Sally's worldwide words of wisdom

11th February 2000 at 00:00
Sally Tweddle helped to establish an invaluable Internet site for cancer victims and their families. Jack Kenny remembers a brave woman who knew the value of knowledge for both groups

When you write day to day about information and communications technology (ICT) you can get so involved that you get to feel distanced from everyday life. So much so that you can be almost affronted when the real, rather than the virtual world intervenes. Cancer is the real world in all its savagery. It scares most people, but the late Sally Tweddle was an exception.

Four years ago, when her then husband, Jeremy, was diagnosed with cancer of the pancreas, Sally was a programme officer with the National Council for Educational Technology in Coventry. She turned to the Internet as a means of educating herself about the disease. "My work with the NCET was about communication and we could not find the kind of information that we needed to deal with the things that were happening to us," she told me last year. "I knew that we were not the only ones."

Jeremy died about a year later, and the event changed Sally's life profoundly. In the time since then, she and leading cancer specialist Dr Nicholas James created the CancerHelp UK website on the Internet to inform people about the disease and its implications. And in 1998 Sally, then a senior fellow with the Cancer Research Campaign, Institute for Cancer Studies at the University of Birmingham, received the TP Gunton Prize from the British Medical Association - one of its most prestigious awards.

The pound;8,000 prize is being used on joint research with the National Cancer Institute in the US to discover whether information offered on the Internet can help with earlier diagnosis or maybe the prevention of cancer. Much that Sally learned in her previous work with language and media was invaluable in the construction of CancerHelp UK.

"I have been able to put a great deal of academic research into practice," she told me. "Many of our findings will be useful to the learning grid. For instance, scanning in booklets is not good; the Internet is not a book. Good navigation is essential, an overview of the site is important, and people need to know the size ofa section that they are straying into.

"People have to be given a conceptual framework. The site has to be accessible to all abilities, not just the articulate middle class. Visuals are very important. There are 143 images to 540 pages of text. Text has to be broken up - language has to aim for clarity not effect, so small, self-contained blocks of text are important."

Some of Sally's most interesting insights arose from her work analysing the way that the site is used. When you depend on academic funding for your work you need to understand how the site is being used. Sally argued that merely counting the number of "hits" is not helpful. "We need to know how people move from one place to another. We have codified the use under categories. The surfers just drift in and look at one or two pages. The seekers will look at just a few pages. The readers and mappers will look at between 5 and 20 pages. The researchers will go from 20 to 99 pages. The hunter gatherers, and these are mostly machines, will peruse over 100 pages. We have even gathered data that suggests that UK use is very different from the use that is made by people in the US."

Did she worry that someone surfing late at night might discover something that would terrify them? "Only one person has said directly to us, 'I didn't want to know that.' Most people value the anonymity, the distance, the ability to formulate questions without feeling inadequate or embarrassed.

"Our pages are designed so that users have to make active decisions to keep reading. We have nothing on the site about survival rates. Some people have asked for it to be included. Though the jury is out on whether that is what most people want."

Last year Sally left her fellowship to take up a new appointment in the faculty of education to carry on her research into the Web as an education medium. In August she discovered that she had cancer of the duodenum. Thanks to her work at Birmingham she was able to face the problems with the kind of knowledge which was not easily available four years ago. She died on December 14, 1999. There are many who will miss her insights and her courage.

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