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Rapid growth in the provision and usage of cancer related information available on the Internet in the UK. Implications for cancer patients, clinicians, and researchers.
Cotterill S.J.
Proc. World Congress of the Internet in Medicine, 1997
Summary:
In recent years there has been rapid growth in the amount of cancer related information produced in the UK that is available on the Internet, particularly that on the World Wide Web. The UK web sites offering cancer
related information are identified, a number of different search strategies were employed to ensure that attainment was as complete as possible. Seventy-three sites are identified, 52 are sites specifically offering
cancer information, 21 are medical or general sites offering some cancer related information. Details of these sites are provided. Prior to 1995 the number of UK sites offering cancer information was minimal, since
then there has been rapid growth in the number of sites, and also in the volume of information in individual sites. UK usage of cancer information (both domestic and foreign) has also grown, though this is harder to
quantify. Potential implications of the increasing growth in provision and usage of cancer related information are discussed in relation to UK and international considerations. In particular possible changes in
patient culture, new information demands on oncologists, and issues of standards of information on the Internet are discussed.
INTRODUCTION
One in 3 people will develop cancer sometime during their lifetime, it is the second most common cause of death in the UK. It is the purpose of this paper to document growth in the UK of both provision and usage
cancer related information on the Internet, and also to investigate the potential implications of this for both patients, clinicians, and researchers.
METHODS
The UK web sites offering cancer related information were identified. A number of different search strategies were employed to ensure that attainment was as complete as possible. Various search engines were utilised
including Alta Vista, Lycos, and Yahoo, also medical index sites were investigated, and links in identified UK cancer sites were examined. Data on UK Internet usage was also obtained.
RESULTS
Seventy three sites are identified, 52 are sites specifically offering cancer information, 21 are medical or general sites offering pages containing cancer related information. For the 52 cancer specific sites
organisations were classified according to their primary role; 19 research / treatment centres, 14 charities, 4 patient produced, 3 professional organisations, 3 governmental, 2 cancer information services, 2
journals, 2 commercial companies providing alternative treatments for cancer, 1 cancer registry, 1 pharmaceutical company, and 1 produced for a television documentary. Details of these sites are shown in Appendix 1,
and are also included in the author's web pages [2]. Prior to 1995 the number of UK sites offering cancer information was minimal, since then there has been rapid growth in the number of sites, and also in the
volume of information in individual sites.
The usage of cancer related information on the Internet by UK residents cannot be readily quantified. However, general UK usage of the Internet is growing at an exponential rate; a recent NOP poll estimated that
there are over 4.5 million people using the Internet in the UK. Home users number over a million, having more than doubled compared to a year earlier [1]. Surveys of Internet users typically show a bias towards
males, and younger adults, though usage is expected to become more representative over time. Approximately half of all cancer patients are age 65 or over at diagnosis, however there are still a large number of
younger patients who are in the age-groups which are more likely to have access to the Internet. Moreover, siblings of older cancer patients are likely to fall into the peak age range for Internet access. Internet
usage by oncologists and other related health professionals is likely to have been limited because of NHS restrictions introduced because of security and confidentiality concerns. However, a sub-set of health
professionals and researchers linked to university medical schools will have ready access to Internet facilities.
DISCUSSION
This paper demonstrates the rapid growth in the number of UK based providers of cancer information on the Internet, particularly on the Word Wide Web. There has also been growth in the amount of information within
specific sites. This growth is likely to continue; organisations will develop web sites to provide a public point of contact, and also promote themselves. Many of the existing UK sites are those linked to university
medical schools. As use of the Internet becomes more widespread there is likely to be a higher proportion of sites created by other organisations, and more sites produced by patients. As with the Internet in general
there is likely to be an increase in the number of commercial sites, for example sites funded by advertising that offer services for physicians.
The Internet offers a range of facilities including the World Wide Web, E-mail, discussion lists, news groups, interactive chat lines, file transfer facilities, and access to remote databases. These resources are
potentially of great benefit to physicians, researchers, patients, and the wider public. They provide resources for medical education, reference information and a dynamic forum for physicians and researchers to
collaborate, and keep up to date with new developments. For patients, their relatives and friends the Net provides a way of supplementing their information about their cancer and its treatment. The Net may also be
used to promote awareness about cancer and provide health education to the wider public.
As public use of the Internet continues to grow this will create new challenges for oncologists in the UK. Physicians have largely been the sole providers of information to their patients and their relatives. However
oncologists are increasingly likely to encounter patients who obtain information via the Internet, requiring physicians to adopt a role as information councillor [3]. In the UK this may be problematic; whist an
increasing number of patients have access to the Internet many of their doctors will not. Patient culture may also be affected by the Internet, for example "protocol shopping" may become more commonplace.
Since the bulk of cancer information on the Net is located in sites in North America it is likely that UK patient culture may absorb some American cultural characteristics. For example, patients generally take a
more active role in treatment decisions and demand more second opinions.
There are concerns about the quality of medical information on the Internet. There are a number of initiatives aiming to promote medical standards on the Net, however, it remains a largely unregulated entity and
standards may well be unenforceable. Anyone can publish information about cancer on the Internet regardless of medical qualifications. There are numerous Web sites giving details about alternative treatments for
cancer often containing unverified health claims. Also, some E-mail discussion groups frequently have postings about alternative treatments for cancer.
CONCLUSIONS
In the UK there has been rapid growth in the provision and usage of cancer related information on the Internet. This growth is likely to continue at an exponential rate, and will have important implications for
patients, clinicians, and researchers.
References
[1] NOP Research Group. March 1997. (http://www.nopres.co.uk/int130397.htm)
[2] Guide to InterNet Resources for Cancer (http://www.ncl.ac.uk/~nchwww/guides/clinks1.htm)
[3] Glode LM. Challenges and Opportunities of the Internet for Medical Oncology. J Clin Onc 14;2181-2186.
This was the abstract accepted for the World Congress of the Internet in Medicine, 1997 (poster presentation).
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