“HEALTH AND MEDICAL INFORMATION”
PATHFINDER
This pathfinder is designed to help you find answers to medical questions before and after you see a physician. Studies show that the more informed you are about a medical problem that your treatment and care options improve. Some 93 million or 80 percent of adults have used the Internet to learn about one major health topic. Many, however, type words such as “breast cancer” and retrieved 4.3 million pages to sift through. Listed below are Internet sites and print resources that will give you valid, objective, and reliable information.
LEARNING ABOUT THE PROBLEM
If you need to know more about a medical problem, disease, or some of the terminology used to describe it, here's where to start. Search a sufficient number of these sites until you begin to see a repetition in the information. This is the best way to know that your information is valid.
American Academy of Pediatrics
http://www.aap.org
This site includes a search box for typing in key search terms. Remember to use the Boolean operator <and> with the terms to narrow your search. You can also find a list of the latest books, pamphlets, and videos on a variety of conditions and diseases pertaining to children.
Familydoctor.org
http://familydoctor.org
One of the easiest sites to access, this Web address is a subsection of the American Association of Family Physicians. Click on the “Conditions A to Z part or one of the separate sections that pertains to either Men, Women, Parents & Kids, or Seniors. This is an excellent starter site because it is so easy to use and the information is understandable.
Healthfinder by U.S. Department of Health and Human Services
http://www.healthfinder.gov
The Department of Health and Human Services produces this site for consumers, with links to online publications, support groups, and other agencies. The basic health information offered here is available in English and Spanish. Health topics are organized by age, race, and ethnicity along with information geared towards caregivers and parents.
Healthinfoquest by National Network of Libraries of Medicine
http://www.nnlm.gov/healthinfoquest/
The National Network of Libraries Medicine has put together an excellent tutorial for users seeking medical information. The site offers sample searches on common medical questions, pathfinders, help with reference interviews, and links to good health sites. Healthinfoquest pathfinders are designed for librarians and health information specialists. The site contains an index, site map and site help.
MayoClinic
http://www.mayohealth.org/
This site, based at the Mayo Clinic, has a wide variety of resources with special sections on Women's Health, Cancer, and Diet and Nutrition. You can can also register to receive a free weekly newsletter, search for information on specific drugs, or just read the medical news of the week.
InteliHealth
http://www.intelihealth.com/
Based at Johns Hopkins University , the InteliHealth site provides links to pages from the American Medical Association site and the National Institutes of Health site, as well as an “Ask a Doc” service, information on prescription drugs, and a link to MedLine databases.
Go Ask Alice by Columbia University School of Public Health
http://www.goaskalice.columbia.edu
Health educators from Columbia University have created an excellent site with health information for young adults. Users can search the site for the latest on general health, relationships, sexuality, sexual health, fitness, nutrition, emotional health and drugs. Questions can be submitted anonymously since user addresses are scrambled before going into Alice 's email box.
MEDLINE by U.S. National Library of Medicine
http://nlm.nih.gov
The National Library of Medicine's site offers a wealth of information. PubMed indexes the world's largest collection of academic medical journals. MEDLINEplus provides consumer health information in several languages. There are links to government agencies, such as the various departments of the National Institutes of Health, the Centers for Disease Control and Prevention, and the Food and Drug Administration, and resources about the history of medicine.
The National Women's Health Information Center by U.S. Department of Health and Human Services
http://www.4woman.gov
This is a federal government resource with current information about women's health issues written in English and Spanish. Features of the site include a FAQ segment, call center information, important resources and educational campaigns.
NOAH by New York Online Access to Health
http://www.noah-health.org
The New York Academy of Medicine provides consumer health information on a wide variety of topics in English and Spanish. This site is a gateway to other health sites.
CAPHIS by the National Library of Medicine
http://caphis.mlanet.org/consumer
The Consumer and Patient Health Information Section of the NLM offers a top 100 list of quality health web sites within categories that include general health, women's health, men's health, kids and parenting guidance, seniors' sites, specific health problems, drug information, sites for health professionals as well as an “Other Useful Health Site” category. The site maintains bibliographies of current books on consumer health topics, a newsletter with book reviews, and discussion groups.
National Cathedral School Print Resources
(Housed in the Reference Room)
All are written for the layperson.
R 616 American Medical Association Family Guide
A512
Excellent resource for symptoms, risks, and treatment options.
R610 Harvard Medical School Family Health Guide
H339
Organized by body system (respiratory, nervous, muscular, etc.), this outstanding text is excellent for an initial consultation.
R 615.03 The PDR Family Guide to Prescription Drugs
P39f
The best reference drug guide, this book provides you with information
about why a drug is prescribed, important facts about it, how you should take the drug, and all the possible side effects.
R610 The Merck Manual of Medical Information
M35
Best resource to consult for learning basic information about any conceivable medical condition. They also have a free, online version at: http://www.merckhomeedition.com/
LEARNING ABOUT TESTS AND SURGERY
Harvard Medical School Family Health Guide
http://www.health.harvard.edu/fhg/diagnostics.shtml
Click here if you want to know why a test is being done, how it is going to feel, what are the risks, how to interpret the results and what affects the test. All you have to do is choose the correct body system (nervous, respiratory, muscular, etc) to start.
YourSurgery.com
http://www.yoursurgery.com
If you are up to it, this site explains surgical procedures, patient preparation, recovery, possible complications and treatment alternatives. The graphics are excellent.
UNDERSTANDING A DIAGNOSIS
If you think that you have a very serious or life-threatening disease, do the following:
1. Take a friend or relative with you to meet with the doctor. A recent study found that patients quickly forget as much as 80 percent of what a doctor told them.
2. Become familiar enough with some of the disease terminology from accessing the above sites so that you or your friend can pose questions that are specific to your current condition.
3. Write out your questions and leave room to record the doctor's responses.
Getting a Second Opinion
A recent study of biopsy slides at Johns Hopkins Medical Center published in the December 1999 issue of the journal Cancer showed a surprising rate of misdiagnoses. Second opinions are particularly warranted with “red flag” medical treatments that have shown clear evidence of abuse such as heart treatment, post-heart-attack care, mammography interpretation, and long-term drug therapy. Seeking a second opinion about tests results, diagnosis, and proposed treatment is also sometimes required by your insurance company.
Here are some tips for getting a second opinion:
1. Ask your doctor to recommend another physician or specialist for another opinion. Don't worry about hurting you doctor's feelings. Most physicians welcome a second opinion, especially when surgery or long-term treatment is involved.
2. If you don't feel comfortable asking your physician about whom to go to for a second opinion, look at the sites listed below, contact another doctor whom you trust, ask nurses who have cared for you, our school nurse, or call university teaching hospitals in your area for the names of some specialists.
3. When you have a name, ask your physician to make the referral for you so that you can get an appointment in a timely fashion.
4. Check with your health insurance provider to make sure they will cover the cost of a second opinion. If they do not and the condition is serious, consider paying the fee yourself. Tell the doctor that you are not covered by insurance and negotiate a possible reduction of the fee. If you are interested in finding a doctor within your health care plan, a listing of CareFirst BlueCross BlueShield's preferred providers can be found on their website at www.carefirst.com . Kaiser Permanente participants may access physician information on the website www.kaiserpermanente.org , or by contacting Human Resources (x2348) for the guidebook .
5. Arrange to have your medical records (which you own) sent to the second opinion doctor before you visit. This gives the new physician time to look at your records and may help you avoid repeating medical tests.
6. Always request copies of your medical records for your own files. Make copies of them and either mail, fax or drop them off ahead of time. Call the nurse or receptionist several days before your appointment and ask him/her to confirm receipt of them.
7. Learn as much as you can about your condition by using the links cited above. Some teaching hospitals and medical libraries are open to the public if you need to find and photocopy medical journal articles. List all your questions and concerns and bring the list and someone else (if need be) to the consultation.
8. Take a list of your current medications and the recommended dosages.
9.
Never rely upon the telephone or Internet for a second opinion. You need to be seen by a physician. Remember to get a copy of this doctor's report and have it sent to your primary care physician.
10.
If you are in an HMO that will not allow you to seek a second opinion outside, search for the Health and Safety Code of the state you are in. Sometimes states have enacted laws that give patients rights to a second opinion outside of an HMO.
WHERE TO FIND THE BEST DOCTORS AND HOSPITALS
Your choice of doctor and hospital (if you need surgery or treatment) can sometimes determine how quickly and how well you recover. Consumer Reports surveyed 21,000 about their recent hospital experiences and found tremendous variation. A 2001 study of health care quality by the National Academy of Sciences found that 3 to 4 percent of hospital patients experience some kind of “adverse event” caused by medical error or mismanagement.
Choosing a good hospital and doctor are inextricably intertwined. If you wish, for example, to have your surgery performed at Johns Hopkins University Medical Center , you must identify and be treated by a surgeon with privileges at JH.
If your medical condition is a serious one, try to seek a second opinion from an outstanding physician who has privileges at the best hospital in the area. There are many excellent physicians who are not affiliated with a teaching or university hospital. Many of them will list their credentials on a Web site. In case you can't find background information about them, you can consult the following sources:
Directory of Medical Specialists
Available at large public and all medical libraries in print or electronic form, this standard reference tool will provide you with background information about a physician, particularly whether he/she is board certified to practice a medical specialization.
Washingtonian
http://washingtonian
Once a year, Washingtonian magazine lists the best doctors in the area for all types of medical specialties. Their list is based on a survey of local doctors who recommend their college agues in various areas of specialization. The list also indicates which hospitals give each doctor privileges.
Best Hospitals in the United States http://www.usnews.com/usnews/health/hosptl/tophosp.htm
U.S. News & World Report Best Hospitals by U.S. News and World Report Magazine Site lists rankings of best hospitals in the U.S. ; Details on ranking methodology are explained; Click on a disorder to see top ranked hospitals in that field; many health related articles included; Easy to navigate through site; An advanced search tool is included.
ALTERNATIVE MEDICINE AND NUTRITION RESOURCES
More physicians are realizing that many standard care treatments can be complemented by alternative therapies and good nutrition. There is only one caveat. Make sure that you tell your primary care physician about any alternative treatment that you are considering. Ask your doctor if there are any contra indications to pursing such a course.
The Alternative Medicine Homepage by Charles B. Wessel, University of Pittsburgh
http://www.pitt.edu/~cbw/altm.html
The Falk Library of Health Sciences at the University of Pittsburgh offers this gateway site with information on complementary, alternative, innovative and integrative therapies. Links to other Internet sources include databases, government resources, practitioner directories, listservs and alternative medical sources for AIDS and HIV.
CAM on PubMed by the National Center for Complementary and Alternative Medicine and the National Library of Medicine
http://www.nlm.nih.gov/nccam/camonpubmed.html
This National Institute of Health agency is dedicated to exploring complementary and alternative ( CAM ) practices in the context of rigorous science. The site lists the current and ongoing clinical trials . Users can search by treatment (i.e. acupuncture), disease (i.e. cancer), or dietary supplement (i.e. kava). This site offers excellent information and directories of further resources.
Nutrition Navigator by Tufts University
http://www.navigator.tufts.edu
Tufts University reviews and rates sites offering nutrition information on the Web. This site provides links to sites specializing in nutrition for women, men, family and seniors. Other links are geared towards educators or journalists. weight management, special dietary needs, and other hot topics are covered. The Nutrition Navigator rates each site as “Among the Best,” “Better than Most,” “Average,” or “Not Recommended.”
CLINICAL TRIALS
When traditional medical avenues are no longer effective, there are some comprehensive sites that offer excellent information about clinical trials and experimental treatments.
The Cochrane Collaboration Consumer Network by The Cochrane Collaboration
http://www.informedhealthonline.org/item/aspx
This Australian organization helps people understand research reports and clinical studies by explaining how they are conducted and what the statistics mean. The site includes the latest health hot topics and articles. Provides links to clinical trials in the United States .
Oncolink by University of Pennsylvania Cancer Center
http://www.oncolink.upenn.edu
The University of Pennsylvania Cancer Center provides up-to-date information about cancer and links to relevant sites. This site provides links to ongoing, current clinical trials . Other topics include cancer news, types of cancer, treatments, coping, cancer research, “ask the experts,” and a quick search.
Rosenthal Center for Complementary and Alternative Medicine by Columbia University Health Sciences
http://cpmcnet.columbia.edu/dept/rosenthal
This center at the Columbia University School of Medicine offers assistance with integrating alternative therapies into medical treatment. There are special pages devoted to pediatric and adult cancers. This site provides links to clinical trials and ongoing research projects. Also hosts a calendar of courses and events sponsored by Columbia University .
Clinicaltrials.gov, a service by the National Institute of Health and developed by the National Library of Medicine
http://www.clinicaltrials.gov
Clinicaltrials.gov provides regularly updated information about federally and privately supported clinical research in human volunteers. Offers information on each trial's purpose, who may participate, locations and phone numbers for more details.
FEE-BASED MEDICAL SEARCH SERVICES
For prices ranging from $195 to $550, medical search services will help you find the latest information about a disease including reports listing conventional and cutting-edge treatments, medical experts, clinical trials, and alternative therapies. Be sure to inquire if they send you the entire article or just the citation and abstract. The latter type of service will still require a visit to a medical library or use of an online document delivery service so that you can read the entire article. Tara Parker-Pope, health columnist for the Wall Street Journal, cited the ones listed below. If the price for this type of service is beyond your budget, you may wish call a local medical school. Many medical librarians will search the databases mentioned above for a reduced fee for non-university clients.
Health Resource.Com
http://www.thehealthresource.com
Covers conventional, experimental and alternative treatments. Price range $295.00-$395.00
CanHelp.com
http://www.canhelp.com
Also recommends doctors in other countries. Price range $400- $500
Cancerdecisions.Com a/k/a Moss Reports
http://cancerdecisions.com
Geared more towards alternative and experimental therapies. Price $297.00
FindCure.Com a/k/a Schine On-Line
http://findcure.com
Offers detailed reports – including clinical trials by region Price $195
Canceradvisors.org
www.canceradvisors.org
Lists clinical trials compiled by oncologists Price $400
Compiled by K. Craver, E. Mullen , E. Chau , and J. Foust
January 2004