It's good to talk: comparison of a telephone helpline and website for cancer information

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Abstract

The Internet plays an important role in the information gathering process for people affected by cancer. This paper presents the results of a study comparing two sources of cancer information; a website and a telephone helpline. Data were captured on the use of one section of the UK charity CancerBACUP's website, and systematically compared to data collected from every fifth user of the charity's helpline. Subjects of enquiry for 994 telephone enquiries and 3096 web enquiries were comparable. The majority of enquiries to both services were about women and/or patients aged 50 or older. Website users were more likely than helpline users to request factual information and less likely to request information on sensitive topics. This study provides valuable information about the types of health information people seek from different sources and how the sources may complement each other.

Introduction

Published research on use of the Internet for cancer information falls into two broad categories: studies focussing specifically on the Internet and studies including the Internet as one of a range of information sources. Among the latter, Mills and Davidson [1] investigated information sources used by 430 UK cancer patients and found that the most frequently used were consultants, general practitioners, chemotherapy/radiotherapy staff, ward staff, and family and friends. Less than 10% of respondents used the Internet for cancer information. Also in the UK, Leydon and McPherson [2] found that the most frequent sources of post-diagnosis information were health professionals, books, and family and friends. Patients aged under 60 and/or who had remained in full-time education post-16 were most likely to use visual sources, including the Internet.

Among research looking specifically at Internet usage, Pereira et al. [3] found that 34/79 (43%) of US cancer patients used the Internet to look for cancer-related information, the majority to find more information on their cancer and its treatment, to research treatment options, and to obtain information on ‘alternative’ treatments. Paulter et al. [4] found that 91/312 (29%) of US prostate cancer patients had used the Internet to obtain information about the disease, mostly related to treatment.

This research suggests that although the Internet is not cancer patients’ main source of cancer information, it plays an important role in their information gathering process. However, people remain one of the most frequently consulted and highly valued sources of cancer information [1], [5], and the NHS Cancer Information Strategy [6] emphasises the importance of patients and carers having the opportunity to talk things through both with fellow patients and with health professionals. The NHS is also focussing on patient involvement in decisions about their care and informed consent, and emphasises that patients need good quality information and opportunities for discussion if they are to become equal partners in their own care [7], [8].

For these reasons, we were interested in whether CancerBACUP's users sought different types of information via the charity's telephone helpline than they did on its website, both of which can be seen as ‘mediated’ encounters between health care providers and consumers [9]. Indeed, since use of the Internet continues to increase [10], the implications for providers of health information need a more thorough examination. CancerBACUP maintains an extensive website (www.cancerbacup.org.uk), produces 65 booklets and 200 factsheets for people affected by cancer, provides information via a free telephone helpline, and has local drop-in centres staffed by experienced oncology nurses. Telephone interpreting facilities are available via both the helpline and drop-in centres.

CancerBACUP's patient representatives have informed us that for cancer patients some issues are more sensitive than others, and are first explored by making an impersonal enquiry. We hypothesised that people would use the Internet more than the helpline to explore these issues privately and impersonally. More specifically, we hypothesied that requests to CancerBACUP's website are more likely to be for ‘sensitive’ information than are those to the helpline. We defined ‘sensitive’ topics as: relationships/sexuality; depression; counselling; dying/bereavement; and legal/financial concerns.

Section snippets

CancerBACUP website

One section of CancerBACUP's website, ‘the Personalised Online Cancer Information Service’ (POCIS) dealt with requests for information tailored to the enquirer. We used this as a proxy for a discrete enquiry. POCIS consisted of a series of pages (Box 1) asking enquirers to indicate the gender, age, and cancer site(s) of the patient, and to select from three ‘general’ information themes—type of cancer, cancer treatments, and living with cancer. Users then refined their enquiry on subsequent

The sample

The one in five sample of helpline enquiries produced 1494 records in the study period (Table 1). After excluding enquiries that were exclusively about subjects which could not be mapped to POCIS topics (n = 500), the analysis was based on 994 telephone enquiries. Comparing the demographic profiles of included and excluded enquirers to investigate any potential bias, showed no statistically significant differences in terms of gender and age (male 21% versus 24%, χ2 = 1.6, 1 d.f., P = 0.21; under

Discussion

Our hypothesis was that people use the Internet to find information on issues that might be difficult to talk about yet, in this case-study of CancerBACUP's services, we found that the charity's telephone helpline received more enquiries about sensitive issues than did one section of its website. Data from POCIS showed that, of the three general information topics, enquiries were most likely to pertain to types of cancer and least likely to be about living with cancer. Helpline enquiries were

Acknowledgements

We wish to thank the callers to the CancerBACUP helpline who answered the research questions, the CancerBACUP Information Service nurses who collected the data, those who helped with the data checking and entry during the study period, and Michiel Dethmers who designed the system for collecting usage statistics from the website. We also thank all members of CancerBACUP's staff and the CancerBACUP Research Steering Committee for their continuing support and insights. This study was funded by a

References (11)

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