September 23, 2021

Research Article: “Rare Diseases on the Internet: An Assessment of the Quality of Online Information”

The following article was recently published by the Journal of Medical Internet Research. 

Title

Rare Diseases on the Internet: An Assessment of the Quality of Online Information

Authors

Frédéric Pauer
Center for Health Economics Research Hannover (CHERH), Leibniz University Hannover, Hannover, Germany

Svenja Litzkendorf
Center for Health Economics Research Hannover (CHERH), Leibniz University Hannover, Hannover, Germany

Jens Göbel
Medical Informatics Group (MIG), University Hospital Frankfurt, Frankfurt am Main, Germany

Holger Storf
Medical Informatics Group (MIG), University Hospital Frankfurt, Frankfurt am Main, Germany

Jan Zeidler
Center for Health Economics Research Hannover (CHERH), Leibniz University Hannover, Hannover, Germany

Johann-Matthias Graf von der Schulenburg
Center for Health Economics Research Hannover (CHERH), Leibniz University Hannover, Hannover, Germany

Source

Journal of Medical Internet Research 2017;19(1):e23
doi: 10.2196/jmir.7056

Abstract

Background: The importance of the Internet as a medium for publishing and sharing health and medical information has increased considerably during the last decade. Nonetheless, comprehensive knowledge and information are scarce and difficult to find, especially for rare diseases. Additionally, the quality of health or medical information about rare diseases is frequently difficult to assess for the patients and their family members.

Objective: The aim of this study is to assess the quality of information on the Internet about rare diseases. Additionally, the study aims to evaluate if the quality of information on rare diseases varies between different information supplier categories.

Methods: A total of 13 quality criteria for websites providing medical information about rare diseases were transferred to a self-disclosure questionnaire. Identified providers of information on the Internet about rare diseases were invited to fill out the questionnaire. The questionnaire contained questions about the information provider in general (eg, supplier category, information category, language, use of quality certificates, and target group) and about quality aspects that reflect the 13 quality criteria. Differences in subgroup analyses were performed using t tests.

Results: We identified 693 websites containing information about rare diseases. A total of 123 questionnaires (17.7%) were completely filled out by the information suppliers. For the remaining identified suppliers (570/693, 82.3%), the questionnaires were filled out by the authors based on the information available on their website. In many cases, the quality of websites was proportionally low. Furthermore, subgroup analysis showed no statistically significant differences between the quality of information provided by support group/patient organization compared to medical institution (P=.19). The quality of information by individuals (patient/relative) was significantly lower compared to information provided by support group/patient organization (P=.001), medical institution (P=.009), and other associations and sponsoring bodies (P=.001) as well.

Conclusions: Overall, the quality of information on the Internet about rare diseases is low. Quality certificates are rarely used and important quality criteria are often not fulfilled completely. Additionally, some information categories are underrepresented (eg, information about psychosocial counseling, social-legal advice, and family planning). Nevertheless, due to the high amount of information provided by support groups, this study shows that these are extremely valuable sources of information for patients suffering from a rare disease and their relatives.

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About Gary Price

Gary Price (gprice@mediasourceinc.com) is a librarian, writer, consultant, and frequent conference speaker based in the Washington D.C. metro area. Before launching INFOdocket, Price and Shirl Kennedy were the founders and senior editors at ResourceShelf and DocuTicker for 10 years. From 2006-2009 he was Director of Online Information Services at Ask.com, and is currently a contributing editor at Search Engine Land.

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