If you were recently diagnosed with a serious illness or chronic condition, what would you do?
This resource will help you to use research and other information to make the best treatment decisions for you.
On this page
- Using Healthcare Information to Help Make Treatment Decisions
- Finding Reliable Information
- Understanding Different Types of Healthcare Research
- Making Your Decision
- Getting Support
- Additional Resources
Using Healthcare Information to Help Make Treatment Decisions
Good Information Is Essential to Good Decisions
It may have taken you only a visit or two to your doctor or other healthcare provider to find out what's causing your health problem. It may have taken longer. But now you have a diagnosis, and it's time to make some decisions about your treatment.
For many conditions, there is no one "right" treatment. You may have several options—each with its upsides and downsides. Some of your options may have been proven by healthcare research to be effective, while others may not.
In the future, your doctor or other healthcare provider may be able to tap into a nationwide database containing the results of treatments for thousands of people like you with your condition. This would help you and your doctor make a good decision about the treatment that would be right for you.
Initial efforts to develop this national database are under way, but until that database is available, there are still things you can do to make sure you get the best health care possible—right now.
Finding out more about your condition is a good place to start. By contacting groups that support your condition, visiting your local library, and searching on the Internet, you can find good information to help guide your treatment decisions. Some information may be hard to find—especially if you don't know where to look. This document has been created to point you in the right direction.
Healthcare Quality Can Vary
Many things can affect the quality of your healthcare, depending on your doctor or other healthcare provider, your health plan, your hospital, and where you live.
Online Resource: Healthcare Quality is an Internet site sponsored by the Federal Government's Quality Interagency Coordination Task Force. This site explains what quality healthcare is, why it matters, and how you can get it.
Go to: http://www.consumer.gov/qualityhealth
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Finding Reliable Information
Where Can You Find Good Information?
Books, newspapers, magazines, television and radio programs, and the Internet offer access to a lot of health-related information. However, not all information is good information.
You can begin your search and figure out what's good information and what's not by following these three steps:
Contact a Group That Advocates for Your Condition
Groups such as the American Heart Association, the American Cancer Society, and the American Diabetes Association, will probably have a local chapter in your community. These organizations can be a valuable source of information and support.
How to Find Them: If you can't find them in the phone book, most libraries have directories that provide phone numbers and Internet addresses for their national headquarters.
The National Health Information Center (NHIC) offers a toll-free telephone referral service to help people get in touch with organizations and resources that can provide information about specific conditions and illnesses. You can talk to an information specialist by calling 1-800-336-4797.
Visit Your Local Library
At the library you can find:
- Medical texts and reference books.
- Consumer health books.
- Newspapers and magazines.
- Medical and healthcare journals.
You can ask reference librarians for help with your search. They may know about resources that would be unfamiliar to you.
Get on the Internet
Another way is to search for information on the Internet. If you don't have your own computer, many libraries provide access to the Internet through their computers. Ask your librarian if this is available to you and don't hesitate to ask for help if how to get "online" isn't clear.
Here are some ways to get good information on the Internet:
- Start at a Site That Focuses on Health
- Look for a Name You Can Trust
- Look at the Latest and Best Studies
- Exercise Caution
Start at a Site That Focuses on Health
There are many sites that focus on health information on the Internet. Some are commercial sites; others are sponsored by universities or the Federal Government. Using a site that is devoted to health information is an easy way to get going.
Online Resource: The healthfinder® site is a good place to start. Sponsored by the U.S. Department of Health and Human Services, it offers links to hundreds of sites that contain reliable healthcare information.
Go to: http://www.healthfinder.gov
Look for a Name You Can Trust
Besides Government-sponsored sites, many medical schools and university medical centers have consumer health education sites that contain a wide range of information. The information in these sites is most likely to be science-based and reputable.
Look at the Latest and Best Studies
You might find clues or pieces of information in articles from medical journals. Although these articles are written in medical language, sites that direct you to summaries of the articles can be helpful.
Online Resource: The National Library of Medicine offers a free online catalog of medical journal articles and article abstracts called MEDLINEplus that provides current information on specific diseases and conditions.
Go to: http://www.nlm.nih.gov/medlineplus
Exercise Caution
Genuine medical miracles are few and far between. Beware of any drugs or treatments that make big claims. Not all information is objective and honest. If you are not sure about any treatment you find discussed on the Internet, ask your doctor or other healthcare provider about it.
Online Resource: Virtual "Treatments" Can Be Real-World Deceptions, from the Federal Trade Commission (FTC), offers a list of words and key phrases to be on the lookout for. These words and phrases could indicate phony, exaggerated, or unproven claims on Internet health sites.
Go to: http://www.ftc.gov/bcp/conline/pubs/alerts/mrclalrt.htm
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Understanding Different Types of Healthcare Research
What Can Healthcare Research Tell You?
Healthcare research plays a critical role in providing up-to-date information on what works, and what doesn't work, in treating many different kinds of diseases and conditions. This information helps improve healthcare quality by making sure that:
- You receive the right treatment, at the right time, and in the right way.
- You don't receive treatments that are unnecessary, costly, or even harmful to your health.
You may hear about the results of healthcare research—perhaps even studies about your condition—on the news, or read about it in a newspaper or magazine. That's because scientists are constantly involved in a variety of research projects supported by the Federal Government, charitable foundations, and other public- and private-sector groups.
Main Types of Research Studies
There are four main types of studies that researchers conduct about health conditions:
Laboratory Experiments
Laboratory experiments are done to find out the cause of a disease, or how a drug or treatment works. They are usually carried out on cells or tissue, or on laboratory animals.
Clinical Trials
Clinical trials use different study methods to make sure the results they get are true, and not due to outside influences. People are randomly assigned to different treatment groups—some get the research treatment, others get a standard treatment or may be given a "placebo" or no treatment. The groups are monitored, and results are compared to evaluate whether or not the treatment works.
Epidemiological Research
Epidemiological research looks at:
- The natural course of diseases in a particular group of people.
- Relationships between people and their health habits, life styles, and environment.
- Risk factors for certain diseases.
Example: Data shows that people who smoke have a higher risk of developing lung cancer.
Outcomes Research
Outcomes research uses a wide variety of information about how well treatments work in the real world. Outcomes research can tell whether treatments work better for certain types of patients or in specific situations. Then, recommendations can be made about treatments based on whether they work or not, and which ones are most likely to give the best results with the fewest risks. This is known as "evidence-based medicine." Sometimes these recommendations are gathered together in clinical practice guidelines. Doctors and other healthcare providers can use this kind of information to help you weigh the risks and benefits of your treatment options.
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Making Your Decision
How Do You Make Your Decision?
Once you have found out as much as you can about your diagnosis—and perhaps, sought out a second opinion—it's time to talk to your doctor or other healthcare provider about the information you have gathered. You may want to create a list of questions to ask.
Online Resource: Your Guide to Choosing Quality Healthcare: Choosing Treatments, from the Agency for Health Care Policy and Research, offers some sample questions to get you going.
Go to: http://www.ahrq.gov/consumer/qntool.htm
Now is the time to start making decisions with your doctor or other healthcare provider about how to treat or manage your condition. Find out how you can make the right decision:
- Check Out Your Options
- Look at the Benefits and Risks of Each Treatment
- Develop a Treatment Plan with Your Doctor
Check Out Your Options
Evidence-based medicine, in the form of clinical practice guidelines, can help you and your doctor or other healthcare provider decide what would be the best treatment for you. Selecting the best treatment is a decision that depends on the following:
- What research shows has worked or hasn't worked for your particular condition.
- How you feel about the different treatments.
Online Resource: The National Guideline Clearinghouse™ offers hundreds of evidence-based clinical practice guidelines for treating the most common medical conditions.
Go to: http://www.guideline.gov
Look at the Benefits and Risks of Each Treatment
Every treatment has benefits and risks. There are tradeoffs to be made—and they all depend on what you determine is best for you, both medically and psychologically. How do you decide which treatment is best for you? What matters is what matters most to you.
Example: If you are an older man with a prostate problem that makes it hard to urinate, there are a number of treatments a doctor or other healthcare provider can recommend. Surgery is one option; medicine is another.
Online Resource: Your Guide to Choosing Quality Health Care: Choosing Treatments, from the Agency for Health Care Policy and Research, gives good advice on how to make a treatment decision.
Go to: http://www.ahrq.gov/consumer/qntool.htm
Develop a Treatment Plan with Your Doctor
Once you and your doctor or other healthcare provider have decided on a treatment, you can work together to develop a treatment plan—one you know you can stick to. Studies have shown that people who take an active role in developing their treatment plan have a better chance of staying on course and feel more satisfied with their care.
How to Make the Visit Work: You may want to prepare a list of questions before your visit, and then write down the answers you receive during your visit. Or, you might consider bringing along a friend or a family member with you. That way, if you have difficulty remembering everything that your doctor or other healthcare provider tells you, you can refer to your notes or ask your companion. If you have information that you have found on the Internet, bring it with you and ask your doctor or other healthcare provider to discuss it with you.
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Getting Support
Why Should You Get Support?
Sometimes the emotional side of illness is just as hard to deal with as the physical side. You may have fears and concerns or feel overwhelmed by your situation. Everyone has different ways of dealing with these feelings. Your attitude about your condition, your expectations, and how well you cope with your condition can play a big part in the success of your treatment.
Find out about the resources for support that are available to you:
Ask Family and Friends for Help
In general, having close and supportive ties with friends and family seems to have a positive impact on health. The people you're closest to are the most likely to give you the support you need. Even so, you may have trouble asking for help.
How to Ask for Help: If you do have trouble asking for help, think about specific ways in which people can help, and start by asking one person to assist you with the easiest thing on the list. You may be surprised at how glad people are to help.
Talk to a Counselor
A good counselor can help you cope with sadness, depression, and feelings of being overwhelmed. If you think counseling might be right for you, ask your doctor or other healthcare provider to recommend someone in your area.
Join a Support Group
Healthcare research has shown that support groups—groups of people with the same condition who get together on a regular basis to discuss their illness—often help people cope better with their condition.
Example: A study looking at women breast cancer survivors revealed that the women who participated in a support group lived longer and had a better quality of life than similar women who did not participate in the group. The women in the support group learned coping skills and they shared their feelings with other women who were in the same situation.
If you are interested in a support group, ask your doctor or other healthcare provider about available groups for your condition. If there is a fee for your group, you might want to check with your health plan to see if the cost will be covered.
Churches and synagogues, and other houses of worship, as well as senior centers, might also have groups that could offer you the social support you need. Ask your friends or family members if they know of any.
Use Online Support Services
Commercial Internet service providers offer forums and chat rooms for people with different illnesses and conditions. Other Internet sites may also offer similar types of online groups. These online self-help communities can help you connect with a network of people whose concerns are similar to yours.
Caution: Online support groups are places where people talk informally. All the treatments or discoveries you hear about may not be scientifically proven to be safe and effective. If you read about something interesting and new, check it out with your doctor or other healthcare provider. The more you know, the better you will be able to cope with your condition on a day-to-day basis.
Online Resource: The National Health Council has a list of Internet links to patient-based groups, or voluntary agencies, for more than 40 different chronic diseases and/or disabilities.
Go to: http://www.nationalhealthcouncil.org/aboutus/membership.htm
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Additional Resources
Be Informed: Questions to Ask Your Doctor Before You Have Surgery outlines important questions for patients to ask their doctor when a surgical procedure has been recommended.
Go to: http://www.ahrq.gov/consumer/surgery.htm
The National Institutes of Health offer Internet access to information on Government and private-sponsored clinical trials going on in the United States. This is the place to start if you are looking for opportunities to participate in clinical trials.
Go to: http://clinicaltrials.gov
Who Created This Document
This document was created through a partnership between the Agency for Healthcare Research and Quality (AHRQ) and the Kanter Family Foundation.
The goals of this partnership are:
- Improve healthcare decisionmaking by giving people information—including print and Internet resources—based on scientific research.
- Support the development of a national outcomes database that will be used by doctors and patients to determine which treatments work best for specific diseases and conditions.
- Encourage the standardization of health outcomes data throughout the healthcare system so that a national outcomes database can be developed and used.
Send Questions & Comments to info@ahrq.gov
From the Agency for Healthcare Research and Quality and the Kanter Family Foundation
December 1999
http://www.ahrq.gov/consumer/diaginfo.htm
