Twenty years ago, the Internet created a whole new world of electronic information-sharing. Since then, the public has increasingly turned to the Internet's websites and search engines to access the latest information that the World Wide Web offers. In North America alone, for example, 331.4 million people currently use the Internet - a 109 per cent increase over the year 2000. ¹

The Internet is not only used for finding the latest information. It also serves as an information resource for countless topics- including disease.

But what if information on disease is not understood by the end-user?

In 2005, there were an estimated 149,000 new cases of cancer and 69,500 deaths related to cancer in Canada. One way for people to protect themselves against some of the most common and dangerous forms of this disease - breast, prostate or colorectal cancer - is to try and understand them. The Internet offers answers, but sometimes the information can be too complicated to understand.

One of the biggest obstacles to understanding involves an individual's literacy level resulting in their overall inability to read and understand the information they find on the Internet.

Dr. José Arocha, Assistant Professor in the Department of Health Studies and Gerontology at the University of Waterloo, and his colleague, Dr. Laurie Hoffman-Goetz, a Professor in the same department, are investigating these problems by evaluating the 'readability' and 'comprehensibility' of breast, prostate and colorectal cancer information on 100 popular Internet cancer websites, as ranked by the 10 most popular search engines on the Internet.

With the help of the Kitchener Public Library, as well as partners within the Cancer Prevention and Early Detection Network - Waterloo Region, Drs. Arocha and Hoffman-Goetz successfully recruited 44 participants, between the ages of 50 and 85, for their study.

The participants were cancer-free, and were chosen because of their general interest in using the Internet to learn more about cancer. A 1995 International Adult Literacy survey, conducted by Statistics Canada, also suggested that this age group was at the lowest level of literacy in Canada.

Drs. Arocha and Hoffman-Goetz found that, while educational, popular websites devoted to issuing cancer prevention information do not work with the reading level of audiences. Those websites investigated include non-governmental, governmental and commercial organizations.

So far, Drs. Arocha and Hoffman-Goetz have determined that most of these sites are designed for people who can read at a Grade 12 level or higher. Given that half of Canadians read at about a Grade 5 level, this is a serious problem - especially in terms of comprehensibility.

"More and more individuals now rely on the Internet to provide advice, information and reassurance regarding cancer," says Dr. Phil Branton, Scientific Director of the Canadian Institutes of Health Research Institute of Cancer Research. "In this context the work of Drs. Arocha and Hoffman-Goetz is groundbreaking as it shows that much more attention should be given to individuals with basic reading skills to allow them to manage and cope with cancer."

A lot of prostate, breast and colorectal cancer information may be publicly available on websites, but Drs. Arocha and Hoffman-Goetz say that any knowledge barrier between the communicator and the reader isn't intentional. The key to resolving this barrier is for the communicator to take the time to make the material more accessible.

"Don't just let experts write the information and then put it out. Health information not only has to be accurate, but easy to understand," says Dr. Arocha.

Some quick fixes suggested for this problem include: testing the readability of the text, using pictures and cartoons to highlight or reinforce what's written, and making an effort to express the information in plain language.

Some cancer organizations, such as the Canadian Cancer Society (CCS), have taken steps to make their information more accessible. CCS tested people's abilities to understand their website and discovered that some of the site's language was at a Grade 6-8 level, or higher. CCS is now making an effort to bring language down to a Grade 6 level whenever possible.

"A great number of individuals who investigate our site are in search of information that can be useful to them," says Ms. Sylvia Leonard, Vice-President of Cancer Control Policy and Programs, at the Ontario Division of the CCS. "They can be patients, health care providers, journalists, doctors or researchers. It is important that the information on our site be comprehensible."

"This study will provide valuable information for communicators," says Dr. Roy Cameron, Professor and fellow colleague of Drs. Arocha and Hoffman-Goetz at the University of Waterloo. "Understandable information on the Internet can reduce demands on health care professionals for such information." 

Some people don't know how to turn on a computer - let alone use the Internet to get information about cancer. Another barrier for study participants has proven to be technological literacy issues.

In terms of the future, Drs. Arocha and Hoffman-Goetz are interested in investigating technological literacy further. They are also interested in studying how people with low health literacy understand health information on the Internet.

But the ultimate goal of their research remains constant: communication of information related to cancer, or any other disease, must respect the public's ability to read and comprehend this information.

Steps must be taken to simplify complex information on popular websites, which will, in turn, lead to a greater level of understanding for the Canadian public.

"Individuals need clear and useable health information in order to make informed decisions about their health actions," says Dr. Hoffman-Goetz.

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Next Month in the May Research Profile - Worms. They're slippery, they're slimy - and they look a lot like your spinal cord? So says one CIHR-funded researcher who studies the central nervous system of tiny worms called nematodes.  His findings will help researchers understand  the development and regeneration of the human central nervous system. To learn more about this award-winning researcher, check out next month's research profile.

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^1.  http://www.internetworldstats.com/stats.htm