Survey of oncology patients and internet use – the doctor patient relationship

Two surveys conducted in 1999 and 2001 surveyed oncology patients from two teaching hospitals in central Sydney to explore the experience and impact of Internet use among Australian oncology patients.

In November 1999, the first survey consisted of a questionnaire which was mailed to 240 eligible patients selected from 617 sequential registrations to the oncology units. The eligible participants in the study were patients who were alive, competent, had cancer, were of known address and whose attending medical officer was participating.

In the second survey, to obtain a more representative sample, researchers invited all oncology patients visiting the outpatient clinics over a three-month period (September to December 2001) to participate.

Completed questionnaires were collected from 142 patients (response rate, 59%) in 1999 and from 153 patients (number of refusals unknown) in 2001. Of these, 33% in 1999 and 46% in 2001 had accessed the Internet for information relating to their illness, either personally or through family and friends. In both surveys, most users accessed the Internet from home, the information sought was mainly in relation to treatment, and the most-visited Internet sites were those of cancer centres.

Most patients viewed the impact of the Internet as positive.

Researchers found the advantages included its speed, convenience, privacy, currency, diversity of viewpoints, and usefulness as a support tool. Many reported that they had sought corroboration of Internet information with information from other sources, especially their doctor.

The problems, however, included the Internet’s impersonal nature, time costs, overabundance of information, and concerns about the discovery of inappropriate, inaccurate or distressing information. Most respondents emphasised that they were able to recognise these limitations, but considered the Internet a valuable resource. One respondent wrote, ‘I felt my capacity to cope with the illness and treatment greatly improved because I learned enough from the Internet to challenge my oncologist and thereby learn to trust him and his advice’.

These oncology patients assessed impacts as either positive or neutral in overall influence. Researchers state that, ‘increasing Internet use by patients and their families should not be viewed as a problem, but as an opportunity for patients and their treatment teams to work together, ensuring that patients have up-to-date information about their illness and its treatment and are aware that they are not alone in the fight against cancer’.

This report was compiled by Dr Julia Brotherton of Repatriation General Hospital, Concord, NSW; Dr Stephen J Clarke of the Sydney Cancer Centre, Royal Prince Alfred Hospital, Camperdown, NSW; and Dr Susan Quine of the School of Public Health, University of Sydney, NSW.