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analyzes the information practices of three physical facilities and two virtual facilities or websites in addressing |
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The following report analyzes the information practices of three physical facilities and two‘virtual’ facilities or websites in addressing a single focal question: what treatments are currently available for lung cancer? The three physical facilities — the Consumer Health Information Service (CHIS), the Canadian Cancer Society (CCS) and the Learning Centre of the Canadian College of Naturopathic Medicine (LRC) — were visited and the focal question was posed to each; responses were analyzed and other issues such as the services provided, available resources, sources of information, quality control and access/privacy rights arising from core issues in the 1210 course were also noted. Attention was directed toward whether distinctions were made between socalled ‘scientifically valid’ information and that which is considered to be of dubious quality, such as Complementary and Alternative Medicine (CAM) health information. Research revealed that little information was derived with respect to the focal question, which led to greater focus on the information practices of each facility; the research revealed CHIS to have the greatest range of health information and services with all medical areas and perspectives represented without undue ideological biases or ownership concerns. CHIS also acted as a referral service for users to consult additional arms of the health care system and throughout the project were willing to discuss their information practices and policies and provided references to other facilities. The Canadian Cancer Society provided both in-person and telephone reference service through its Cancer Information Service and though staff were accessible by telephone, some were concerned about the motives of the research. The CCS provided both print and web-based health information only with respect to cancer in addition to other services within the community. An asymmetry was discovered with respect to the scope of information provided; no Complementary and Alternative Medicine (CAM) information was included in telephone reference interviews though this was included on their website. This ideological approach to health information was justified by the CCS on the basis of a lack of scientific validity. 5 The expectations that the LRC of the CCNM might have only provided health information from a CAM/naturopathic perspective were not borne in the research. In addition, the LRC made a great deal of its information resources accessible to the public despite its ostensible role as a private library serving the needs of the CCNM. ... A comparison of all three physical facilities has been included in the report. The two websites —Health Canada’s ‘Lung Cancer in Canada’ website and the ‘National Cancer Institute’ website from the United States — were also analyzed on dimensions of navigability, search capabilities and available information with respect to the focal question. The comparisons and analyses of the websites centred on issues of access, privacy, content and sources of information. As with the physical facilities, focus was directed at the presence/absence of CAM health information. Analyses of the physical and virtual facilities were combined to form conclusions based on the research conducted. ... ” One aspect of maintaining and improving the health of Canadians is the need to secure access to health information; as universal access to health care is a concept deeply entrenched in the mindset of most Canadians, universal access to health care information would seem to be valued just as much. Echoing these sentiments, on November 7th, 2002 Roy Romanow, Commissioner of the Commission on the Future of Health Care in Canada, cited “better information” as being “critical for primary health care” in Canada (Advisory Committee on Health Infostructure, 2002), allowing patients to make informed choices on available services and treatment options. More and more it seems that Canadians are seeking information as it concerns their health, a phenomenon encouraged by Federal and Provincial governments in Canada that seek to reduce the burden of escalating health care costs by improving “efficiency, effectiveness, equity, access, quality and accountability within the health sector” (Advisory Committee on Health Infostructure 2002). The ability to furnish citizens with the means to secure access to health information has been made possible not only by increased efforts and focus on the part of government; it has also been made possible by virtue of emerging technologies such as the Internet and the World Wide Web, which allow for the delivery and accessing of vast amounts of information at less cost than has traditionally been incurred by governments. Whereas traditional methods of health information provision, such as hospitals, medical professionals, libraries and non-profit medical organizations are still relied upon to provide reliable and much-needed health information, the Canadian government has begun referring to a ‘health infostructure’, one aspect of which is the coordinated delivery of health information through the integration of information systems, such as computers linked to each other via the Internet and/or World Wide Web and/or the cooperation of health care facilities. It is believed that this will allow for the possibility of information being found anywhere by anyone (Tactical Plan for a Pan-Canadian Health Infostructure [Update] 2001). 7 Demand and access to health information raises many important issues. ... These attempts require that citizens have unfettered access to health information and at a cost that does not marginalize segments of the population. Political economy arguments favour the position that knowledge and/or information should be free given its inherent value as a public good and the low marginal costs involved in its production and distribution. ... If ‘information’ is the stuff of knowledge, then the question arises ‘what is information?’ Information as it relates to health would seem to be that which allows people to maximize the quality of their life, and at first glance would seem to have an objective quality. However, it has been suggested that information is a product of social construction and as such it takes on more a subjective quality based on the “social practices, structures, technologies and interests of those who create, organize, provide, seek and use it” (Clement 2002). ... These contrasting schools at times claim to have their own particular ‘information’ and the focus of this report is an investigation into how health ‘information’ is produced, the qualities it possesses, and how it can be accessed and by whom. ... ” Three physical facilities were identified as likely sources of information with respect to our focal question: the Consumer Health Information Service located within the Toronto Reference Library; the Canadian Cancer Society; and the Canadian College of Naturopathic Medicine. The choice of the Canadian College of Naturopathic Medicine was made after group consultations determined that it would be helpful for the purposes of the exercise to consult a facility specializing in Complementary and Alternative Medicine (CAM), as their view of what constituted health information might differ from the other facilities and effort was made to explore whether this was indeed the case. In addition to the three physical facilities, we also identified two ‘virtual facilities’ — Health Canada’s ‘Lung Cancer in Canada’ website and the ‘National Cancer Institute’ website from the United States — as likely sources for information on lung cancer treatments given the rapid growth of health information available on the World Wide Web. The aforementioned websites were evaluated on similar dimensions as the physical facilities where applicable and observations and evaluations were made and recorded for each. The inherent differences between the physical and virtual facilities were reflected in the evaluations employed and the headings used in the text of the report. ... 9 Physical facilities Consumer Health Information Service The Consumer Health Information Service (CHIS) is a comprehensive public information service located in the Toronto Reference Library funded by the Ontario Ministry of Health and Long-Term Care. ... They also provide ‘information packages’ for those living outside the GTA calling area. ... Staff also search for articles from popular medical, health, and fitness publications to include in their subject files and in the information packages they create and furnish to members of the public. The purpose of CHIS, as explained to users, is to “provide public access to a wide range of health and medical information, not to give medical advice or interpretation. Information provided by CHIS does not imply recommendation or endorsement. ... 10 First impressions CHIS is located on the third floor of the Toronto Reference library, an well-lit, spacious modern facility that is fully accessible to patrons with physical disabilities; elevators, ramps, and state-ofthe- art equipment facilitate efficient navigation and access to the Library’s resources. ... The CHIS front desk has many signs posted signalling the Consumer Health Information Service and these signs include lists of services. ... Electronic databases — CHIS provides walk-in access to electronic databases such as Health Reference Center and Alt-HealthWatch, which patrons can search for health information. Staff will instruct patrons in searching for information. CHIS website – CHIS provides a great deal of information about its service via the TPL’s website at http://www. ... In addition to providing information about the service itself, CHIS’ website includes Health Navigators, brief guides to sources of information for selected health topics, that can be printed out remotely or obtained in person. Focal question and treatment CHIS reported that they did not have a great deal of information dealing specifically with Lung Cancer and explained that there was not as much demand for this type of information in comparison with areas such as breast cancer or diabetes. ... The staff member was patient while directing the researcher to various sources of information; she sensed that the researcher’s familiarity with library catalogues and database searching and as such her tendency was to provide access to sources of information as opposed to the information itself. ... 12 Information received The information received consisted of newspaper clippings (one of which related to a recent breakthrough in the herbal treatment of lung cancer), magazine articles, monographs (one of which dealt with shark cartilage as a form of lung cancer treatment) and several pamphlets. ... When asked about CAM materials dealing with lung cancer, the researcher was introduced to the former Head Librarian from the Canadian College of Naturopathic Medicine, currently on staff at CHIS, who recommended both the CCNM’s Learning Resources Centre and the Robert Schad Clinic as potential sources of health information in this area. Relevant observations The readiness with which references were provided to other sources of information outside of CHIS reflected CHIS’ adherence to providing access to as much relevant information as possible. The researcher was struck by CHIS’ position as one source of health information and not as the only source. As a means of providing the user with as much information as possible, the lack of proprietary control might suggest a more cooperative model of information provision in addition to a base for the concept of a health infrastructure. Sources of information and quality assurance CHIS information comes from monographs are purchased from established publishers of medical literature. Medical websites are monitored for the latest developments in areas of research and databases are searched by staff to obtain the latest information to include in subject files. ... Titles such as the ‘Townsend letter for Doctors and Patients’, ‘Alternative Complementary Therapies’ and ‘CAM at the NIH’ indicate that CHIS maintains a range of information sources. Databases such as Medline, OVID and other electronic resources are searched and any information that is deemed relevant to CHIS is incorporated into their Health Navigators and information packages. ... Decisions as to which titles to include, whether as ‘recommended’ or ‘essential’ readings, are made by consulting newspaper articles/reviews, book reviews appearing in Library Journals, websites such as ONCO at the University of Pennsylvania, lists such as the ‘Brandon-Hill list of recommended medical readings’, and notification lists from medical publishers All staff members are involved in the preparation of CHIS materials/information the monitoring of websites, journal and periodical articles, developments in the medical field, book and publisher’s reviews, etc. The information provided derives from sources within the medical community; CHIS does not conduct research of any kind, and this is reflected in the nonideological view taken with respect to the information they provide. CHIS staff inform users that they are not health professionals and as such see themselves less with creating information and more with providing access. ... For these users, information packages can be sent out. ... The policy regarding eligibility for information packages is relatively straightforward and geographically-based. Anyone who visits the CHIS either in person or by proxy (family member, friend) is able to use all resources available at CHIS; For those who are determined to live outside out the GTA, a telephone interview is conducted to determine where the person lives and once it has been determined that attendance at CHIS is not possible, eligibility for information packages is established. |
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