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      Portals to Wonderland: Health portals lead to confusing information about the effects of health care

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          Abstract

          Background

          The Internet offers a seemingly endless amount of health information of varying quality. Health portals, which provide entry points to quality-controlled collections of websites, have been hailed as a solution to this problem. The objective of this study is to assess the extent to which government-run health portals provide access to relevant, valid and understandable information about the effects of health care.

          Methods

          We selected eight clinically relevant questions for which there was a systematic review, searched four portals for answers, and compared the answers we found to the results of the systematic reviews.

          Results

          Our searches resulted in 3400 hits, 155 of which mentioned both the condition and the intervention in one of the eight questions. Sixty-three of the 155 web pages did not give any information about the effect of the intervention. Seventy-seven qualitatively described the effects of the intervention. Twenty-six of these had information that was too unclear to be categorised; 15 were not consistent with the systematic review; and 36 were consistent with the review, but usually did not mention what happens without the intervention, what outcomes have been measured or when they were measured. Fifteen web pages quantitatively described effects. Four of these were abstracts from the systematic review, nine had information that was incomplete and potentially misleading because of a lack of information about people not receiving the intervention and the length of follow-up; one had information that was consistent with the review, but only referred to three trials whereas the review included six; and one was consistent with the review.

          Conclusion

          Information accessible through health portals is unlikely to be based on systematic reviews and is often unclear, incomplete and misleading. Portals are only as good as the websites they lead to. Investments in national health portals are unlikely to benefit consumers without investments in the production and maintenance of relevant, valid and understandable information to which the portals lead.

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          Most cited references26

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          Empirical studies assessing the quality of health information for consumers on the world wide web: a systematic review.

          The quality of consumer health information on the World Wide Web is an important issue for medicine, but to date no systematic and comprehensive synthesis of the methods and evidence has been performed. To establish a methodological framework on how quality on the Web is evaluated in practice, to determine the heterogeneity of the results and conclusions, and to compare the methodological rigor of these studies, to determine to what extent the conclusions depend on the methodology used, and to suggest future directions for research. We searched MEDLINE and PREMEDLINE (1966 through September 2001), Science Citation Index (1997 through September 2001), Social Sciences Citation Index (1997 through September 2001), Arts and Humanities Citation Index (1997 through September 2001), LISA (1969 through July 2001), CINAHL (1982 through July 2001), PsychINFO (1988 through September 2001), EMBASE (1988 through June 2001), and SIGLE (1980 through June 2001). We also conducted hand searches, general Internet searches, and a personal bibliographic database search. We included published and unpublished empirical studies in any language in which investigators searched the Web systematically for specific health information, evaluated the quality of Web sites or pages, and reported quantitative results. We screened 7830 citations and retrieved 170 potentially eligible full articles. A total of 79 distinct studies met the inclusion criteria, evaluating 5941 health Web sites and 1329 Web pages, and reporting 408 evaluation results for 86 different quality criteria. Two reviewers independently extracted study characteristics, medical domains, search strategies used, methods and criteria of quality assessment, results (percentage of sites or pages rated as inadequate pertaining to a quality criterion), and quality and rigor of study methods and reporting. Most frequently used quality criteria used include accuracy, completeness, readability, design, disclosures, and references provided. Fifty-five studies (70%) concluded that quality is a problem on the Web, 17 (22%) remained neutral, and 7 studies (9%) came to a positive conclusion. Positive studies scored significantly lower in search (P =.02) and evaluation (P =.04) methods. Due to differences in study methods and rigor, quality criteria, study population, and topic chosen, study results and conclusions on health-related Web sites vary widely. Operational definitions of quality criteria are needed.
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            Sharing decisions with patients: is the information good enough?

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              Examination of instruments used to rate quality of health information on the internet: chronicle of a voyage with an unclear destination.

              This study updates work published in 1998, which found that of 47 rating instruments appearing on websites offering health information, 14 described how they were developed, five provided instructions for use, and none reported the interobserver reliability and construct validity of the measurements. All rating instrument sites noted in the original study were visited to ascertain whether they were still operating. New rating instruments were identified by duplicating and enhancing the comprehensive search of the internet and the medical and information science literature used in the previous study. Eligible instruments were evaluated as in the original study. 98 instruments used to assess the quality of websites in the past five years were identified. Many of the rating instruments identified in the original study were no longer available. Of 51 newly identified rating instruments, only five provided some information by which they could be evaluated. As with the six sites identified in the original study that remained available, none of these five instruments seemed to have been validated. Many incompletely developed rating instruments continue to appear on websites providing health information, even when the organisations that gave rise to those instruments no longer exist. Many researchers, organisations, and website developers are exploring alternative ways of helping people to find and use high quality information available on the internet. Whether they are needed or sustainable and whether they make a difference remain to be shown.
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                Author and article information

                Journal
                BMC Med Inform Decis Mak
                BMC Medical Informatics and Decision Making
                BioMed Central (London )
                1472-6947
                2005
                15 March 2005
                : 5
                : 7
                Affiliations
                [1 ]Informed Choice Research Department, Norwegian Health Services Research Centre, Pb. 7004 St. Olavs Plass, 0130 Oslo, Norway
                Article
                1472-6947-5-7
                10.1186/1472-6947-5-7
                1079858
                15769291
                871c11a0-e24d-4d5e-834d-29b3a70c26d4
                Copyright © 2005 Glenton et al; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 29 November 2004
                : 15 March 2005
                Categories
                Research Article

                Bioinformatics & Computational biology
                Bioinformatics & Computational biology

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