HEALTH RIGHTS HOTLINE Independent Assistance For Health Care Consumers

Learning About Your Health Condition

Learning about your health condition and treatment options is an important part of taking charge of your health care. Whether you simply want to learn more about your condition or you are preparing an appeal, there are many resources available. This action guide highlights how you can get information.

Talk To Your Doctor

Talking to your doctor is a good place to start to help you understand your condition, treatment options, and complex medical language. Ask the doctor who is recommending a specific treatment for information concerning that treatment. He or she should be able to refer you to journal articles or to results of studies to help you understand more about uncommon or "experimental" treatments.

ACTION TIP Your doctor, or the nurse in your doctor's office, should be able to refer you to organizations that publish information about your specific condition and treatment options.

Condition-Specific Organizations and Medical Specialty Societies

Condition-specific organizations assist people affected by a particular illness or disease. Such organizations often produce consumer-oriented materials about the condition, sponsor patient support groups, and provide referrals to specialists and specialty clinics.

ACTION TIP The Alliance of Genetic Support Groups is a good way to locate local support groups. The Alliance maintains a directory of associations and support groups and can be reached at 1-800-336-GENE (toll free) or via the Internet.

Medical specialty societies are organized for doctors who focus on particular areas of medical practice. These societies may be able to provide you with the most recent information and refer you to specialists who are members.

ACTION TIP Contact the American Medical Association (AMA) for information about medical specialty societies. You can call the AMA at 1-800-621-8335 (toll free).

Libraries

You will find medical literature at your community library as well as at the libraries of universities, medical schools, and hospitals. Many public libraries also provide Internet access for a small charge. A librarian should be able to provide basic instruction on using the available resources.

ACTION TIP If you plan to visit a medical library, call ahead to schedule an appointment with the librarian so he or she can help you.

Most medical libraries also are open to the public, but be prepared to pay to photocopy materials or if you want the librarian to do research for you. To find out about the medical libraries available in the Sacramento area, call the Health Rights Hotline.

The Internet

The Internet is helpful for doing medical research. However, there is a wide range of information and not all of it is either accurate or credible. Consider only those sources that are well established and reliable. Whether you do the research yourself or someone helps you, here are some good starting points for Internet research.

• American Medical Association: Useful features for consumers include doctor and hospital referrals, medical news and journals. The Education Link leads to other medical sites, including regional and national specialty societies and resources for specific illnesses and conditions.
• National Institutes of Health: One of the world's foremost biomedical research centers with 24 separate Institutes and Centers. This site provides health information for consumers, including free MEDLINE, the Combined Health Information Database (CHID), and the Home Page for the Office of Rare Diseases.
• Healthcare Research and Quality: A federal agency charged with developing clinical guidelines for disease prevention, diagnosis and treatment. The website includes on-line access to clinical practice guidelines and consumer oriented health information.
• Genetic Alliance: Maintains an on-line directory of organizations with links to the websites of organizations and support groups. The directory is not limited to genetic conditions and is an excellent way to locate health-related organizations.
• Med Help International: A consumer health network that offers medical information and support services.
• Family Village, A Global Community of Disability-Related Resources: A global community that integrates information, resources and communication opportunities for people with disabilities, their families and caregivers. Includes information on specific diagnosis, adaptive technology, special education and recreational opportunities for people with disabilities.
• Medscape: Pools information from clinical journals, medical news outlets, medical education programs, and material created especially for Medscape. The site includes the Web's largest collection of full-text, peer-reviewed clinical medicine articles. Access to Medscape is free, but requires an on-line registration.

Call The HEALTH RIGHTS HOTLINE

The Health Rights Hotline is a totally independent, free service that provides information and assistance about your rights as a health care consumer. Experienced counselors answer questions and help you in the appeal process. If you need assistance, give us a call.