||The Cyberspace Odyssey - A Hitchhikers
Guide to the Net?
Bruce Madge, A.L.A., DHMSA.
Link to webpage
The future of health care is changing and predictions from America suggest that the informed patient will be the primary care physician of the future. No longer will the patient consult the doctor first but will initially go to the Internet for information on their condition. The Internet has caused this major change of emphasis and so an overview of developments on the World Wide Web is necessary to help inform the health information professionals of their role in this brave new world.
The incredible growth of the Internet, which allows the delivery of information to the end-user either as web information or through electronic journals and document delivery, is not without its problems. These include the chaos of the web, the inadequacy of the search engines and the questionable quality of the information. Added to this is the growing use of the terms digital or virtual libraries which will increasingly effect the way that we operate and the way we are perceived by the public. The growth of Knowledge Management in the commercial world has also put the role and skills of the information professional under the spotlight but we have been slow to respond so far.
So what resources and what skills do we need to cope with this new world? Quality of health information is currently a big topic and various groups are trying to deal with this and come to a usable solution. Electronic journals are causing concern to our profession - do we go print or do we go electronic or do we opt for the "hybrid" approach? Added to this is the question of e-prints with projects such as PubMed Central and E-Biosci - how will they affect the provision of information to the health care professional?
All of these are major questions
which are taxing our profession and a look at the current situation and
trends will hopefully point out the way that health information as a subject
Health - a new paradigm?
According to recent articles in the medical press and much of the rhetoric coming from the U.K. government, the future of health care will be much more patient centred. Indeed much care is self care rather than health professional mediated care. Developments such as NHS Direct, where nurses act as a telephone triage service and the Internet version, NHS Direct Online, support this move towards the empowered patient. Although this has been popular since the early 90's, it is now seen to be the way that health care will go even by health care professionals. The sheer popularity of NHS Direct Online (200,000 hits a day from 5,000 visitors and rising) underlines this shift towards self help and the informed, empowered patient. Dr Tom Ferguson, as guru of this new movement in the States, suggested in his plenary speech at MLA in Vancouver in 2000, that patients in the United States were moving from medical practices that had no e-mail facilities to those that had1.
The patient is being empowered by the increasing availability of information on the Internet and the growing availability of other forms of digital delivery such as health channels on digital television and WAP delivery on mobile phones.
Figure 1: The changing face
of health care
Figure 1 shows how the emphasis on
health care will change over the next 10 to 20 years. The move is away
from the reliance on the health care professional to self care and the
new role of the professional as facilitator and partner.
Although many exaggerated claims have been made for the Internet, like it or loathe it, it is now a way of life for everyone from health information professionals to the wider public. 49% of the UK population have access to the Internet, 63% have mobile phones2. Health is now the most popular subject on the Internet after sex!
This has thrown up some problems for health information professionals used to being intermediaries in the search process. Increasingly health care professionals and patients are carrying out their own searches, however badly constructed these may be. Another problem for health libraries in this era of cash limited budgets is the unknown costs of unlimited Internet connection. Interestingly enough this problem had already been faced in the 1980's with the question of access to on-line services. At that time, this problem had been solved by librarians acting as intermediaries between the end-user and the online service.
For librarians another key issue is CD-ROM vs the Internet. With the popularity of CD-ROM in the late 80's and 90's, many librarians invested in equipment to play CD-ROM's which could now be viewed as superfluous. This has been underlined with the proliferation of free Medline from the National Library of Medicine and other sources. CD-ROM suppliers were worried that sales of CD-ROM versions of Medline would drop dramatically overnight but this phenomena has failed to materialise. The reasons for this may be the investment that many libraries have made in CD-ROM equipment and the open ended use of the Internet and its financial implications. It would therefore appear that sales of Medline on CD-ROM have now stabilised.
However, developments in search engine technology and the use of the Z39.50 standard has led to software being developed, such as the Unified Search Environment from HCN, that would allow users to search across both databases and Web resources.
So what is the role of the health
information professional in this time of greater end user access to health
information and should we be worried?
Order from Chaos
The Internet is proving to be a great medium for the delivery of information and for purchasing through e-commerce. Any business without a web site is now seen as archaic. However the search engines that are used to retrieve that information are very difficult to control and certainly difficult to retrieve concise information. As with online searching, results can be narrowed down by the use of Boolean logic, so perhaps here is a role for the health information professional? Education and training in Internet searching for both health care professionals and patients may be a future role that needs to be embraced and the acquisition of teaching skills needs to be seriously considered.
Another key skill of librarians is classification and cataloguing - in the arena of the Internet this has now taken on the name of "metadata" - catalogue cards have become "Dublin Core". This concept has been taken up by the Resource Discovery Network in the U.K. and "hubs" such as BIOME are using librarians cataloguing skills to describe web resources and assign quality criteria (see below). Classification has also come to the fore in the latest trend in the information world - knowledge management, which is the latest trend in the business world. Knowledge management works by managing the knowledge that is inherent in both the staff and the business. This typically would include straight information but also what is in employee's heads - their know how. Of course librarians have been doing this for years. We manage the knowledge of healthcare but can also refer people to "a man who does" and we, theoretically know, where that information can be found in texts.
An example that underlines this is from the core library activity of classification. IBM in their Systems Journal had an excellent article written by Richard Evernden which describes a device called 'faceted classification'. It is presented as a technical tool for the Information Systems Architecture (ISA) Framework originally proposed by a person called Zachman.3 But wasn't faceted classification first developed by a librarian called S. R. Ranganathan in 1927 as part of something called Colon Classification4for libraries?
Librarians can also contribute towards good information design. We have been involved in searching, using a variety of search engines, for a long time - perhaps our accumulated knowledge of what constitutes a good or bad search engine should be put to use. There are so many badly designed web sites which ignore the needs of the user (unfortunately the British Library web site tends to fall into this category) that we should have a role in any web site that is being set up by our organisation.
Librarians have a lot to contribute
to the area of knowledge management and should start to promote themselves
in the organisation as the Chief Knowledge Officer. This proposed role
could include facilitation of searching, training in both searching and
critical appraisal of web sites, content review and promotion of web information
including creation of web sites and contributing to strategy implementation
plans for the hospital or, increasingly the health authority or primary
This is currently a huge area of concern with spurious information appearing on the Internet as well as useful information about rare conditions. The ease of self-publishing and the lack of peer review has led to a proliferation of medical information on the Internet. Problems include: the indiscriminate, unwieldy retrieval of material from search engines, which mostly lacks context; the prevalence of word 'spamming' or 'spamdexing' through the repetition of keywords; and inclusion of spurious keywords. This has serious implications for relevancy ranking with search engines.
An article by Bower which found that the Internet was seeing the growth of unverified health claims such as the sites that claimed that shark cartilage inhibits tumour growth and cancer, and that melatonin strengthened the body's immune system5. The American College of Gastroenterology concluded that 'Surfing the Net May be Hazardous to Your Health'.
The reliability of health information is also of concern. Impicciatore et al reported on'The reliability of health information for the public on the world wide web: systematic survey of advice on managing fever in children at home' which concluded that 'only a few web sites provided complete and accurate information for this common and widely discussed condition. This suggests an urgent need to check public oriented healthcare infonnation on the internet for accuracy, completeness, and consistency'6.
The difficulties with evaluating web pages can be summarised as:
The electronic BMJ has published criteria for evaluating health-related web- sites which are available at http://www.bmj.com/cgi/reprint/318/7184/647.pdf.
DISCERN, which is an instrument for judging the quality of written consumer health information on treatment choices, can be found at http://www.discern.org.uk/. This is a checklist of 16 questions for consumers and patients to evaluate websites, developed, standardised and validated by working with 13 national self-help groups; however, it can be very time-consuming and subjective. Also, it seems to assume that consumers accept that care should be based on objective studies and understand the principles of 'evidence-based practice'.
MedCertain is another quality rating system using 'MedPICS', which is a system for certification and rating of trustworthy and assessed health information on the Net7.
Certain criteria can be used when assessing websites.
1. The context of the website
One of the big questions which is concentrating the minds of today's librarians is the question of access versus holdings. The advent of the electronic journal on the Web has caused a huge re-examination of subscriptions - do we go print or electronic? A recent survey suggested that about 8,000 journals are now available as electronic full text on the Internet and this number is growing with publishers such as Elsevier and Karger making their publications available and new publication initiatives such as Highwire Press which was set up purely to make journal publications available on the Net.. This can be compared to the 32,000 printed biomedical journals that were identified by Wyatt 10 years ago8 . This figure has recently been disputed by medical librarians and discussions on a mailing list has put the number nearer to 15,000. A recent straw poll by the British Library suggested that there may be as many as 1,000,000 serial publications in all subjects.
This disparity has led to the concept of a "Hybrid" library of print and electronic materials. Librarians are agonising over whether to go print or electronic and this situation is not being eased by the publishers as, at present, many journals will only allow electronic access as part of a print subscription or on the payment of an additional fee. Currently publishers are concerned that they may lose revenue by offering "pay as you go" per article prices which is an area that document suppliers, such as the British Library, are keen to develop. The development of PubMed Central and Biomed Central, both medical versions of the Los Alamos e-print archive, has also got publishers concerned, although the radical nature of the original proposal has recently been toned down.
Concerns over publication prices
has also led to the phenomena of "Consortium buying". Academic and health
libraries are getting together into groups, usually regionally, to get
the best deal from subscription agents on journal prices. How this effects
electronic versions of journals remains to be seen.
The Digital Library
The concept of the "Digital" or "Virtual" Library has become increasingly popular over the last few years. The idea is for any published material to be made available to any user at any time and any place through the medium of the Internet or other networks.
The British Library, for instance, has decided that the development of the digital library will enable it to embrace the digital information age with its increasing proliferation of, and demand for, digital products and services. Digital technology will be used extend the Library's unparalleled collection to include digital media and to preserve such material for the national archive. Access to the collection will become boundless with users from all over the world, at any time, having simple, fast access to digitised materials using computer networks, particularly the Internet. The British Library's initiative will contribute to the creation of a national digital information network together with the New Library: The People's Network public library initiative and the National Grid for Learning plan.9 After an unsuccessful PFI procurement, it would appear that the British Library Digital Library programme is so important, that it will be going ahead anyway with government funding.
The interest in digital libraries is perhaps underlined by the fact that, to people outside the Library and Information profession, everything is theoretically available full text on the Web.
But digital libraries are not just about journals as can be shown by the growth of projects such as Project Gutenberg10 where classic works of literature are being digitised and the British Library's own "Electronic Beowulf" project11 which is being carried out with the assistance of the University of Kentucky and the innovative Turning the Pages project. A recent contract has been signed with The US National Library of Medicine to digitise two medical works - the 1735 Curious Herbal of Elizabeth Blackwell and the De Fabrica Corporis Humani of Andreas Vesalius.
Apart for these two recent projects,
the majority are very much humanities projects and reflect the tendency
towards "cultural" items as the main direction of digitisation programmes.
However, in the health and medical area we have seen the growth of multimedia
as a teaching modality, especially in anatomy and physiology, and this
in turn, has brought further funding and technical problems to libraries.
The National Electronic Library for Health (NeLH) - Opportunity or Threat?
The NeLH was proposed as part of the "Information for Health" strategy released in 199812 The NeLH is seen as a major strand of the strategy and one which is designed to deliver information and knowledge to both the healthcare professional and the public. This initially may have caused some concern to libraries in the NHS and other sectors, not least of which is the role of librarians within this project. As part of the NeLH a "Librarian Development Programme" has been proposed which will develop library skills alongside the development of the NeLH.
The other concern for libraries initially was the whole question of electronic journals and licensing for, potentially, the whole of the U.K. population. The NeLH as originally planned would allow access to any healthcare professional and any patient, not only to knowledge bases such as Cochrane but also electronic journals. The licensing issues for potential access by any member of the NHS would be huge! The public interface for NeLH is now NHS Direct Online and Cochrane appears to be only available to those with nhs.uk addresses.
Although the NeLH is seen as an important
strand of "Information for Health" some concerns could be raised about
the lack of user studies i.e. who would use the NeLH, an apparent ignorance
of previous projects such as the Integrated Academic Information Management
System13 in the USA and the problems reported about using the
computer in the consultation14
The Librarian at the end of the Universe?
With the drive towards 24/7/365 access
to health information, a recent interest has arisen in the concept of a
virtual librarian using videoconferencing technology. This would rely on
the fact that, around the world, there are always librarians at work. For
instance, someone in the U.K. might wish to consult a librarian at 3am
in the morning (it happens!) but would be unable to do so in the U.K. However
health librarians are at work in Australia, so a videoconference link could
allow the reader in the U.K. to ask a question of the librarian in Australia.
This would not do away with the library profession as such, but would make
the librarian an international commodity.
So where now?
With the emphasis firmly on the informed, empowered patient should the health library be opened up for patient access and should health librarians and public librarians be in discussion on provision of health information? If we are not to be sidelined - I think it is time to talk.
Developments such as Patientline in the U.K., where T.V. and telephone are delivered to the patients bedside, offer opportunities for delivery of health information to the point of care, surely an indicator for a move towards clinical librarianship where both health care professional and patient can be informed of the evidence to support their treatment.
How librarians can help to exploit the new technologies, such as WAP and digital TV, also needs to be explored and these developments may point to a convergence with our health informatics colleagues. Interestingly in the USA, health care librarians and health informaticians work closely together. This is perhaps because the National Library of Medicine funds much of the medical informatics work in the USA. In the U.K. this has happened to a lesser degree and has perhaps been hindered by the Department of Health's definitions of "information" i.e. data, and "intelligence" i.e. what we librarians do. There is also no equivalent central medical library of the U.K. although the British Library, the BMA and the RSM together could, and perhaps should, take on this role. A first step towards this "bonding" was made in the U.K. in 1997 through a joint meeting entitled Advances in Clinical Knowledge Management organised by the Health Libraries Group of the Library Association and the British Medical Informatics Society. This has become an annual event, - but much more could be done especially with the NeLH coming on-line and the current revalidation of health informatics as a profession in the U.K.
Will data mining, currently in vogue with epidemiologists and statisticians, be applied to patient records and will this be useful for "real" evidence based health care? Will we get real results from real patients on which drugs work and which don't?
And, looking to the next 50 years, will William Gibson's vision of cyberspace as described in his novel "Neuromancer" become reality? Will we be able to plug into the 'Net through a socket directly connected to our neural system? Will the library become truly virtual with virtual books, journals and "CyberMedline"?
Now is the time to get ahead of the
game and to start keeping up with the literature of informatics - the librarian
of the 21st century needs to look towards health informatics
if they wish to become fully fledged "Cyberlibrarians"
1. Ferguson, T: Digital Doctoring:
Health Online and the Empowered Medical Consumer. Medical Library Association
Conference, Vancouver, May 2000