ArticleInteractive journal of medical research2016
Adopting Quality Criteria for Websites Providing Medical Information About Rare Diseases.
Article in Interactive journal of medical research, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 8 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
8 citing papers in PubMed.
- The more you know, the better you act? Institutional communication in Covid-19 crisis management.Technological forecasting and social change · 2021Article
- Undergraduate Medical Students' Search for Health Information Online: Explanatory Cross-Sectional Study.JMIR medical informatics · 2020Article
- Integrating patient perspectives in medical decision-making: a qualitative interview study examining potentials within the rare disease information exchange process in practice.BMC medical informatics and decision making · 2019Article
- Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study.JMIR research protocols · 2018Article
- Development of a Technology-Supported, Lay Peer-to-Peer Family Engagement Consultation Service in a Pediatric Hospital.AMIA ... Annual Symposium proceedings. AMIA Symposium · 2018Article
- Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians.Interactive journal of medical research · 2017Article
- Thoracic Surgery Information on the Internet: A Multilingual Quality Assessment.Interactive journal of medical research · 2017Article
- Rare Diseases on the Internet: An Assessment of the Quality of Online Information.Journal of medical Internet research · 2017Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
14 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundThe European Union considers diseases to be rare when they affect less than 5 in 10,000 people. It is estimated that there are between 5000 and 8000 different rare diseases. Consistent with this diversity, the quality of information available on the Web varies considerably. Thus, quality criteria for websites about rare diseases are needed.
objectiveThe objective of this study was to generate a catalog of quality criteria suitable for rare diseases.
methodsFirst, relevant certificates and quality recommendations for health information websites were identified through a comprehensive Web search. Second, all considered quality criteria of each certification program and catalog were examined, extracted into an overview table, and analyzed by thematic content. Finally, an interdisciplinary expert group verified the relevant quality criteria.
resultsWe identified 9 quality certificates and criteria catalogs for health information websites with 304 single criteria items. Through this, we aggregated 163 various quality criteria, each assigned to one of the following categories: thematic, technical, service, content, and legal. Finally, a consensus about 13 quality criteria for websites offering medical information on rare diseases was determined. Of these categories, 4 (data protection concept, imprint, creation and updating date, and possibility to contact the website provider) were identified as being the most important for publishing medical information about rare diseases.
conclusionsThe large number of different quality criteria appearing within a relatively small number of criteria catalogs shows that the opinion of what is important in the quality of health information differs. In addition, to define useful quality criteria for websites about rare diseases, which are an essential source of information for many patients, a trade-off is necessary between the high standard of quality criteria for health information websites in general and the limited provision of information about some rare diseases. Finally, transparently presented quality assessments can help people to find reliable information and to assess its quality.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.