coalition for responsible healthcare guidelines: current screening guidelines are risking lives

why we formed

out-of-date guidelines that are flawed not only risk lives  but also create unequal access to care. the task force was dismantled in 2005 and reinstated in 2009. the 15 years since have witnessed guidelines lagging behind other countries, delayed and inconsistent provincial screening practices, and worsening outcomes for canadians.

which specialties are involved?

• family medicine
• breast radiology/oncology (breast screening guideline, 2018)
• urology (prostate screening guideline, 2014)
• psychiatry/women’s health (pregnancy / postpartum depression, 2022)
• hepatology (hcv screening guideline, 2017)
• ophthalmology (impaired vision screening guideline, 2018)
• pulmonology (lung cancer screening guideline, 2016)
• gastroenterology (colorectal cancer screening guideline, 2016)
• gynecology (cervical cancer screening guideline, 2013)
• pediatrics (developmental delay screening guideline, 2016)
• patients / surviving family (impacted by current guidelines mentioned above)

experts call for better canadian screening guidelines

cervical cancer screening

“we believe that the evidence strongly supports primary hpv screening is a significant step toward both increasing the efficacy of screening and decreasing its harms.” — letter from k. joan murphy , clinical lead of ontario cervical screening program.

prostate cancer screening

canadian men deserve to have the right to decide what is important to them, and family physicians need to stop being confused by recommendations that go against logic and evidence .” —dr fred saad, urologist, past president, canadian urological association, press conference, april 15, 2024.

breast cancer screening

the task force did not monitor the outcomes of its 2011 guidelines and, unfortunately, repeated the recommendation not to screen younger women in 2018. since the 2011 canadian task force recommendation not to screen women this age, there’s been an increase in the number of advanced cancers in women in their 40s and 50s. these women need more extensive surgery, more harsh chemotherapy, and are more likely to die of their cancers. in that same period, cancer has increased in younger women .

the task force has not acknowledged that indigenous, black, asian, hispanic, and filipina women have a peak incidence of breast cancer in the 40s, whereas white women have a peak incidence in the late 50s, early 60s. black women are 40% more likely to die of breast cancer than white women. “ in 2021, …more than one-quarter [of canadian women] (26.8%) were part of a racialized group, while 23.8% were immigrants and 5.1% were indigenous.” — statistics canada publication:  “the rich diversity of women in canada”

“task force guidelines overly utilize data that is more than 30 years old. the guidelines ignore new research that incorporates the use of newer technologies and which show a 40 to 60 per cent reduction in breast cancer mortality.” — position statement from the canadian society of breast imaging

“the task force recommendation against using tomosynthesis on average risk women, cited in the guidelines as a ‘strong recommendation, no evidence’ ignores the very large body of evidence on tomosynthesis which has been summarized in 2015 by the canadian agency for drugs and technologies in health (cadth).” — position statement from the canadian association of radiologists

vision screening

“given that the authors acknowledged there was no evidence of harm associated with screening adults for impaired vision and the evidence overall for this analysis was ‘low-quality,’ we believe a recommendation of “against” screening seems to be extreme… denying this opportunity to diagnose a vision-related health care issue is misguided.” — letter from dr. yvonne m buys , past president, canadian ophthalmological society

hepatitis c screening

“this can only perpetuate canada’s low hcv diagnosis rates leading to the late diagnosis of liver cancer, decompensated cirrhosis and extra-hepatic illnesses.” — letter from dr. eric yoshida , member of the national governing board of the canadian liver foundation

lung cancer screening

“the recommendation is problematic. such a short interval of screening is practical in the context of a clinical trial with a limited time horizon, but not in routine practice.” — letter from dr. garth nicholas , medical oncologist, the ottawa hospital

perinatal depression screening

canada is going against the recommendations of essentially all other countries with guidelines for perinatal depression — including the u.s., u.k., and australia. this is hugely important because suicide is a leading cause of maternal deaths . screening for depression and helping make connections to community supports should be a priority to prevent maternal suicide, and to reduce serious mother and child harms that result from untreated depression. in june 2023, the us task force recommended depression screening of adults, including pregnant and postpartum women.

“guidelines developed by non-specialists and that are based solely on clinical trial data may oversimplify treatment and ignore clinical scenarios that require comprehensive judgment in addition to data, and may be harmful to patients.” — canadian psychiatric association, letter from dr. wei-yi song , past-president of canadian psychiatric association (cpa)

“we disagree with the task force conclusion that the evidence in support of instrument -based screening for perinatal depression is very uncertain. our position aligns with the conclusions of the us preventive services task force and american college of obstetricians and gynecologists (acog) that there is evidence in favour of screening for depression in the perinatal period.” — statement from the b.c. reproductive mental health program and perinatal services b.c.

colorectal screening

“the task force suggests that colonoscopy does harm… as the incidence of colon cancer (1:19) far outweighs risk associated with colonoscopy, we are concerned that there could be more harm done when cancers are missed by inferior tests.” — letter from dr. iain murray , gastroenterologist, the 2014-2015 head of the ontario association of gastroenterology.

pediatric developmental delay screening

“we believe that grade criteria for a strong recommendation have not been met… these facts, outlined in the statement itself, justify a ‘weak’, not a ‘strong’ recommendation.” — letter from dr. john leblanc , dalhousie university.

obesity

“to not present a balanced picture of the care available to the obese patient is a disservice and to misrepresent the evidence for bariatric surgery in patients with severe obesity is unfortunate.” — letter from dr. chris de gara, bariatric surgeon , university of alberta, past president of the canadian association of general surgeons and former director of bariatric surgery revision clinic, alberta health services

our recommendations

review overall processes and philosophy

1. understand that guidelines are not purely academic exercises. the purpose of guidelines is to preserve canadians’ health with judicious use of resources. practical understanding of the topic is needed.
2. acknowledge conflicts of interest but prioritize the importance of expertise over concerns about bias.
3. acknowledge that the selection of evidence, voting panel members, and various committees should reflect canada’s diverse populations.
4. follow population outcomes. rank guideline quality based on safety and patient outcomes above all. methodology is important and fundamental, but it is not the sole arbiter of quality.
5. ensure full transparency in publicly funded science, conducted without non-disclosure agreements (ndas). audit panel members’ satisfaction with the process.
6. identify the true costs of screening by not simply including the expenses  and resource constraints, but also identifying downstream cost savings in calculations. this should include the patient/family costs of disability related to later stage diagnosis. avoid manipulating science to facilitate budgetary considerations.

urgently remedy existing guidelines

1. 1. suspend all canadian task force on preventive health care guidelines deemed inappropriate by experts. replace them, at least on an interim basis, with expert-recommended guidelines, such as uspstf, nccn, canadian and/or american specialty society guidelines.
   2. have content experts lead the guidelines in their own fields, with methodologists playing an important supporting role. specialty societies should approve guidelines to avoid confusing and conflicting guidance.
   3. knowledge translation tools should be designed to be neutral, not biased. both relative and absolute harms and benefits should be expressed as well as risks of screening and not screening.
   4. revise guidelines regularly and promptly, particularly when there are new important studies available. content experts should alert the guideline body when there are important breakthroughs that necessitate updates.
   5. include disclosure of complementary or contradictory recommendations from other relevant guideline sources in future guideline development to ensure readers are aware of any controversies in the subject matter.

reform the task force

1. 1. restructure the task force with a robust governance and accountability structure.
   2. outcomes should be monitored and any deteriorating outcomes should be quickly addressed. content experts should lead the calls to action.
   3. involve ethicists in both the restructuring of the task force as well as the choice of topics, development of individual guidelines and outcomes measures. among other ethical practices, the precautionary principle should be a foremost consideration in guideline development.
   4. involve patient partners at every level. provide adequate training and support for patients.
   5. require full disclosure of the credentials of all panel members in all documentation, including the final published guidelines.
   6. modernize methodology using updated concepts, such as ebm+.