Way Too Much Info

ONCNG Oncology Nursing, October 2008, Volume 2, Issue 3

The Internet can be an amazingly useful educational resource for patients who have been diagnosed with cancer. It can also be the source of potentially dangerous misinformation.

The Internet can be an amazingly useful educational resource for patients who have been diagnosed with cancer. It can also be the source of potentially dangerous misinformation. Luckily, that’s often the exception to the rule, as demonstrated by reliable and useful sites like Cancer.Net that provide convenient access to essential information that supplements the guidance patients receive from their physicians.

According to a report from the Pew Internet and American Life Project, 80% of American Internet users have searched for information for at least one of 17 health topics. In addition, 53% said that the information they found from the most recent search affected how they took care of themselves or cared for someone else, and 54% reported that the information led them to ask a doctor new questions or receive a second opinion from another doctor.

Judging by these numbers, it is likely that your patients are going online to fi nd information about cancer. What are some advantages of patients accessing cancer information online? First, this allows patients and their family and friends to learn more about the disease at their own pace and review this information thoroughly. Often, patients report difficulty comprehending all of the information they receive from their doctor, especially after a new diagnosis. In addition to teaching about the basics of cancer, a good website can help patients learn about diagnostic tests they will need and help them evaluate treatment options. Patients can also go online to find support and connect with others who have a similar diagnosis. Finally, the Internet provides

the growing population of cancer survivors with up-to-date information about post-treatment concerns and follow-up care.

However, the Internet is not without its drawbacks and dangers. Not all websites have timely, accurate, and relevant information. Some sites promote expensive and unproven or unsafe treatments to vulnerable people at the expense of curative therapy. Because of the wide disparity in the quality of online information, many healthcare professionals remain wary of

medical information on the Internet.

Cancer.Net: The voice of the cancer physician

To address the need for accurate, understandable, patient-centered, online cancer information, Cancer.Net brings the expertise and resources of the American Society of Clinical Oncology (ASCO), the voice of the world’s cancer physicians, to people living with cancer and those who care for and care about them. Cancer.Net provides timely, oncologist-approved information to

help patients and families make informed healthcare decisions. All information on Cancer.Net is developed through a peer-review process by the Cancer.Net editorial board, which comprises more than 150 medical, surgical, radiation, and pediatric oncologists; oncology nurses; social workers; and patient advocates. The content is reviewed annually

or as needed for both accuracy and readability.

Although the primary audience is people with cancer and their families and friends, ASCO members, nurses, other healthcare providers, and patient advocates play a key role in sharing this resource with patients.

Key content on Cancer.Net: Guides to Cancer

Cancer.Net offers Guides to Cancer for more than 120 types of cancer and cancer-related syndromes. These guides provide comprehensive disease information, covering statistics, risk factors, prevention strategies, symptoms, tests used to make a diagnosis, an explanation of cancer staging and how it affects treatment and prognosis, clinical trials, treatment options,

follow-up care, questions to ask the doctor, and current research for each type of cancer. In addition, Guides to Cancer for 25 of the most common cancers affecting Hispanics and Latinos in the United States are now available in Spanish.

ASCO Cancer Education SlidesThe “ASCO Cancer Education Slides” provide reliable, oncologist-approved cancer information in a turn-key Microsoft PowerPoint presentation. Based on the Guides to Cancer, the slides are intended for oncologists, oncology nurses, and other healthcare professionals who give patient and community group lectures. More than 20 titles are available here.

ASCO Patient Guides

Based on the ASCO Clinical Practice Guidelines for physicians, patient guides are available in both text and .PDF versions here. They cover treatment options and tests for specific forms of cancer and include background information, summaries of the recommendations of the ASCO expert panels that designed the treatment guidelines and what they mean for patients, questions to ask the doctor, and additional resources for further research. Several of the patient guides have been translated into Spanish.

Podcasts

More than 35 podcasts on cancer-related topics are available for patients here. Many podcasts involve interviews with ASCO members about timely topics in cancer, including PET scans, targeted cancer treatments, and advances in cancer screening.

Expert Perspective on Cancer News

The Expert Perspective on Cancer News series provides commentary from ASCO experts on prominent news stories and can be found in the “News and Events section on Cancer.Net.”

ASCO Expert Corner

People can learn what ASCO experts are saying about a variety of cancer topics at the “ASCO Expert Corner.” These short interviews address a specifi =c area of cancer care or research. Topics include young adults with cancer, the role of a tumor board in cancer treatment, and the attributes of quality clinical trial sites.

Find an Oncologist

Patients can fi nd an oncologist near their home or search by practice specialty by accessing a database of ASCO members who have made their contact information public here.

Additional content

Other popular content on Cancer.Net includes information on managing side effects; cancer survivorship; cancer prevention; a library of medical and staging illustrations; weekly feature articles that offer practical, timely information on a variety of cancer topics; links to additional patient information resources; and an extensive section on coping with cancer, designed for both patients and caregivers.

Finding credible online health informationWith more patients using the Internet to find cancer information, how do you steer them to the best resources? The first discussion you have with your patients may need to address the idea that there is bad information on the Internet. In the 2006 Pew report, 75% of health seekers did not regularly check the source and date of the health information they found online.

There is a tendency for people to assume that all information on the Internet is true, instead of being critical about the information. Because Internet content is not regulated, patients need to become knowledgeable consumers of online health information. Taking a proactive approach to review information with your patients may prevent them from feeling as if they can’t discuss what they have found on the Internet with you. Share the following tips with your patients:

  • Find out who manages the website. The person or organization that operates the website should be identified throughout the website so users know the source and purpose of the information (such as education or selling a product). Use the “About Us” section to learn more about who operates the site.
  • Learn who is responsible for the content and how often it is updated. Reliable websites tell you who edits and approves the content (such as an editorial board) and how to contact the organization that operates the website. Look for a date at the beginning or end of an article, so you know when the article was last posted or reviewed. Be cautious when reading information posted on discussion groups, bulletin boards, and blogs because these sections may not be regularly reviewed or updated.
  • Learn the source of the information on the website. Trustworthy cancer information is based on scientific evidence and not personal feelings or experiences. When learning about treatment options, look for links or references to research studies. If some material is based on an opinion, it should be clearly labeled. Be cautious about scientific-sounding material that has no data to support the information.
  • Find out who funds the website, because this may aff ect how information is presented. High-quality websites make it easy to tell the difference between advertisements and medical information. Patients should avoid websites that promote a specific medication or treatment over another.
  • Learn how the website maintains privacy. If the website requires you to give confidential information—such as your name, address, e-mail address, or diagnosis—there should be a separate security or privacy policy statement telling you how this information will be used.
  • Check that the website has a linking policy. Links take the user to another website. Be aware that the new website may not have the same standards as the one you left. Some sites have a policy of only linking to websites that meet specific criteria, whereas other sites may include links to any website.
  • Avoid websites that make claims that seem too good to be true.
  • Do not start new medications, stop taking current medications, or otherwise change any health behaviors based on information found online without consulting your doctor.

Helping patients understand research findings

Of course, much cancer information on the Internet is not easily interpreted, especially by patients. With the explosion of online

healthcare information, patients can easily find journal studies, abstracts, posters, and other forms of scientific communication. You can play an important role by putting the cancer information into context for your patient. It is helpful to review whether a study pertains to the patient’s specific type and subtype of cancer; how the study may or may not mimic actual clinical practice; any limitations of the study, such as study length, sample size, and health of the participants; and the availability of the treatment mentioned in the study (often, investigational drugs are only available through a clinical trial, and some patients may not realize this).

On Cancer.Net, summaries of key information from ASCO meetings and symposia are summarized in the Cancer Advances publication, a series of consumer information resources found here. Included in each study is a section titled “What Th is Means for Patients” that places the study information into the appropriate context for patients. The same feature is also found in the ASCO Patient Guides, which are easy-to-read-summaries for patients based on the ASCO Clinical Practice Guidelines.

By recommending credible online health resources such as Cancer.Net, it is possible to help your patients and their friends and family learn more about cancer. High-quality information can help them make the best possible decisions, which ultimately strengthens the relationship between you and your patients.

Diane Blum, MSW, is Editor in Chief of Cancer.Net and Executive Director of CancerCare.