Opinion

Excluding experts doesn’t make sense

Ontario is lowering the age for regular, publicly funded breast-cancer screenings to 40 from 50, mirroring a similar recommendation from the U.S. Preventive Services Task Force last May.

Now, the attention turns toward the Canadian Task Force on Preventive Health Care. Will it follow the U.S. recommendations, as it has in the past?

The ongoing discourse surrounding mammographic screening has stirred speculation about the upcoming revision of Canadian guidelines that were last updated in 2018. The process has been expedited with substantial funding of $500,000, with the revision expected this fall.

There always have been disparate opinions on breast-cancer screening, but does the current controversy stem from the scientific evidence around screening or is it about the methods employed by the task force itself?

The task force operates as an independent arm’s length body under Public Health Agency of Canada (PHAC) and deliberately excludes content experts from voting on evidence review and guideline panels. It is comprised of 15 members who predominantly have been family physicians along with some specialists and other health-care professionals, including nurses, a dietician, an occupational therapist and a chiropractor.

When I have asked patients and primary care physicians, most assume that the Canadian task force guidelines are led by content expert specialist clinicians, scientists and patients. However, this is not its methodology. Experts are not involved, save for minimal written input without dialogue for most of the existing guidelines. As the task force itself states, “Clinical and content experts do not provide input into or vote on task force recommendations.”

The sole reason the task force provides to exclude content experts from genuine involvement in guideline development is to avoid conflicts of interest. However, this assumes that content experts are seeking personal gain from the guideline outcomes. In the Canadian health-care context, this is not a valid argument. Screening activities are usually very poorly reimbursed, if at all. Blood tests, such as PSA and HCV screening, do not directly benefit specialists. Some expert recommendations, such a self-administered HPV screening rather than Pap tests, actually would decrease specialist involvement and income from screening. It is important to recognize that biases can be mitigated through well-established methods; more significantly, the nuanced understanding and expertise of content specialists cannot be disregarded or outweighed by concerns about bias.

Task force members themselves are not exempt from bias and predetermined conclusions. For example, a few days following the publication of the draft U.S. Task Force revision of its guideline, Guylène Thériault, the co-chair of the Canadian task force and chair of the current breast screening guideline panel, said “she does not see any reason to change [Canada’s] guidelines” and that “looking at the [U.S.] guidelines, we don’t see that there was anything new.”

While the longstanding contention about screening mammography may overshadow discussions about the task force, it prompts questions about development processes behind other guidelines. The fact that content experts are not pleased to be excluded is clear from excerpts from response letters and position statements from leading specialists and specialty societies, excerpted below. All refer to existing guidelines that have yet to be updated and thus currently influence Canadian health-care policy.

  • Wei-Yi Song (past-president, Canadian Psychiatric Association), issued 2019: “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.”
  • OBGYN K. Joan Murphy (Clinical lead of Ontario Cervical Screening Program) on task force recommendation against HPV screening, issued 2013: “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.”
  • Iain Murray, gastroenterologist, on behalf of the Board of Directors, Ontario Association of on colorectal screening issued 2016: “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.”
  • Pediatrician John C Leblanc on Developmental Delay screening guideline issued 2016: “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.”
  • Hepatologist Eric Yoshida (Chair of Canadian Liver Foundation Medical Advisory Committee) on HCV screening issued 2017: “This can only perpetuate Canada’s low HCV diagnosis rates leading to the late diagnosis of liver cancer, decompensated cirrhosis and extra-hepatic illnesses.”
  • Canadian Ophthalmological Society president Yvonne Buys on impaired vision screening issued 2018: “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.
  • Medical oncologist Garth Nicholas on lung cancer screening issued 2016: “The recommendation that patients should be screened annually for two years only 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.”
  • Chris De Gara, bariatric surgeon (Past President, Canadian Association of General Surgeons, Former Director of Bariatric Surgery Revision Clinic, Alberta Health Services) on adult obesity screening issued 2015 (overturned with new bariatric specialist guidelines published in CMAJ in 2020). “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.”
  • Canadian Society of Breast Imaging position statement on breast screening guidelines issued 2018: “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 40-60 per cent reduction in breast cancer mortality.”
  • Canadian Association of Radiologists position statement on breast screening issued 2018: 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)”
  • Canadian Urological Association position statement on prostate cancer screening issued 2014: “Importantly, the members of the Task Force did not include any clinician or scientist with a background in prostate cancer.
  • B.C. Reproductive Mental Health Program and Perinatal Services BC statement on pregnancy and postpartum depression screening issued 2022: “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.”

Within the existing guidelines, there are common themes of exclusion of highly qualified experts who are leaders in their fields. Specialists almost universally disagree with the guideline content in their own fields and point to an excessive emphasis on harms, inexpert understanding and handling of evidence.

The Canadian Task Force should be dismantled and rebuilt. The reconstructed version of the task force should fully include content experts as leaders and voting members, working side by side with population health experts and patient partners. It should use updated methodology, such as that proposed by internationally recognized methodologists.

Transparency and accountability must be integral to the new structure. Mandatory evaluation of population outcomes resulting from guideline recommendations is essential, ensuring a systematic assessment of the guidelines’ impacts. Timely rectification of any errors found in the guidelines is imperative to maintain accuracy and effectiveness.

Ultimately, the restructured Canadian Task Force on Preventive Health Care should emerge as a progressive expert body that Canadians can trust implicitly. Its primary goal should be to provide reliable health guidance, promoting high-quality care and responsible allocation of resources.

By addressing the shortcomings of the current system, we can cultivate a task force that serves as a beacon of forward-thinking and reliable information and promotes the well-being of the nation.

The comments section is closed.

3 Comments
  • Dr. Rob Murray [DDS retired] says:

    The insurance industry has found that if it can control medical guidelines it can control medicine. Medicine is authoritarian and hierarchical. Questions that can’t be answered are one thing but answers that can’t be questioned are quite another. Guidelines can be used by medical societies to eliminate competing ideas, limit patient preferences, ignore clinician’s skill and judgement while ignoring science that doesn’t agree with dogma. Flawed clinical practice guidelines may compromise patient care. Commercial conflicts of interest on panels that write treatment guidelines are particularly problematic, because panelists may have conflicting agendas that influence guideline recommendations. Historically, there has been no legal remedy for conflicts of interest on guidelines panels.

    The primary goal of clinical practice guidelines is to improve patient care. They are voluntary, not mandates and are meant to be coloured by physicians knowledge and skill. However patients’ interests are not directly represented on guidelines panels. Guidelines that limit patient treatment options may essentially set public policy without the benefit of public debate or the participation of significant stakeholders. When divergent treatment approaches exist and guidelines fail to acknowledge these or provide treatment options, they may deprive patients of the right to make the treatment choices that lie at the heart of autonomy. [1,2]

    A Canadian example of this is the mishandling of Lyme disease. The U.S. National Academies of Medicine uses the IDSA Lyme guidelines as a poster child of what not to do. They serve one purpose, to punish physicians that don’t follow them. The 2014 Act of Parliament required PHAC to develop a made-in-Canada set of Lyme disease guidelines and to asses the costs of the hidden ignored epidemic of Lyme in Canada. Canadians have been forced to suffer or leave the country to seek proper diagnosis and treatment at their own expense. This has happened after the long-term disability insurance industry red-flagged Lyme as being too expensive to treat and in 1994 colluded with infectious disease doctors and government officials to mislabel Lyme as a minor nuisance disease not worth further investigation. [1]

    Instead, unnamed officials at the head of PHAC ignored the Summary Report of the 3 day balanced Conference held in Ottawa in May 2016 and after 9 months without collaboration or transparency produced a status quo Framework report that could have been written a decade earlier. It was designed to convince politicians that they were in good hands and ceded authority and the $4 million arising from the Conference, without competition to a single group of status quo researchers, PHAC and public health officials, past executives of the private Association of Medical Microbiologists and Infectious Disease [AMMI] Canada. AMMI have a death grip on this disease in Canada and PHAC has indicated that it is unwilling to share power or help solve this conundrum. Dr. Howard Njoo said that health is a provincial matter and provinces are free to do as they choose.

    In the meantime PHAC will maintain control of research dollars and the Lyme tests at NML. It’s the flawed test using obsolete 1960’s technology that misses at least 1/3 of those that truly do have the disease that got us into all this trouble and it has to be done away with. AMMI doctors are only interested in the acute disease [the rash] and those that can pass their test. Once patients have been treated for 10 days they are no longer of interest and are abandoned. AMMI members owe their allegiance and take their direction from the 13,000 member private IDSA organization who were given control of Lyme and all the procedures around it by the highly conflicted CDC that acts as a quasi-government.

    Patients prioritize regaining their health while infectious disease doctors and PHAC have prioritized the preservation of the antibiotic supply.

    Medicine is a self-regulating profession, a privilege, not a right and only works if everyone is behaving altruistically. The Lyme Framework is a travesty. Canadians don’t want our healthcare system directed by the U.S. insurance industry through regulatory capture. [3]

    References:
    1.) The Infectious Diseases Society of America Lyme guidelines: a cautionary tale about the development of clinical practice guidelines, Johnson L, Stricker RB, Philos Ethics, Humanit Med 5[9] 10-06-09: https://link.springer.com/article/10.1186/1747-5341-5-9
    2.) Potential benefits, limitations, and harms of clinical guidelines, Woolf SH et al, BMJ 1999-02-20: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1114973/
    3.) Professional Self-Regulation and the Public Interest in Canada, Adams TL,
    Oasis Discussions: http://oasisdiscussions.ca/2017/01/17/pi-2/
    4.) The Situation of the Human Rights Defenders of Lyme and Relapsing Fever Borreliosis Patients, The Ad Hoc Committee for Health Equity in ICD11 Borreliosis Codes18-03-06: https://www.canlyme.com/wp-content/uploads/2018/07/Defendersreport.pdf

  • Mike Fraumeni says:

    Excellent read and recommendations. I suppose another issue is for physicians to actually follow guidelines. This study, from 2010, for example, demonstrated problems in this regard. I’m sure there are many reasons for such low adherence and I know this has also been studied extensively.

    CRC SCREENING GUIDELINE ADHERENCE LOW
    “Most doctors don’t follow practice guidelines for recommending colorectal cancer screenings, a study shows.
    The survey of nearly 1,300 primary care physicians in the United States found that only about 20% of them recommend colorectal cancer screenings tests to their patients in accordance with current practice guidelines. About 40% of the doctors followed some of the practice guidelines, while the remaining 40% ignore practice guidelines.” …
    Source: https://www.healthleadersmedia.com/strategy/crc-screening-guideline-adherence-low

  • rickk says:

    The Canadian medical experts told the government we must shut down Canadian society because of SARS-CoV2 virus was in the community – one cannot get their hair done at a salon but it was perfectly permissible to go get a bottle of vodka and a CabSav (masked of course). Canadian medical experts told the government we must all (the very young and old alike) be inoculated with a ‘vaccine’, despite the significantly increased risk to some in the Canadian population and infinitesimal risk to others. Canadian medical experts endorsed the initial inoculation against SARS-CoV2 and then conceded a ‘top up’ is required – and then a booster, and another booster – and so on. All this despite the stats showing it does not prevent acquisition of the virus nor the spread. Canadian medical experts told the government we must all wear masks to ‘curb the spread’ of the SARS-CoV2 virus in the community despite no credible evidence demonstrating any efficacy thereof. Scientific interventions, endorsed by experts, like donning the mask at the front door of the restaurant, wearing it to your table, then permitted to remove it while at your table having dinner and drinks most certainly did something. Lastly, the most formidable of the medical experts told the less formidable medical experts that they better not question the former’s scientific policies in this SARS-CoV2 crisis or they will be stricken from the register.

    Yep, excluding experts does not make sense…

Authors

Shushiela Appavoo

Contributor

Shushiela Appavoo is a General Radiologist in Edmonton. She has an interest in breast imaging and chairs the Canadian Society of Breast Imaging Patient Engagement Group.

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