What do patients with prostate or breast cancer want from an Internet site? A qualitative study of information needs

Abstract

The study aimed to explore the information needs of cancer patients, to solicit their views of Internet-based health information and to consider whether the DIPEx website would have addressed specific unmet information needs of people with breast or prostate cancer. Focus groups were conducted first to identify information needs. Participants were recruited through four breast and prostate cancer support groups in the UK. Individual interviews, in which participants were shown DIPEx and asked to search for material related to concerns that had been important to them as cancer patients, were conducted after the focus groups.

Respondents said their information needs had been complex and changed over time while the information they had been given was often patchy, inconsistent, contradictory and haphazard. Access to practical and experiential information from other patients was highly valued. Those with experience of using the Internet expressed a clear preference for non-commercial sites for health information. Sites attached to recognised centres of excellence such as universities or well-known medical centres were also preferred. Respondents were aware of the possible pitfalls of taking health information from the Internet and often compared information from several sources before believing it.

Introduction

The Internet is becoming an increasingly important source of health information but relatively little is known about how people use it for this purpose and how it compares, in their experience, with other kinds of health information provision. In the UK, policy documents such as the NHS Cancer Plan¹ have highlighted the necessity of addressing patients’ information needs. The provision of more information through telephone help-lines such as NHS Direct and Internet resources accessible through personal computers and digital TV has been recommended.

The potential to access vast amounts of health information on the Internet has not met with universal approval. Concerns include the quality of the information provided [1], [2] although recent studies have indicated that people may be more discriminating and better at finding the ‘right answers’ to health queries than has been feared. Eysenbach, for instance used Internet laboratory testing and focus groups and concluded that even though people may not use optimum search strategies they can find the answers they need [3].

Another concern is that a growing digital divide threatens to exclude those unfamiliar with, or lacking easy access to, computers and the Internet leading to an ‘inverse information law’ [4]. However, others hope that access to the Internet will encourage greater equity in health care information. To date very little empirical work has been done with people who have a serious disease to discover how the Internet might meet their information needs.

Optimistic commentators also believe that wider access to medical information will encourage a balanced encounter between patient and health professional [5] and increase awareness of evidence based medicine [6]. This is expected to lead to better-informed decisions by consumers, better treatment decisions, a stronger provider–client relationship, increased concordance about the benefits of treatment and greater satisfaction all round [7].