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Table 5 Included websites

From: Who can you trust? A review of free online sources of “trustworthy” information about treatment effects for patients and the public

Website Cochrane Evidence
www.cochrane.org/evidence
Informed Health
www.informedhealth.org
PubMed Health
https://www.ncbi.nlm.nih.gov/pubmedhealth/
Link to information about the website https://www.cochrane.org/what-is-cochrane-evidence a
https://www.cochrane.org/about-us
https://www.informedhealth.org/informed-health.2169.en.html https://www.ncbi.nlm.nih.gov/pubmedhealth/finding-systematic-reviews/
Stated purpose “Cochrane Reviews are systematic reviews of primary research in human health care and health policy, and are internationally recognized as the highest standard in evidence-based health care resources. They investigate the effects of interventions for prevention, treatment, and rehabilitation.”
“We are working to make this evidence accessible here on cochrane.org by creating summaries of these systematic review findings.”
InformedHealth.org is the English-language version of the German website Gesundheitsinformation.de. By publishing this bilingual website, the Institute for Quality and Efficiency in Health Care (IQWiG, Germany) fulfils part of its legal mandate to educate the public in matters of health. The website addresses both patients and (healthy) consumers by offering a wide range of different topics.” “PubMed Health specializes in systematic reviews of clinical effectiveness research. We include:”
 • Plain language summaries and abstracts of Cochrane reviews
 • Abstracts (short technical summaries) of systematic reviews in DARE, the Database of Abstracts of Reviews of Effects—many of them with a critical summary of the review
 • Full texts of reviews froma growing group of public agencies
 • Information developed by public agencies for consumers and clinicians that is based on systematic reviews
 • Methods resources about the best research and statistical techniques for systematic reviews and clinical effectiveness research
“In May 2016, there were over 40,000 systematic reviews at PubMed Health.”
Based on systematic reviews
Is information about the treatment effects based on systematic reviews?
Yes Yes (“mainly”)
Research summaries: These are objective, brief summaries of the latest findings on a research question described in the title. They usually summarize the results of studies, for instance the results of one or (rarely) several systematic reviews or IQWiG reports. They also describe the study/studies in more detail and explain how the researchers came to their conclusions.”
“We mainly use systematic reviews of studies to answer questions about the benefits and harms of medical interventions.”
Yes
Links to systematic reviews
Are there links to the systematic reviews of treatment effects?
Yes Yes (when used as a Source) Yes
Size of effects
Is information provided about the size of effects or balance between benefits and harms?
Inconsistent a Yes a Inconsistent a
Certainty of the evidence
Is information provided about the certainty of the evidence about treatment effects?
Inconsistent
There is inconsistent use of headings and content in the summaries.
Inconsistent
The certainty of the evidence is not reported consistently.
Inconsistent
There is inconsistent use of headings and content in the plain language summaries and the technical summaries.
Links to ongoing trials
Does the website provide links to registered/ongoing clinical trials?
No No No
Updating
Isinformation provided about how up-to-date information about treatment effects is?
Yes
Date of publication included for all summaries. Date of last search provided for some, but not all.
Yes
Updated and Next update dates on every page.
Date of publication for Sources.
Date of last search not reported.
Yes
Date of publication is available for all reviews. Date of last search provided for some, but not all.
Other information
Is other information provided?
No
The summaries include some background information, the authors’ conclusions, and links to other summaries that may be of interest.
Yes
Symptoms, causes, outlook, diagnosis, everyday life, learn more, extras
Yes
Three books for the general public on understanding research results, some other methods resources, Behind the Headlines, and some background information
Navigation
What tools are there for searching, sorting, and filtering information?
Simple search (possible to use Boolean logic)b
Sort by relevance, alphabetical, or date
Filter by health topics, or new and updated
Simple search (not possible to use Boolean logic)b
Sort by relevance or date
Filter by topic areas or alphabetical
Simple search (possible to use Boolean logic)b
Sorted by date of publication
Filters for Article types, when information was added to PubMed Health, Content providers, and Reviews with a quality assessment
It is also possible to search using the glossary (“Health A-Z”) which includes links to summaries for consumers.
Jargon
Is there a glossary or are there explanations of research and medical terms?
Plain language summaries with some variability in how well written they are.
Pop-up definitions for some research and medical terms (not links to longer explanations).
Glossary of terms relevant for Cochrane Reviews, not medical terms.b
Plain language information written for patients and the public.
Hyperlinks to background information (not pop-up definitions).
Glossary of “medical and scientific” terms (few research terms included).
There are no plain language summaries for most of the 40,000+ systematic reviews.
Hyperlinks to information in the glossary (not pop-up definitions).
Glossary of terms (“Health A-Z”) that includes both medical and research terms.
Advantages
What are the main advantages of the website?
Plain language summaries of a large number of systematic reviews of treatment effects translated to several other languages. Wide range of topics with evidence-based information about treatment effects together with other information for patients and the public. A large number of systematic reviews of treatment effects with plain language summaries for Cochrane reviews and some additional reviews, and an extensive glossary.
Disadvantages
What are the main disadvantages of the website?
Inconsistent reporting.
No other information (besides treatment effects).
Inconsistent reporting and certainty of the evidence is not reported. Inconsistent reporting.
Most reviews do not have plain language summaries.
Suggestions for the website
How could the website be improved?
Use consistent headings and consistently report benefits and harms (or the lack of evidence), quantitative effect estimates, and the certainty of the evidence (using GRADE [21] or a similar approach) and include links to explanations about what the grades mean.
Provide information about Cochrane Evidence policies and how summaries are prepared on the website and make this information easier to find.
Add links to other information for patients and the public or include relevant information in the plain language summaries.
Add a search tool that is specific for Cochrane Evidence (rather than for the entire Cochrane.org website, and improve the search (including removal of OR between words as the default).
Improve the glossary and make it easier to find, use pop-up definitions more consistently, and include links to longer explanations.
Use consistent headings and consistently report benefits and harms (or the lack of evidence), quantitative effect estimates, and the certainty of the evidence (using GRADE [21] or a similar approach) and include links to explanations about what the grades mean.
Standard explicit reporting of when information about treatment effects is based on a systematic review and when one was not available.
Include date of last search.
Use pop-up definitions and include more research terms (e.g. GET-IT).
Improve the search tool so that it is easier to find information.
Make it possible to use Boolean logic in searches.
Make it easier to browse.
Use pop-up definitions.
Add links to other information for patients and the public.
Suggestions for all three websites Provide simple instructions regarding the use of Boolean logic and the use of quotations to limit searches
Include links to ongoing trials
Tips for users
How should the website be used by someone looking for information about treatment effects?
This website offers quick access to plain language summaries of over 7000 systematic reviews. Access to the full systematic reviews is free for all of the reviews in many countries and to some reviews (ones that are more than 1-year old or that have paid open access) everywhere. However, the quality of the summaries (and underlying systematic reviews) varies, and the navigation tools are rudimentary, sometimes making it hard to find information.
Cochrane plain language summaries also can be found in PubMed Health and information about treatment effects is frequently based on Cochrane Reviews in Informed Health.
This website provides plain language information about the effects of treatments that is mainly based on systematic reviews together with other information for a large number of conditions. However, it can be difficult to find information. Research summaries are found for some, but not all treatments. This website offers access to over 40,000 summaries of systematic reviews, some of which (over 8000) include plain language summaries. Access to some of the full systematic reviews is free. It also includes an extensive glossary with both medical and research terms. However, the quality of the summaries (and underlying systematic reviews) varies. There are many more reviews than in Cochrane Evidence, but most do not include plain language summaries.
Tips for all three websites Limit searches by using Boolean logic (inserting AND between terms (e.g. for the condition and for the treatment) and quotation marks (to indicate that words need to be next to each other; e.g. “back pain”. Use OR between different terms for the condition or between different terms for the treatment (e.g. “knee replacement” OR surgery) to expand searches.
Consider searching Epistemonikos if you are unable to find trustworthy information (based on a systematic review) about the effects of treatments of interest using these databases. Cochrane reviews can also be found in Epistemonikos, a free-access database that contains scientific summaries for over 100,000 systematic reviews (not all of treatment effects) and plain language summaries for some reviews. Most if not all of the reviews in PubMed Health also can be found in Epistemonikos, It may be easier to search than PubMed Health and it includes translations to several other languages. However, it is not intended for patients and the public.
Consider searching for links to ongoing trials, if there is important uncertainty about the effects of relevant treatments, using the World Health Organization International Clinical Trials Registry Platform Search Portal, NHS Choices or a clinical trials registry.
  1. aThe headings used were inconsistent for all three
  2. bWe got an error message (“A technical error has occurred. Please try again later.”) when we used AND to limit searches on Informed Health, and no search results when we used quotation marks (e.g. “back pain”). It was possible to use this logic on the other two websites