Wednesday, the National Guideline Clearinghouse will go dark. On its website, www.guideline.gov, this announcement is stark:
"TAKE NOTICE: This Web site, AHRQ’s National Guideline Clearinghouse, will not be available after July 16, 2018." Federal funding through AHRQ will no longer be available to support the NGC as of that date.
Created in 1998 in the Agency for Healthcare Research and Quality (AHRQ) "to provide physicians and other health care professionals, health care providers, health plans, integrated delivery systems, purchasers and others an accessible mechanism for obtaining objective, detailed information on clinical practice guidelines and to further their dissemination, implementation and use," it’s been a staple for clinicians and health services researchers for 20 years.
Clinical practice guidelines are “systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances.” (Institute of Medicine, 1990). NGC maintained 1400 guidelines in its repository based on systematic reviews from peer reviewed medical journals. Each guideline was developed and updated “under the auspices of a medical specialty association; relevant professional society; public or private organization; government agency at the Federal, State, or local level; or healthcare organization or plan.”
NGC operated as a free resource to “all interested parties” but geared itself toward physicians and health services researchers primarily. Will its shutdown be missed? It’s unlikely for two reasons:
- Physician resistance: Physicians believe medicine is both science and art. In 1999, before NGC started, a JAMA analysis concluded “guidelines published in the peer-reviewed medical literature during the past decade do not adhere well to established methodological standards. While all areas of guideline development need improvement, greatest improvement is needed in the identification, evaluation, and synthesis of the scientific evidence.” JAMA, 1999 May 26; 281(20):1900-5 That suspicion remains strong among physicians. Clinical guidelines, they opine, are merely a starting point. Efforts by insurers and regulators to measure physician adherence to guidelines has always met resistance. Transparency about diagnostic errors rates--up to 15% today—based on non-adherence to evidence-based guidelines irritates physicians.
Physicians prefer guidelines developed by their own specialty societies based on consensus among their own and rail against guidelines developed by others when addressing medical problems they consider their domain. Thus, guidelines involving big ticket items like major surgical procedures or hard-to-treat medical problems where two or more societies compete for primary responsibility often result in tension between specialties. And even in the same local community, medical group, or hospital staff, physicians differ on their interpretation of guidelines making medical affairs play the role of referee. Usually, guidelines are used as a starting point subordinated to physician judgement whether informed, current, accurate or not.
- Alternative sources: For physicians and medical researchers, there are plenty of alternative sources: medical societies, health insurers, drug manufacturers, trade associations and others develop guidelines reflecting their particular take on prevailing evidence. In 1999, a JAMA analysis concluded “guidelines published in the peer-reviewed medical literature during the past decade do not adhere well to established methodological standards. While all areas of guideline development need improvement, greatest improvement is needed in the identification, evaluation, and synthesis of the scientific evidence.” For clinicians, Up-to-Date, PubMed, ECRI and other resources are readily accessible. And federally-funded efforts like the Cancer Moonshot and Precision Medicine Initiative assure a continued role in guideline development through other channels for the federal government.
The shutdown of the National Guideline Clearinghouse (NGC) is part of a bigger story in healthcare. Intended to provide clinicians a current, valid and reliable reference for diagnosing and treating their patients, the reality is that the market for clinical guidelines is changing faster than NGC could address:
- Explosive increase in clinical knowledge: More than 2.5 million clinical studies were published last year; there will be more next year as new research methods based on artificial intelligence, machine learning and predictive analytics are deployed by researchers. It took 50 years for medical knowledge to double in 1950; only 7 years by 1980; and in 2010, 3.5 years. In 2020 it is projected to be 0.2 years—just 73 days. Students who graduate in 2020 will experience four doublings in knowledge. What was learned in the first 3 years of medical school will be just 6% of what is known at the end of the decade from 2010 to 2020. In response, organizations are using software like AlphaGo, advanced analytic tools like CRISPR-Cas9, and para-medical professionals to sort thru the burgeoning body of clinical knowledge. The goal: to reduce the time it takes to bring evidence to practice. The 11-17-year gap between basic research and actual practice is harmful to patients who are victims of neglect in many medical disciplines.
- Expanding market for clinical guidance: NGC focused on guidelines for providers primarily, but the market for clinical guidelines is bigger. Employers, consumers and insurers use clinical guidelines to understand what works and why. They compare providers that adhere from those that do not, and calculate appropriate and inappropriate variation, measure unnecessary care and diagnostic error and more. They are developing guidelines that incorporate more than physical signs and symptoms recognizing that 60% of premature deaths and the majority of avoidable costs in healthcare are the result of social determinants. Non-providers take an approach to guideline development that builds on efforts by NGC and others adding social and behavioral considerations to biologic indicators. Like providers, they aspire to reduce diagnostic error which impacts one in seven patient encounters. But they are design guidelines that anticipate a larger role for patients (consumers) in decision-making and adherence. Notably, on its official website, the list of NGC users does not include patients/consumers: it’s focus was elsewhere.
- Heightened sensitivity to commercial influence in U.S. healthcare: NGC was no stranger to commercial pressure: healthcare is big business for investors and lenders seeking a return. Early in its history, NGC was challenged by ophthalmologists who differed with its guidelines for cataract surgery. Differences about clinical approaches to adult depression, hip replacement, heart disease, Alzheimer’s, obesity and other maladies spark companies to exert their influence in the guideline development process so their drugs or devices are acceptable. The announcement of the shutdown by the Department of Health and Human Services implies that the private sector is likely to play a bigger role in guideline development.
In the administration’s announcement June 18 that it was shuttering NGC, federal officials said "AHRQ is receiving expressions of interest from stakeholders interested in carrying on the NGC's work. It is not clear at this time, however, when or if NGC (or something like NGC) will be online again."
It's anyone’s guess what might happen to NGC, but its shutdown is unlikely to diminish the significant and growing role clinical guidelines play in our practices and policies. It is clear the spotlight will intensify on adherence to evidence-based practices (guidelines) by hospitals and physicians and on coverage and denials by insurers and employers. It’s obvious the evidence supporting the efficacy and effectiveness of prescription drugs and over-the counter therapeutics will garner heightened attention. Industry watchers will link the $28 billion investment in clinical decision support and digital health to guideline integration and speculate on what role consumers might play in their development and use.
So, in my view, the shutdown of NGC is not a cause for concern. Hopefully its successor will further the democratization of clinical knowledge across our system beyond providers and clinical researchers.
P.S. I played golf in Scotland last week. Each day, I queried my caddy about his view of American healthcare vs. the Scottish model (NHS Scotland). My take: in the working class they represent, their system is working well. They pay 12% of their wages for “health and social care” and everything is covered. 9% of the population use private insurance and providers for their care; the rest use the government-run program. They do not worry about how much it costs, how their 14 Regional Boards appropriate resources whether it’s appropriate per the guidelines or not. They know little about the U.S. system but suspect it’s more complicated and expensive.
Reflection: Polls show Scots are more satisfied with their system than U.S. citizens with ours but neither group knows much about how their system works and little about alternative systems. Healthcare consumes 43% of the Scot’s federal budget vs. 29% in the U.S. but for users in both countries, opinions boil down to their experiences with services they’ve used and how much they paid. Simple.