You are here: Home Managing Your ... Medical Research ... Summary
Information about all aspects of finances affected by a serious health condition. Includes income sources such as work, investments, and private and government disability programs, and expenses such as medical bills, and how to deal with financial problems.
Information about all aspects of health care from choosing a doctor and treatment, staying safe in a hospital, to end of life care. Includes how to obtain, choose and maximize health insurance policies.
Answers to your practical questions such as how to travel safely despite your health condition, how to avoid getting infected by a pet, and what to say or not say to an insurance company.


The amount of medical information currently available on the internet is truly astounding. Reliable information that a few years ago was only accessible to doctors and other healthcare professionals is now available to anyone with an Internet connection. However, the Internet contains a lot of outdated and even false information.  When it comes to health, misinformation can be deadly. It is critical to learn how to tell the difference between information you can rely on and "information" you can't.

Consider the following tips:

  • Keep your goals and personality in mind. It is easy to get diverted to information that doesn't apply to you.
    • Are the basics enough?
    • Does a lot of information send you into overload?
    • Can you keep in mind that statistics indicate what has happened to large numbers of people historically and that they do not predict the future or what happens to any particular individual?
    • Do you assume that worst case situations is what will happen to you?
  • Know what to look for when doing medical research
    • For a checklist of factors to help determine reliability of information on a particular site, click here.
    • For a checklist to help determine reliability of a particular study, click here.
  • Before relying on information from a website, check  the reliability of the site. To learn how, see: A Check List To Determine Reliability Of Information On A Web Site
  • For a list of excellent sites to use as a starting point for:
    • Medical research, click here.
    • Medications, click here.
  • Keep in mind that the internet is not the only place to do medical research. There are a variety of sources where you can obtain medical information. Sources to consider, as well as pointers about each, are discussed in another section of this article.
  • Also keep in mind the old adage: trust but verify.
  • Do not look to the internet for a diagnosis. When it comes to a diagnosis, it is preferable to seek the opinion of a doctor or other health professional.

If you would prefer to hire a company to do medical research (including all the treatments available for your situation) see: Medical Research Services

NOTE: For free, Medivizor offsite link provides personalized health information about cutting-edge research, treatment options, relevant clinical trials, and more, specifically for the user's situation. It also provides free updates.

Using Information Wisely

  • Keep track of what you learn and all questions that come up from your research.  Before you go to your next medical appointment, it is advisable to prioritize your questions in order of your preference so you at least cover the ones that are most important to you. (We provide a "Prioritizer" where you can keep track of your questions. Before you go to your next medical appointment,  you can reorder your questions with the touch of a button.)
  • Ask your doctor your questions and always bring to his or her attention new information. Your doctor will help you determine each of the following:
    • Reliability of the particular information.
    • Whether the information applies to you. If the information does apply to you, how it applies.
  • If you come across articles that are of interest: Consider sending the articles to your doctor before the next appointment so your doctor has a chance to consider the information and perhaps do some additional research before you appointment. If you do not send the article ahead of time, take a copy for the doctor with you. NOTE: It is advisable to limit the articles you show your doctor to a maximum of 3 at any one appointment. 

Strong emotions are likely to surface as you do research. There are tips to keep them in check. Don't let them keep you from learning what you need to know about your condition or possible treatments. To learn how to cope with emotions, click here

* For more information, see: Pros and cons about researching on the internet, 

Tips To Help Determine Reliability Of A Particular Study

Scientific knowledge constantly evolves as new evidence addes to the existing body of research. Acting on misinformation can be very harmful. Be sure to check all information you learn with your doctor before making any change based on it.

To help find reliable information, consider the following to help determine reliability of a particular study:

  • Was the study published? If so, where?
    • If the study is not published in a peer reviewed journal beware. Peer review journals are journals where the information has been reviewed by experts in the field prior to publication. For example, one of the best known peer reviewed journals is the New England Journal of Medicine offsite link
    • Many findings which are reported at medical meetings make their way into the press. Such findings are frequently preliminary, and are usually not peer reviewed.
  • What is the source?
    • Studies, trial data and statistics provided by government agencies such as the National Institutes of Health, the Food and Drug Administration, or a well-respected medical institution (such as Johns Hopkins University or Medical Center), or a professional organization such as the American Medical Association, are likely to reflect accurate and unbiased information. 
    • Information provided by a group or organization with which you are unfamiliar, should be given closer scrutiny. 
  • Who was the lead researcher? 
    • The stronger the researcher's background, the more likely the research is reliable.
  • Who paid for it?
    • According to Consumer Reports on Health, pharmaceutical companies provide almost 60 percent of all biomedical research funding in the U.S.
    • There is of course a potential conflict of interest if the funder is a pharmactueical company with a direct financial interest in the outcome of the research. 
    • If the funder has a potential conflict of interest, that does not mean the findings are irrelevant. It only means to be cautious.
  • How many people were involved in the study?
    • The more people, the more reliable the results. For example, the results of a study involving 10,000 people are likely to be more reliable than a study involving only 20 people.
  • What the study a controlled clinical trial or an observational study?
    • The gold standard is a controlled study where some people receive the treatment in question and some don't.
    • Observational studies compare llarge populations of people and look for connections between habits or behaviors that they did independently and various health outcomes. Observational studies do not prove causal effect.
  • The period of time over which the study occurred.
    • The longer the period of time over which the study is conducted, the more likely the information is to be accurate. 
    • Beware of information based on limited studies, such as a "study"  over a few month period.
  • Is the study up-to-date?
    • It is important that information is timely as well as accurate -- particularly since we are living in a time when medical information can change very quickly.
  • What do other sources say about the information?
    • Check to see if there are published reports about the study and what they say. Governmental agencies and reputable organizations may also have commented on the study or the published result.

For information about how to do medical research on the internet, click here.

How To Cope With The Emotions That Accompany Medical Research

Reading and hearing cold, hard details (with worst case scenarios) can be painful at times. It helps to understand the emotional fall out often provoked by knowledge and to prepare for it by finding ways of putting what you learn into perspective. For example:

  • Focus on the survival rate, rather than the number of people who die. If 15% of people die, that means 85% survive. 
  • Understand the degree of risk and of certainty. 
  • Consider the facts to be a challenge instead of a verdict. You are an individual. There is no way to predict what happens with any individual.
  • There is no certainty. This uncertainty is reason for hope. If the facts prove otherwise, you can deal with them as they come. 
  • Research literature by its nature will always be behind the best current available treatments. Thus your odds are likely to be an improvement over what you read in the studies.
To learn how to deal with various emotions, see: What Do I Do With All These Emotions?

Pros And Cons Of Doing Medical Research

There are risks and benefits to researching your own disease.


  • You may discover something your doctor is not aware of.
  • The process of doing research helps you feel in control. 
  • The more you know, the more informed a decision you can make. 
  • If you are insured by a managed care type of insurance policy (such as an HMO): you may not be told about treatments or clinical trials outside the insurer's network.
  • Doing the research may be difficult for a layperson who is not familiar with medicine and scientific method. (A friend can do it for you. Or you can hire a research service). 
  • Doing research defines you to your doctor more as a collaborator than a passive patient. (This is the preferred relationship in any event. There is no certainty in medicine).
  • You may misinterpret what you read. (This is one of the reasons it is critical to discuss all your findings with your doctor).
  • Difficult emotions may accompany your research. (There are methods for coping with emotions).

Sources Of Medical Information To Consider

Your Doctor Or Hospital

  • Your doctor's office or hospital/treatment facility can be one of the best information sources and should serve as your starting point. 
  • Your doctor should be able to provide books, brochures, and audio or videotapes. In addition, hospitals often offer instructional seminars and educational classes geared toward specific diagnoses and/or treatments.

A Pharmacist

  • Pharmacists are often overlooked sources for information about prescription and over-the-counter drugs. In addition to answering questions, they may be able to supply you with literature. For information about choosing a pharmacist, click here.

Disease Specific Non Profit Organizations

  • All major diseases have nonprofit organizations that provide an enormous amount of valuable information about diagnosis and treatment options, as well as other social services. Most such organizations have their own very comprehensive websites.
  • Once you obtain the information you're looking for, consider subscribing to the newsletters, if any, of such sites. They will keep you to date about the latest developments. (To locate a disease specific organization of interest, click here.)

Support Groups

  • A support group is a great place to obtain information from others who have been diagnosed with your condition. In fact, doctors have told us that members of support groups are sometimes more up-to-date on the course of a condition and the results of various treatments than the doctors themselves.
  • Ask your doctor, hospital or social worker about local support groups for your condition.
  • NOTE:
    • Particularly with medical information you learn from another lay person, keep in mind the adage: Trust but verify.
    • For information about support groups, including how to find one that works for you, click here.

The Federal Government

A number of federal agencies offer free, comprehensive treatment guidelines and a wealth of practical information about a variety of conditions:

  • National Health Information Center in Washington D.C. is a health information referral service putting health professionals and consumers in touch with those organizations that are best suited to answer their questions. NHIC refers to more than a thousand organizations providing medical information. Call 800.644.6627 or offsite link
  • National Guideline Clearinghouse is sponsored by the Agency for Healthcare Research and Quality, and makes clinical practice guidelines available online for many conditions. The site is geared toward healthcare providers and medical researchers but can be accessed by anyone. The information is written in medical terminology so you may need an interpretation from your doctor. Providing your doctor with the information will insure that she is aware of the latest treatment guidelines. See offsite link
  • Medline Plus is a division of the U.S. National Library of Medicine. The Medline Plus Internet site provides a wealth of information as well as links to medical publications such as journals and periodicals. See offsite link 
  • National Library of Medicine call 888.346.3656 or offsite link
  • Food and Drug Administration call 888.463.6332 or offsite link 
  • Agency for Healthcare Research and Quality call 301.594.1364 or offsite link
  • Centers for Disease Co

Medical Research On The Internet

The Internet contains an enormous amount of medical information and medical and health related sites, and you can't beat the convenience factor. In fact, according to an on-line survey, about 70% of web-savvy women said it is easier to get health information online than from their own doctors.

Use caution when evaluating information you find on the internet.

  • Be aware of the source of the information and any possible bias. When you are on a site, click on "About Us" to learn about the site's sponsor.
  • Government and disease specific non-profit organizations are a good starting point because they are most likely to have accurate and reliable information. In addition to the links provided in the federal government section above, try offsite link. It allows you to search by topic and provides links to virtually every health related government organization online.
  • Look for symbols from organizations that certify a site has met the organization's standards, such as from HON (Health On The Net Foundation) or URAC (Utilization Review Accreditation Commision).
  • Check the date of the last revision to make certain the information is up-to-date. If you want to insure that you are receiving the latest information, consider requesting Internet newsletters or choose to receive e-mails that will inform you wen a site topic has been updated. If you have not disclosed your condition, do not use an e-mail address that can be accessed by someone who does not know.

To learn how to do medical research on the internet, click here.  For information about services that will do the research for you, click here.

Medical Research In Libraries

  • Search medical books, journals and other publications about your condition.
  • In many libraries, the research librarians will do a computer search of medical databases for your condition or direct you to the appropriate journals. Some libraries will print or photo copy an article for you (often for a fee.) Note that many libraries now provide free Internet access for the public.
  • If your library does not have the information you are looking for, call the National Network of Libraries of Medicine at 800.338.7657. 

Hired Medical Research Assistance

  • If you feel that you don't have the time or are not up to the task of doing your own medical research you may choose to hire a research assistant. For information about research services, click here
  • Also consider calling your local medical school, public or university library, to inquire about research assistance.