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coalition for responsible healthcare guidelines

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

the health of all canadians is being negatively impacted by out-of-date and inaccurate guidelines which not only put lives at risk, but also create inequitable access to care.

by coalition for responsible healthcare guidelines

published apr 13, 2024

last updated may 06, 2024

11 minute read

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11 minute read

join the conversation

the lives of canadians depend on current, evidence-based screening guidelines. getty

the coalition for responsible healthcare guidelines is a group of concerned healthcare professionals, researchers, and patient representatives. its mission is to advocate for policies based on scientific research and practices that prioritize the well-being of canadians and fair access to healthcare services while promoting reform of the national healthcare guidelines in canada.

why we formed

multiple medical specialists across different fields of medicine are concerned about the methods and processes used by the canadian task force on preventive health care (task force), which result in guidelines that are inaccurate and outdated. the guidelines frequently contradict the recommendations of national and international level topic experts.

the task force guidelines are used by provinces and primary care providers (family doctors and nurse practitioners) to guide decisions on the screening tests that canadians receive.

out-of-date guidelines that are flawed not only risk lives but also create unequal access to care.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?

the coalition for responsible healthcare guidelines covers the following areas:

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

the task force’s 2013 guideline does not recommend hpv screening.

while gynecology experts recommended human papillomavirus (hpv) screening in 2013, the task force recommended against screening for hpv in its 2013 publication. this guideline has not been revised as of early 2024.

canada is now many years behind other countries. australia, the netherlands and the u.k. began hpv screening as early as 2017. while australia is on the way to becoming the first country in the world to eradicate cervical cancer through hpv screening and vaccination, canada does not yet have a national guideline recommending hpv screening. a few provinces have started to plan hpv screening programs, ignoring the task force’s guidelines. an update for the guideline is scheduled for 2025, but when it is published, it will likely be another year or two before provinces start to roll out screening en masse. canada will be nearly a full decade behind other countries. during these years of delay, hundreds of canadian women per year continue to develop avoidable cervical cancer.

“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

in 2014, the task force guideline recommended against psa screening but the task force did not include any clinician or scientist with a background in prostate cancer.

“prostate cancer is the most common cancer diagnosed in canadian men, and sadly the 3rd leading cause of death. screening has been proven to significantly reduce mortality.

the task force’s recommendation against screening is outdated, overly simplistic, and goes against other guidelines…

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

since 2011, the task force has not recommended screening women aged 40 to 49.

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.

in may 2023, the united states preventive services task force draft guideline recommended screening women starting at age 40. breast cancer experts in canada have recommended this since the 1990s.

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”

the canadian cancer society removed their endorsement of the task force breast cancer screening guideline in late 2022. on march 27th, 2024, the nurse practitioner association of canada withdrew their endorsement as well.

“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

the task force recommends against vision screening.

ophthalmologists did not agree with the task force impaired vision screening guideline in 2018. they have since noted a significant decline in vision screening in the ontario population since routine eye exams have not been funded for those aged 20 to 64.

“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

the task force recommends against universal birth cohort (1945-75) screening for hcv.

hepatologists (liver specialists) recommend screening for hepatitis c in those born between 1945 and 1975 as well as anyone with risk factors. screening ‘baby boomers’ is recommended because ~70% of cases of hepatitis c occur in people born in this era. hepatitis c leads to liver disease, including cirrhosis and liver cancer. the task force recommended screening only for people known to be at high risk. unfortunately, risk factors are hard to identify and people may not acknowledge them. with risk-based screening, over a third of people living with hcv go undiagnosed, with some patients progressing to late-stage disease and needing expensive care, like liver transplants. if hepatitis c is found before people have advanced liver disease, hepatitis c can be cured, completely eliminating the risk of liver failure and liver cancer. the centers for disease control and prevention in the us recommends screening all adults over the age of 18 for hepatitis c..

“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 task force makes a “weak” recommendation with limited screening.

canada’s lung cancer screening guideline recommends high risk patients undergo screening, from age 55 to 74 annually for three consecutive times. this is illogical and dangerous, particularly when lung cancer peaks in the mid-70s. there is no consideration of women and indigenous peoples who have lung cancer smoking less and at a younger age.

“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

the task force guideline published in 2022 recommends against the global gold standard screening tool for depression during and after pregnancy.

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

across all of the specialties listed above, one theme is consistent. canadians deserve appropriate early disease detection. they have the right to decide if screening and early detection are important to them. the way to achieve that is to ensure that primary care providers and patients are provided with current, safe and clear screening guidelines, supported by the newest research and data.

our recommendations

the coalition for responsible healthcare guidelines recommends the task force be restructured and existing guidelines corrected, overall processes be revamped, and a renewed commitment be made to the philosophy behind these guidelines.

review overall processes and philosophy

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.
acknowledge conflicts of interest but prioritize the importance of expertise over concerns about bias.
acknowledge that the selection of evidence, voting panel members, and various committees should reflect canada’s diverse populations.
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.
ensure full transparency in publicly funded science, conducted without non-disclosure agreements (ndas). audit panel members’ satisfaction with the process.
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. 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. 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+.

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we need your help. an update to the breast cancer screening guidelines is coming out this spring, and while the federal government committed to better breast screening guidelines, we believe this commitment will not be fulfilled.

many women are suffering and dying needlessly because they are not getting the screening they need. please take a minute to add your name and postal code to this pre-written letter to the health minister, and share with your networks. if we don’t speak up now, we may face a national travesty and no recourse for the next seven years.

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