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

BACKGROUND: Information about effects of treatments based on unsystematic reviews of research evidence may be misleading. However, finding trustworthy information about the effects of treatments based on systematic reviews, which is accessible to patients and the public can be difficult. The objectives of this study were to identify and evaluate free sources of health information for patients and the public that provide information about effects of treatments based on systematic reviews. METHODS: We reviewed websites that we and our colleagues knew of, searched for government sponsored health information websites, and searched for online sources of health information that provide evidence-based information. To be included in our review, a website had to be available in English, freely accessible, and intended for patients and the public. In addition, it had to have a broad scope, not limited to specific conditions or types of treatments. It had to include a description of how the information is prepared and the description had to include a statement about using systematic reviews. We compared the included websites by searching for information about the effects of eight treatments. RESULTS: Three websites met our inclusion criteria: Cochrane Evidence, Informed Health, and PubMed Health. The first two websites produce content, whereas PubMed Health aggregated content. A fourth website that met our inclusion criteria, CureFacts, was under development. Cochrane Evidence provides plain language summaries of Cochrane Reviews (i.e. summaries that are intended for patients and the public). They are translated to several other languages. No information besides treatment effects is provided. Informed Health provides information about treatment effects together with other information for a wide range of topics. PubMed Health was discontinued in October 2018. It included a large number of systematic reviews of treatment effects with plain language summaries for Cochrane Reviews and some other reviews. None of the three websites included links to ongoing trials, and information about treatment effects was not reported consistently on any of the websites. CONCLUSION: It is possible for patients and the public to access trustworthy information about the effects of treatments using the two of the websites included in this review. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s12911-019-0772-5) contains supplementary material, which is available to authorized users.