Hardly a day goes by without a story on television, in the newspaper, or on the Internet about new medical research findings. You might hear about a new drug to treat Alzheimer’s, a promising “cure” for cancer, or a breakthrough discovery in Parkinson’s disease. Or you might see articles about particular foods or dietary supplements that are said to promote health or prevent or slow the course of illness. Should you try to get these drugs for a family member who is sick? Should the person change his diet? Take more vitamins?
It’s confusing when research findings are contradictory. Conflicting health news stories—for example, drinking a glass or two of wine is good or bad for you, taking vitamin A may prevent one form of cancer but cause another to worsen—leave everybody, caregivers and health professionals alike, wondering what to do next.
It is possible to find your way through the massive amounts of information and misinformation and make informed decisions about your health, and the health of your loved ones. Reaching that point takes effort, awareness, and trust in your own powers of perception.
Before deciding whether to investigate news reports further, consider the following:
If, after considering these factors, the new finding or treatment seems possibly helpful to a loved one, then it’s time to get more details. The following guidelines can help you evaluate the research, separate fact from hype, and identify stories that may be misleading, inaccurate or incomplete.
First, try to find the original research article by contacting the website, newspaper, radio or television station responsible for the news story. This may be easier to do online or at a library, or by calling the institution that sponsored the research; a journalist may or may not get back to you. Once you locate the article, read it thoroughly. Keep in mind that understanding articles written by physicians or scientists for their peers (other members of the scientific community) can be a challenge. The writing style is often technical. Many of the words will be unfamiliar, and you should be prepared to look them up in a medical dictionary or glossary.
Here are some questions to help you assess whether an article might be of interest.
A news story about a treatment may lead you to do additional research on the web. Perhaps you’ll go online to find more about a family member’s illness, or to join a support or discussion group in which people like you discuss how they are coping and what treatments seem to help their loved ones.
Assessing health information on the web can be complicated. A few years ago, users could safely be told to steer clear of sites with commercial sponsorship. But that is not necessarily true today. Some commercial sites offer good health content for patients and professionals, and many nonprofit and university-run health sites accept commercial sponsorship in order to remain viable.
Although much of the information you find on the web will be valuable, it is important to remember that websites can spring up rapidly, and just as quickly disappear, leaving no one accountable for the false or misleading information that may have been posted on the site. Therefore, it is important to carefully assess any website that offers health or medical information. Following is a checklist to guide you.
A clinical trial is a research study with human volunteers to answer specific health questions. “Interventional” trials assess whether experimental treatments or new ways of using known therapies are safe and effective. “Observational” trials address health issues in large populations.
All clinical trials have guidelines about who can participate in a study, based on such factors as age, type of disease, medical history and current medical condition. Some trials seek volunteers with specific illnesses or conditions, while other trials need healthy volunteers.
Factors that allow you to participate in a study are called "inclusion criteria” and factors that keep you from participating are called "exclusion criteria.” The criteria are used to identify appropriate participants and keep them safe, and to help researchers ensure they will be able to answer the questions they plan to study.
Clinical trials are conducted according to strict scientific and ethical principles. Every trial must have a protocol, or action plan that describes what will be done in the study, how it will be conducted, and why each part of the study is necessary. It should include details such as criteria for patient participation; schedule of tests, procedures, and medications; and length of the study.
Clinical trials in the United States must be approved and monitored by an Institutional Review Board (IRB) to make sure the risks are as low as possible and don’t outweigh any potential benefits. An IRB is a committee of physicians, statisticians, patient advocates and other members of the community which reviews the protocol to ensure that the study is ethical and the risks are minimized.
People are recruited to clinical trials in various ways, including advertising, announcements in newspapers and other publications, and on the web. Caregivers and family members who use the web to locate clinical trials are faced with two important decisions: Is a clinical trial appropriate for the family member with a chronic illness? And if so, how do you locate a clinical trial in your area?
Clinical trials are sponsored or funded by different organizations, including medical institutions, universities, foundations, voluntary groups, pharmaceutical companies and federal agencies such as the National Institutes of Health. Trials can take place in different locations, such as hospitals, universities, doctors' offices and community clinics.
If you think a clinical trial might be appropriate for your situation—for example, your loved one seems to meet the inclusion criteria and the trial is taking place at a respected nearby institution—here are some points to consider:
Additional considerations include:
If the site offers a clinical trial, how and by whom will you be contacted? How soon after your inquiry will you be contacted? Is there a phone number or e-mail address provided for you to call if you are not contacted?
Before taking action—that is, before purchasing an over-the-counter remedy you heard about on the news or on the web, for example, or taking steps to enroll in a clinical trial—be sure to discuss the information with your healthcare provider. Decisions to try new treatments should not be made in a vacuum. Someone familiar with your family member’s medical and family history can provide valuable assistance in decision making. Your provider may also be able to answer some of your questions and give you information that was not included in the material you heard or read.
Your healthcare provider may be a researcher and suggest that your loved one participate in a trial. Make sure that the provider has no conflict of interest—such as a relationship with the trial’s funder—that might influence his or her recruitment practices. However, many researchers do have relationships with pharmaceutical companies which they are obligated to disclose to potential research participants.
Be aware that not every provider is up to date on the latest research, and that providers may also be influenced by previous clinical experience, personal bias, or links to pharmaceutical companies. Also, some providers are more receptive than others to discussing information you’ve found on the web.
To prepare for a visit with your healthcare provider, consider:
Remember, researchers are working continually to find cures or more effective ways to manage symptoms of serious health conditions. As a valued member of the care team, you are in an excellent position to follow up on promising leads, evaluate whether a new treatment might help your loved one, and work with your provider to decide whether participation in a clinical trial is warranted. Stay abreast of the latest treatment news, get the facts, and don’t give up hope!
There are many good resources on the web for information and support. The following sites are good starting points. Be sure to check the “links” section on these sites for other potentially useful sites. Also, many of the organizations listed offer a wealth of materials in print.
Health on the Net Foundation
National Institutes of Health A-Z Guide to Health Information
Alzheimer’s Disease Education and Referral Center
American Cancer Society
American Diabetes Association
American Heart Association
American Lung Association
American Parkinson Disease Association
American Stroke Association
Centers for Disease Control and Prevention
Food and Drug Administration
National Cancer Institute
National Heart, Lung, and Blood Institute
National Institute of Arthritis and Musculoskeletal and Skin Diseases
National Institute of Diabetes & Digestive &
National Institute of Allergy and Infectious Diseases
National Institute of Mental Health
National Institute of Neurological Disorders
National Parkinson Foundation
Osteoporosis and Related Bone Diseases National Resource Center
AIDS Clinical Trials Information Service
ECRI: Should I enter a clinical trial?
Office of the Inspector General of the Department of Health and Human Services
Clinical Trial Web Sites: A Promising Tool to Foster Informed Consent
Consumer’s Guide to Taking Charge of Health Information
How to Evaluate Health Information on the Internet
Family Caregiver Alliance
Administration on Aging
National Council on the Aging: Benefits Checkup
National Family Caregivers Association
National Institute on Aging
Family Caregiver Alliance (FCA) seeks to improve the quality of life for caregivers through education, services, research and advocacy.
Through its National Center on Caregiving, FCA offers information on current social, public policy, and caregiving issues and provides assistance in the development of public and private programs for caregivers.
For residents of the greater San Francisco Bay Area, FCA provides direct support services for caregivers of those with Alzheimer’s disease, stroke, traumatic brain injury, Parkinson’s and other debilitating health conditions that strike adults.
This fact sheet was prepared by Family Caregiver Alliance in cooperation with California’s statewide system of Caregiver Resource Centers, and reviewed by Jean E. Coleman, R.N., M.S., N.P., University of California, Davis Alzheimer’s Disease Center. Funded by the California Department of Mental Health. © 2004 Family Caregiver Alliance. All rights reserved.