouse™ is a database of evidence-based clinical practice guidelines and related documents. Clinical practice guidelines are documents designed to help doctors and patients make decisions about appropriate health care for specific diseases or conditions. The clearinghouse was originally created by AHRQ in partnership with the American Medical Association and America's Health Insurance Plans.
Go to: http://www.guideline.gov
Steer Clear of Deceptive Ads and Information
While searching for information either on or off the Internet, beware of "miracle" treatments and cures. They can cost you money and your health, especially if you delay or refuse proper treatment. Here are some tip-offs that a product truly is too good to be true:
- Phrases such as "scientific breakthrough," "miraculous cure," "exclusive product," "secret formula," or "ancient ingredient."
- Claims that the product treats a wide range of ailments.
- Use of impressive-sounding medical terms. These often cover up a lack of good science behind the product.
- Case histories from consumers claiming "amazing" results.
- Claims that the product is available from only one source, and for a limited time only.
- Claims of a "money-back guarantee."
- Claims that others are trying to keep the product off the market.
- Ads that fail to list the company's name, address, or other contact information.
To learn more about finding evidence-based information, go to Where to Find More Information.