A federal database that compiled the best medical guidelines out there, shut down its online database due to a lack of funds from the Trump administration and Congress.
What happened: A federal database that compiled the best medical guidelines out there, the National Guideline Clearinghouse (NGC), shut down its online database due to a lack of funds from the Trump administration and Congress. The results were free to access, helped doctors answer almost any medical question, and was considered as the most dependable repository of its kind in the world.
Why it matters: The NGC was created in 1998 to link the practice of medicine with the best available science. The website played an important role in providing high quality scientific information and it could be relied upon to deliver impartial, well-vetted, and trustworthy recommendations. While it is true that not all doctors or medical practitioners used the site, there is a real possibility that the loss of the NGC will lead doctors and other medical practitioners to provide less evidence-based care to their patients.
Until operations ceased on July 16, 2018, the National Guideline Clearinghouse (NGC) had been operating for 20 years and was considered the go-to resource for finding and understanding science-based medical guidelines. NGC was run by a branch of the Department of Health and Human Services (HHS) called the Agency for Healthcare Research and Quality (AHRQ). The website housed more than 4,000 clinical practice guidelines and received an average of 200,000 visitors per month. Most of the visitors were from educational institutions – like medical centers, nursing schools, public health schools and pharmacy schools – along with users from government, Veterans Affairs facilities, military hospitals and health systems and payers.
The AHRQ cannot keep the site online in a static, not-updated form because of intellectual property rules. Therefore, while the information continues to exist in disparate corners of the internet, it is now much more difficult for medical practitioners to track down the guidelines, to compare across guidelines, and to vet the guidelines for their authenticity and accuracy.
The NGC had a reputation of compiling valuable and well-sourced guideline summaries that were easily searchable. The website pulled in guidelines from hundreds of medical institutions, conducted extensive research to rate the strength and the quality of the scientific evidence for each recommendation, and starting in 2017 the NGC began to evaluate the degree of trustworthiness of each guideline using criteria developed by the National Academy of Sciences.
The costs to run the website amounted to $1.2 million per year, which, as the New York Times puts it, is roughly the same amount of money as the travel budget of former HHS Secretary, Tom Price’s, in his 7 months in office. NGC and its parent agency, AHRQ, have faced numerous threats over the years, but in 2017, the Trump administration proposed eliminating the independent status of AHRQ by folding this agency into the National Institute of Health (NIH). While Congress rejected this measure and gave the agency a slight increase in funds, the contract to support and fund the NGC was not reinstated. The lack of Congressional-appropriated funds and the deep budget woes of the AHRQ was what led AHRQ officials to shut down the NGC.
Professional medical societies have protested the closing of the NGC. For instance, the Council of Medical Specialty Societies sent a letter to the Trump administration in June to try and stop the website from shutting down. Because of these protests, the non-profit that developed and maintained NGC since its inception, the ECRI Institute, announced that they are planning to launch an interim online database sometime in the fall of 2018. However, the new website will require everyone but the guideline developers to pay money to access the site.
While there are current attempts by health practitioners to keep the NGC alive, the loss of a free, highly-respected online federal database that had the ability to sort out weakly supported research from high quality research is a huge loss to the medical community. And considering that many medical guidelines are written for commercial purposes or public relations purposes, the NGC provided a comprehensive resource to medical practitioners that was trustworthy and free of financial interests. We should want doctors and other medical practitioners to have the best resources available to make evidence-based decisions. By eliminating this crucial federal program, the quality of clinical care is bound to take a hit and it will lead doctors and medical practitioners to have less resources to treat and diagnose their patients.