Impact of US policy on information retrieval: options for the worst-case scenario

In Germany, information retrieval relies heavily on freely accessible medical information services from the United States. Currently, there are no comparable German, European or international alternatives that are freely accessible. The current US administration has significantly changed science policy in the United States, which could also have far-reaching consequences for health research in Germany and Europe. Due to financial and staffing cutbacks within the US Department of Health and Human Services (HHS), particularly within the National Institutes of Health (NIH) and the Food and Drug Administration (FDA), it is possible that previously free information services will either become fee-based or no longer be available. The most important sources of information at risk of an outage are the bibliographic database PubMed (MEDLINE) and the study registry ClinicalTrials.gov.

PubMed (MEDLINE) is operated by the National Library of Medicine. According to the paper “Impact of US policy on information retrieval” by IQWiG, the G-BA and Cochrane Germany, its archive would remain accessible via other sources in the event of an outage, so the resulting gap would only appear slowly. However, other bibliographic databases or their combination cannot completely replace the content of PubMed (MEDLINE). Currently, a combination of medical bibliographic databases, such as Embase (fee-based) and the Crossref data pool (e.g., via the “Lens” search interface), would be a partly fee-based approach that is more resource-intensive. Siw Waffenschmidt, Head of IQWiG's Information Management Department, notes: “Despite these limitations, in combination with other databases, they are currently the only way to depict the MEDLINE data pool as completely as possible.”

ClinicalTrials.gov is the US registry for the registration of clinical trials and the reporting of their results. According to the above paper, its archive will remain accessible via the WHO ICTRP search portal. However, the portal’s entries are only an aggregate of the ClinicalTrials.gov entries. Information on study results and the documents stored in the registry is completely missing. Waffenschmidt further notes: “In future, a comparable registration of studies could be carried out via national study registries such as the German Clinical Trial Registry (DRKS) or an international study registry (ISRCTN).”

IQWiG Director Thomas Kaiser asks: “What would happen if PubMed and ClinicalTrials.gov, our most important sources of information when compiling evidence syntheses, were no longer available? This key question was instrumental in the development of the present paper. We want to be prepared for the worst-case scenario and have a Plan B ready if necessary. We also want to make the results of our work on this topic available to the scientific community. Of course, we all hope that a worst-case scenario will not occur.”