Information Resources > From the Director

Becoming an Informed Consumer

Anne Coscarelli, Ph.D.

A cancer diagnosis creates a significant and multi-layered burden for most patients and their family members. Most people have little or no understanding of the disease and its treatment options and often scramble to gather information so that they can make the best decisions possible. At all stages of diagnosis, treatment and recovery, gathering information is an important aspect of coping with the disease. This process is never easy and it becomes more difficult as the patient has to deal with the side effects of treatment, strong emotions, fears and worries, financial pressures and not feeling well. Yet being an "informed consumer" is one of the most important ways that a patient and her family can cope with the disease. Information about cancer, however, is growing at exponential rates through books, newsletters, pamphlets, professional journals, newspapers, television, word-of-mouth, friends and family, and friends of friends and family, videos, audio tapes, and the Internet. The availability of so much information creates another "job" for people with cancer, one that is formidable and for which most people have little training. In addition to becoming a "cancer survivor," you also have to become a "sifter of information and seeker of truth."

How does a person who has been diagnosed with cancer discern what information may be useful and what to disregard? And why does it matter?

There is as much misinformation about cancer and its treatments available at your fingertips as there is well-documented and sound advice. Cancer is a life-threatening disease. The decisions you make about what to believe and which treatments to follow can affect your life outcome, as well as your financial status and emotional and physical well being. You probably are like most patients in that you and your loved ones have a strong desire to preserve both the quantity and quality of your life, and you will make decisions that will affect both. These decisions often will be shaped by the information that you have available to you. It becomes important, therefore, to look carefully at the sources of this information and how you and your loved ones process it.

Sources of information

What are the different sources of good information and bad information?

Good information	Bad information
Internet	Internet
Chat rooms	Chat rooms
Books	Books
Television	Television
Newspapers	Newspapers
Pamphlets	Pamphlets
Video and audio tapes	Video and audio tapes
Other cancer survivors	Other cancer survivors
Family members, friends, co-workers	Family members, friends, co-workers
Health care professionals	Health care professionals

These two lists are the same. How can you determine which information to trust?

The first step in becoming an informed consumer is to develop a sense of what constitutes quality information. In my opinion, quality information is information that is based on reasonable data and seems logical based on everything else that is known.

What is reasonable data?

Reasonable data is information that is obtained through a process called the scientific method. This process encompasses developing new theories, asking questions, testing hypotheses that support or reject the theories, testing new hypotheses, obtaining new understandings and eventually leading to breakthroughs in understanding. The scientific method entails continually posing new questions and then designing and carrying out new studies to attempt to answer those questions. A single study does not answer all the questions, and each study has strengths and weaknesses. Reasonable data accumulate over time. New studies modify old information, thus making the accumulation of reasonable data a changing process.

While some may question the scientific method, it is the method by which the medical and scientific communities operate and it has brought about tremendous improvements in cancer treatment, quality of life and survival. It is not a perfect process - there always will be problems - but well-designed and well-researched theories have led to the breakthroughs in understanding that have brought cancer research and treatment to where it is today.

Quality studies usually are those that are based on a specific theory, that include a large number of participants (known as a sample) and as little bias as possible. Studies can be influenced by many different sources of bias ranging from the type of subjects used to the method by which the data are gathered. How the information is analyzed, reported and interpreted are other factors that can affect the integrity of a study. Most investigations are reviewed by scientist peers to determine whether or not they have scientific merit. This review takes place before the findings or conclusions are published in professional journals and serve as a check and balance. A flawed study can be more misleading than no study at all. The lay press recently has reported on some of these studies.

In graduate school, I prepared to do scientific research by taking many courses on research design and bias, which is standard course work for scientists no matter what the discipline. I learned the different ways to conduct studies, the advantages and disadvantages of different types of research methods, how to sample populations, what kinds of errors are common and how to reduce the likelihood of making those errors. I share this information with those of you who have not been trained as scientists because it illustrates that designing and carrying out a good scientific study is not a simple process, and not everyone has the knowledge or the experience to do so. Even when a scientist is well trained, problems can and do arise. Almost all studies have faults, which is why reasonable data are based on the accumulation of a body of studies - not just the results of one investigation. Time, therefore, becomes an important part of the scientific process.

Patients frequently express their frustration with the fact that studies have not been conducted on the very specific questions to which they need answers so that they can judge what is best for them as individuals. This frustration is further complicated by the fact that one rarely can draw a conclusion for oneself from the findings of larger studies. These studies may indicate what will happen to the group as a whole, but do not speak to how one person might be affected. For example, if you ever have had an unusual side effect from a drug, it doesn't matter to you that the studies suggested that such a side effect was unlikely. You have the side effect and you have to deal with it.

Anecdotal information

Despite its many limitations, the scientific method is our best means of producing reliable conclusions that can be reproduced in multiple studies over time with the same results. The information that is gathered through the scientific method is information that patients can regard as tested and useful. It is important to distinguish this type of information from that which is based on one person's experience. This is called anecdotal information and it is not based on the scientific method. The scientific community uses anecdotal data in the very early stages of research when they are developing theories and hypotheses, but beyond that, anecdotal information usually has little or no value and can be harmful. I want to raise caution about anecdotal data.

It may be full of biases, untested, and filled with bad and inaccurate information. Be aware and careful of information that comes from the untested experiences of one or a few persons.

Does the information make sense?

How can you learn to evaluate information and claims? I suggest that you start by taking a hard look at the information to determine if it makes sense. Is the theory sound? Is it plausible? Think it through carefully and always ask, "Does this sound too good to be true?" Chances are that if it sounds too good to be true, it probably is. I hope that you won't see this perspective as pessimistic, but I think we need to talk frankly about this issue. Many products, potions, vitamins, attitude adjustments, treatments, and so on imply results or make claims that really do not make sense. They offer solutions that are too simplistic and may be driven by profit or some other intent (bias) that has nothing to do with your well being.

There are many books on the market today, for example, that are written by cancer survivors. These books contain anecdotal information - their stories of how they handled their disease. These books contain their diets, their treatment regimes, their prescriptions for recovery. Many people write these books as a form of therapy - as their way of dealing with or finding meaning in their disease. It is fine to read these books and find comfort and reassurance in the testimony of someone who is surviving. Personal stories can provide hope, which we all need to nurture. But you should draw the line when it comes to heeding the recommendations. It is important to be able to sift through what is valuable for you and what is not. Be particularly wary of any claims for cures. If you read these testimonies, be sure you read the disclaimers and then ask yourself:

• Does this make sense?

• Why is this person writing this account?

• Did this person have an actual diagnosis of cancer as confirmed by a pathologist's report?

• What are this person's credentials?

• What claims does this individual make about his or her particular treatment?

• How long has the individual lived without a recurrence?

Keep in mind that cancer is not one disease but over 100. Each type of cancer behaves differently according to its stage upon diagnosis, its biology and the individual characteristics of the person who has the disease. No one can predict exactly how the disease will behave, and therein lies a great deal of hope for the individual. Reading anecdotal accounts can be inspiring. They can help you feel that you are not alone. They can offer new ways of coping and new insights into the changes that cancer is creating in your life. They can raise questions to discuss with your doctor. They can be powerful adjuncts to your care but they should rarely be adopted as treatment plans, especially in lieu of other treatments with better known outcomes. To rely on a plan that one person followed is not a healthy course of action.

After you have determined whether or not a particular piece of information makes sense, you then should assess its costs and benefits in terms of your physical, psychological, economic and social well being. When considering a possible cancer treatment, most people ask, "How might this treatment enhance or harm my physical well being?" Many people, however, don't assess the possible psychological, economic or social impact of a possible treatment. For example, I have seen patients who thought that they should be able to use visual imagery to make their cancer go away and then felt profoundly guilty when they couldn't make it happen. Some felt responsible when their positive attitudes were not strong enough to keep their cancer from recurring. These patients often feel that they have let people down and that they have failed. These negative psychological side effects are rarely raised or discussed in the information that is provided about treatments.

New Age treatments, special potions, and the personal stories about "how I cured my cancer with no drugs, surgery or radiation" usually involve some outlay of money. Many of the miracle cures offered by special clinics are very expensive and can severely drain not only your financial resources but also those of your family. I do not want to take away anyone's sense of hope but I do want to caution you to approach information gathering with an awareness of its long and short term impact on you and your family as you go about trying to make the best decisions about your care.

Processing information

The ways in which you process the information presented to you can be as important as the information itself. Two different people often draw very different conclusions from the same piece of information. Our particular biases and belief systems affect the ways in which we process or filter information. One of the filters that most patients have is their desire to get well. This filter, while life preserving, can also leave patients and family members vulnerable. It is natural to search for ways to have control over the cancer experience, which often feels really out of control. This need for information and control, however, can affect how you evaluate your options. Many people unfortunately are seeking to profit financially and otherwise from the fact that cancer is not easily or simply treated, and under the guise of "helping", offer treatments and cures that are not justified and probably don't work. It often is difficult for us to be aware of our vulnerabilities and to acknowledge that we might be exploited, but I encourage you to think about this. You will be better off in the long run if you don't buy the books or the potions or heed the advice of everyone who claims to have the answer. Learn to develop a critical eye and learn to trust it.

Transfer of information

Finally, I want to discuss how information is transferred from one person to another, and how this process makes it easy to get both good and bad information. Today we communicate almost instantly with one another by telephone, fax, wireless phones, e-mail and the Internet. It is estimated that 60 million Americans use the Internet to search for health information, comprising two thirds of those using the Internet according to a recent Harris poll. No one controls what appears on the Internet so it is a source of reliable, unreliable and a lot of "gray area" information. Anyone with a little computer knowledge, some hardware and a desire to "publish" can communicate whatever he or she wants to people across the world. The potential for providing helpful information is just as great as the potential for providing harmful information.

A recent article entitled, Can You Trust Internet Health Sites? noted that "There is no question that the quality of health information on the Internet is variable. It's uneven. Some of it's extremely good and some of it's extremely bad. Universities and patient advocacy groups put out material as a public service. Other sites promote questionable products and offer bad advice. The only way that the consumer is going to get reliable information is to find a Web site that has a person or institution or organization that they already have confidence in."

This lack of quality control is also found in the searching capacity of the Internet. Search engines can scan huge databases to find anything related to the key words being searched, producing long lists of sites without regard to the quality of information contained in the sites. Furthermore, many bookstores on the Internet have similar searching capacities. If you type in the words "breast cancer" in the search on Amazon.com or BarnesandNoble.com, for example, you will get a long list of every book published that has the words breast cancer in the title or as the key word. Are all these books of equal value and credibility? No. The quality-control problem is then compounded by the fact that readers may post their own subjective reviews, which is fine in the cases of fiction but tricky when it comes to books that contain advice about living with and/or treating cancer. It is important to note when these reviews are by lay people. The bookseller may give the author the opportunity to be interviewed, and these interviews may add a false credibility to the undiscerning eye.

Our Resource Center has disposed of books and other materials from our library that contained misinformation. In one book, the author, a layperson, claimed that mammograms spread the cancer cells by compressing the breast tissue. Another author recounted her formula for healing multiple metastatic cancers. Our staff continues to try to read everything that is on our shelves to insure that it contains quality information. We carry very few personal testimonies; generally we carry those that do not promote a specific treatment regime but offer inspiration and hope and possible ways of coping with the disease.

Please do not misunderstand me. The Internet, in my opinion, is a mixed bag - it can be a source of excellent and up-to-date information but it also can offer harmful information. Sifting through it makes the experience of having cancer more complicated. How, then can you begin to find the highest quality information with the least amount of difficulty? Here are a few suggestions:

• Information from any source should be based on reasonable data. Try to use a scientist's eye to evaluate the data.

• Learn how to evaluate the information from the standpoint of whether or not it makes sense. Is it plausible?

• Pay attention to whether or not the information comes from testimonials or a handful of people's perspectives.

• Analyze the costs and benefits of the information presented from several perspectives. How will the information affect your physical, psychological, economic, and social well being?

• Keep in mind how your own vulnerabilities or those of your loved ones may filter information or alter the interpretation and how it may affect your decision-making process.

• Avoid information that makes claims or assertions that you know in your heart are not realistic.

• Review the source of the information. Question who publishes or writes it and the motivations. Ask who stands to gain financially or otherwise from the promotion of this information.

• For web sites, find out who sponsors the web site. Web sites that end in .com are commercial and are profit oriented. Web sites that end in .edu come from educational institutions. Web sites that end in .org are from organizations. Web sites that contain "myhomepage" or "geocities" or other long addresses may be personal pages and may contain personal, anecdotal information.

• Does the source of information have a history of providing quality information? You are more likely to get good quality information from a web site that has a long history of being a resource. For example, cancer centers that have been designated by the National Cancer Institute as Comprehensive Cancer Centers have a history of being committed to science and cancer research. There are 36 such Centers located throughout the country including UCLA's Jonsson Comprehensive Cancer Center. Most have web sites that provide useful, quality information. The JCCC's website can be found at http://www.cancer.mednet.ucla.edu

• Non-profit organizations such as the American Cancer Society and the National Cancer Institute often provide information as a public service.

• Information that has been reviewed and written by a person with appropriate credentials, training and background is more likely to be reliable. Just because people have advanced degrees does not mean that they have studied the areas about which they are writing.

• The Resource Center library attempts to carry reliable resources and to eliminate those that we think are not factual or helpful, although even good books have outdated material in them.

• Be aware that many sources contain a mixture of both good and bad information, and that the good information can lend false credibility to the bad. Read everything with a discriminating eye and know that you can reject anything and everything you want.

• If you have questions about particular information, check it out. Talk to members of your health care team and to other patients. Have they heard of it? Do they know anything that can help you evaluate it more thoroughly?

• Look for corroborative information. Are there other sources on this topic that meet some of the requirements above that promote the same perspective?

These tips will help but not guarantee that the information you find will be right for you. It is important that you always feel that you have the right to reject information. You do not have to read or listen to everything that is given to you. Many well-meaning people want to help you on your cancer journey but aren't sure what to do. They may think they are helping by sharing stories about people with cancer whom they have known, or by giving you books or pages printed from the Internet. They are trying to show that they care about you. Take what they give you as just that but don't ever feel obliged to read, follow or believe what they want to share. You and your loved ones must decide what is right for you. The efforts of the well-meaning can be overwhelming. It is okay to say, "Thank you," and throw out whatever you do not want. It is okay to say, "Thank you, I appreciate that you care, but I have all the information I need."

Please know that the staff of the Ted Mann Family Resource Center is here to help. Our groups, classes and lecture series are places to find reliable information. Our staff is available to assist you with your job of "cancer survivor" and "sifter of information and seeker of truth."

Anne Coscarelli, Ph.D.

Wallis Annenberg Director’s Initiative in Psychosocial Oncology

© Anne Coscarelli, Ph.D. All rights reserved.

 

For reprint authorization, contact SimmsMannCenter@mednet.ucla.edu.