Home Schooled: The Internet and the Oncology Nurse's Role in Patient Education

The Internet’s influence on the oncology nurse’s role as patient educator is continually changing, with more and more patients using the Internet to search for health-related information. A recent Harris Interactive poll found that the percentage of people who have performed online searches for health or medical information increased from 53% in 2005 to 71% in 2007. Referred to by Harris Interactive as “cyberchondriacs,” there are now more than 160 million of them in the US. A Pew Internet survey reported that half of all adults with a chronic condition use the Internet to research their conditions. A significant number of these individuals (86%) are looking for specifi c disease or treatment information.

Patients’ growing use of the Internet as an educational medium does not relieve nurses of their patient education responsibilities. Instead, these numbers tell us that consumers need nurse educators to be involved in developing the information available on the Internet as well as evaluating what is currently online. Are we prepared to advise and support those choosing online self-education?

But nurse, I read it on the Internet!

As more and more information is available on the Web, how do patients faced with the challenge of learning about cancer identify credible information? A Google search using the words “breast cancer” turns up more than 40,000,000 hits! Are the top hits listed providing the best information? How do patients decide where and what to read about their cancer? Although the Internet can be a useful tool to help patients learn about their cancer and treatments, it can also overwhelm patients who look in the wrong places or at information that is not relevant to their unique situation.

Traditionally, information about an individual’s health (eg, test results, treatment choices, recommendations, etc) came from their healthcare professional. Now, consumers have more choices and can bypass the professional to find this information on their own via the Internet. They also increasingly have access to their own electronic health records. Most healthcare providers believe enhanced information access for patients is a good thing, but consumer health literacy is an issue of concern. Will patients misinterpret information? Can patients identify poor quality information? Studies affirm the value of the Internet for patients seeking health information, but they also raise concerns about the accuracy of the information found at some health education websites. Informing patients about website quality issues and educating them to evaluate information for reliability is an ongoing challenge, due to the nature of the Internet, constantly changing science, and lack of consistent standards applied to website development. There is an opportunity for oncology nurses to offer patients advice to help them as they search for information. Informed patients can advocate more easily for themselves and participate fully in decision making. A vital part of this participation is access to good, quality information.

Assessing quality

Efforts have been made over the last 10 years to address concerns regarding the quality of health information on the Internet. Some countries have sponsored government initiatives; in others, the initiatives come through professional societies or other grassroots organizations, including the American Health Information Management Association. Some initiatives, including eff orts by the World Health Organization (WHO), span international boundaries. Created in 1995, the Health on the Net Foundation (HON) is the most recognized model. This international, not-for-profi t, non-government organization’s mission is to guide Internet users “by highlighting reliable, understandable, relevant and trustworthy sources of online health and medical information.”

HON established a code of conduct and a set of principles to help Internet users achieve this goal and overcome the barriers related to the overwhelming quantity and uneven quality of health information online. The HONcode set of rules (Table I) defines basic ethical standards regarding information presented. Websites can formally submit an application for HON certification, which commits them to strictly observing all HONcode principles. Verification of adherence to the HONcode is assessed by the HON team. Certification allows the website to display the HONcode badge. HON has teamed up with Google to make available a HONcode toolbar. Once downloaded, it connects in real-time to the HON server to verify accreditation status of health websites visited.

Other resources for quality checking include DISCERN, a tool designed to help consumers judge the quality of written information about treatment choices online or via other written mediums. This tool (summarized in Table II) covers bias in the material, a clear statement of aims, references and additional sources of support and information, uncertainty, risks and benefi ts (including those of opting for no treatment), and treatment options. Concepts such as shared decision making and quality of life are also incorporated. Although it is unlikely that most patients and providers would take the time to respond to all these questions when surfi ng the Web for information, the concepts DISCERN lays out are important for both groups to understand as they study treatment options—especially important in oncology, as treatment choices often have a major impact on quality of life.

So, how can oncology nurses help patients fi nd quality cancer-specifi c information online? First, it’s important to help patients clarify what they are looking for and advise them on how to focus their search. Are they in the midst of a staging workup, treatment option decisions, or treatmentrelated symptom management? Writing down keywords and the correct spellings of treatments and medical terminology can be a big help. Is an Internet search the place to fi nd the answers to their questions? It is imperative for the oncology nurse to assess what the patient is seeking and understand their cancer, treatment options, hope, connection with other patients and validation of prognosis. Patients are individuals, all with their own unique set of circumstances, learning habits, and abilities. The choice to use the Internet for education purposes deserves a nurse’s advice and support.

Advice and tools provided to patients need to be simple. A brief questionnaire or checklist to assist patients in assessing website quality follows, including principles from the HONcode, as well as other concepts specific to the oncology population.

Can I easily find:

• The purpose or mission of this site? Does it clearly tell me that I can fi nd what I’m looking for on the first page?
• An authors list with credentials? Are they experts on the topic?
• Date of the last modifi cation of pages?
• Endorsement by nonprofi t professional organization, HONcode accreditation, or other trusted source?
• Policy on confidentiality of data?
• Source of data and references?
• Funding and advertising policy? Is this a pharmaceutical website with limited and focused treatment information?
• A glossary that explains cancer terms?

Presentation and design are important aspects to consider when evaluating a website; if users cannot easily fi nd the information they are looking for, they won’t stay long to fi nd out if the information is of good quality. The reverse is also true; readability and easy navigation don’t necessarily correlate with informative and accurate information. Remind patients that although pharmaceutical sites will have very detailed information on specifi c treatments, they often include no references to other possible choices. There are several practical approaches oncology nurses can utilize within busy clinical settings to help patients who seek information via the Internet. A few suggestions include:

• Create handouts with recommended cancer websites.
• Create a cancer website favorites folder on public computers or links on your computer desktop.
• Link to recommended sites within your practice or hospital website.
• Seek recommendations from trusted professional organizations.
• Develop a patient education class on how to effectively search the Internet for cancer and health information.
• Review cancer type-specific websites appropriate for your patient population, and become familiar with their resources.

Informed patients have the opportunity to make their interactions with their physicians and other healthcare team members more meaningful and effective. An oncology nurse’s ability to assess patients’ needs and direct them to appropriate resources online or offl ine is invaluable. The Internet will not replace oncology nurses as a primary source of information, but the nurse and patient alike can use this tool to access information that was previously unavailable or available only with great eff ort. Th e human interaction that is so important in helping patients through their cancer journey may be even more necessary in our technologicallyfocused society.

Judy Petersen is currently the Director of Clinical Development at Nexcura, an online health education company that develops interactive decision support tools for patients with cancer, heart, and lung diseases (www.nexcura.com). Prior to this, she was in clinical practice as an Oncology Clinical Nurse Specialist.