National Family Caregivers Association

Monday Mar 15, 2010

Finding Reliable Health Information Patricia L.Tomsko, MD, and Sandy Padwo Rogers

Few would argue that communicating with a physician can be, at times, a most intimidating experience. Try as we might to understand what a physician explains during a visit, we often leave with more questions than we had going in. If we are attempting to comprehend information regarding a new illness or course of treatment, this can be a particularly stressful time. In fact, it is usually after we leave the doctor's office that our lack of understanding becomes clear. For those who have ever found themselves in this position, knowing that information is available after you leave the physician's office may help alleviate some of this stress. It also may help you become a more educated and active participant in your loved one's and your own health care decisions.

Where Do You Turn?

There certainly is no dearth of health information available to the lay person. Everywhere we turn, we are bombarded with the medical scoop du jour. Just turn on the nightly news, open up the latest edition of your favorite magazine, or sit down for coffee with a friend and you will find yourself at the center of the most recent medical buzz. But how do we separate fact from fiction? Where do we go when we need accurate and reliable answers from an unbiased source? There are a number of resources available to the public, many of which are just a mouse click away.

The Internet

The world wide web has become our instantaneous link to a wealth of information and ideas. Due to its very nature, however, it is also a source of vast amounts of misinformation. Therefore, it is extremely important when working online to get into the habit of using the same types of safeguards you would use when doing research in a library:

Stick with reputable organizations. Go to web sites of governmental agencies, non-profit organizations, and other entities known for their integrity and their public service orientation.
Steer clear of information presented by groups with whom you are unfamiliar. Just because someone can publish information online doesn't mean that individual is an expert. The Internet has made it possible for just about anyone to publicize their ideas regardless of whether or not they are based on scientific evidence.
Try to find more than one source for the information being presented. If the information you find is reliable, then confirming it on another web site should pose no problem.
Keep in mind the source of the information being presented to you. For instance, a pharmaceutical company, while presenting valuable prescription drug information, is also a commercial entity and may have a bias toward a particular drug. The same would be true of any commercial site- keep in mind any potential bias that may exist on the part of a site's sponsor.

Debbie Skolnik, MLS, library director at Suburban Hospital Healthcare System, located in Rockville, MD, found that so many people were asking for assistance researching health topics online that she compiled a list of quality patient education Internet sites. While this list is by no means complete, it is a starting point for anyone who wishes to use the Internet to do health research. Along with Ms. Skolnik's original list, which we gratefully share, we have added a few web sites that we have found particularly helpful.

www.medlineplus.gov
Produced by the National Library of Medicine, this site has many links to good quality consumer health information, including dictionaries, drug information, and topic-specific information. The site also has an excellent set of interactive health tutorials.

www.healthfinder.gov
Produced under the auspices of the National Institutes of Health, much of the content for this site is from the NIH itself. The site also has links to other quality health-related web sites. Patients may also appreciate a link to health information in Spanish.

www.cancer.gov
A product of the National Cancer Institute, this site is an excellent starting point for any cancer-related topic. Some documents are written specifically for the lay person; some for the medical professional.

www.noah-health.org
NOAH (New York Online Access to Health) is another good consumer health web site that makes much of its content available in Spanish as well as English.

www.yoursurgery.com
Although this is a commercial site, it has good descriptions of surgical procedures for the patient.

www.health-insight.harvard.edu
This site is subtitled "A Consumer's Guide to Taking Charge of Health Information." It offers ten questions to help the individual make sense of health information and understand the risks and benefits of using information to make better health care decisions.

www.caphis.mlanet.org/consumer/index.html
The Consumer and Patient Health Information Section of the Medical Library Association offers links to its Top 100 health care web sites, which are broken down into such categories as women's health, men's health, kids and parenting, seniors, and specific health problems. Clicking on this one site can lead you to just about anywhere you want to go in a wider Internet search.

www.familydoctor.org
From the American Academy of Family Physicians, this site offers health information for the entire family, including sections on healthy living, self-care, and herbal and alternative remedies. There's even a dictionary of general medical terms. Information is available in Spanish as well.

The Library

Your hospital library is a valuable source of health information. Stocked with the latest medical journals and staffed with knowledgeable personnel, this is one resource that should not be overlooked, especially when you or your loved one is in the hospital. The medical librarian can help you navigate through all of the latest medical literature. If you or a loved one is faced with a hospitalization, the hospital library can be a tremendous resource when making critical health care decisions. While not all medical libraries are open to the public, a quick check with your local hospital or health care center will tell you the closest library you can access.

In addition to hospital libraries, most community libraries have health information sections that are readily accessible and user-friendly. If you don't have access to the Internet at home, you may be able to go online at your community library, where you can also receive the expertise and assistance of the staff. Call your local library to find out where the health information section in your area is located and which branches of your library system provide Internet access.

Researching Your Prescriptions

Keeping track of a growing list of prescription and over-the-counter medications can be a daunting task for anyone, especially family caregivers whose loved ones may well be taking medications for multiple conditions. Each time a new drug is added to the mix, you begin a new round of questions regarding dosages, side effects, and drug interactions. There are two web sites you may find helpful when you want to obtain information about medications: www.drugchecker.com and www.rxlist.com are both commercial sites that provide detailed drug information for the average consumer. They also provide information on herbal remedies and other types of alternative medicine, treatment options that many patients don't often discuss with their physicians, but which can have profound interactions with prescribed medications. It is extremely important to tell physicians about all of the remedies being taken, including herbal supplements. Keep in mind that the best sources of information about prescription questions are physicians and pharmacists. They are the ones who are familiar with your loved one's medical history and current medications. Don't forget the same kind of information-sharing is important between you and your doctor, too.

While web sites may be helpful in providing information about a particular drug or other type of alternative therapy, it is imperative that you not make changes to prescribed drug therapy programs without first consulting with the prescribing physician. Altering a prescribed course of treatment based on information gathered online can be detrimental to your health.

Communicating With Your Physician

Feeling empowered with information is a goal we all share. There may be no time when that desire is felt more keenly than when making decisions regarding a loved one's health care. Whether conducting research online, at a hospital or community library, or through friends and family members, remember that the information you glean is a starting point for a discussion with your physician. You may find it helpful to bring a copy of your research with you to your next visit so that you can leave it with your physician. Be open to the possibility that your physician might interpret the information differently than you do. Don't be afraid to ask questions about his/her interpretation. Find out what other resources he/she recommends you pursue. Most importantly, communicate to the physician that it is your goal to work as a member of the health care team. The more educated you are, the more productive a member of the team you can be.

Patricia L. Tomsko, MD, is board certified in family practice, geriatrics, and hospice and palliative medicine. She is managing partner of Rock Creek Geriatric Medicine in Montgomery County, MD. Sandy Padwo Rogers is communications director for Rock Creek Geriatric Medicine.