The Canadian Medical Association has published suggestions to help patients avoid inadvertently sharing incorrect information, an urgent issue considering 62 per cent of Canadians were exposed to health misinformation in 2025, according to its tracking study.
Medical misinformation has serious and measurable consequences for patients (reduced willingness to access proven treatments and increases in anxiety related disorders) and for society (resistance to public health measures and amplification of political discord).
However, what happens when patients deliberately share incorrect information? There are legal remedies when patient-initiated misinformation (PIM) is malicious, such as a fraudulent go-fund me campaign. But how do we combat PIM that is not intended to defraud, but rather motivated by patient beliefs that (although based on lived experience) are demonstrably incorrect? It is these cases of PIM that we focus on here – situations in which patients propagate information they truly believe in with no intent to mislead the public, but where real harms can nevertheless result.
Why might patients propagate misinformation?
In some cases, patient or caregiver lived experiences around a positive outcome may simply reflect a placebo effect, which can result in symptom improvement in 50 per cent or more patients. For example, parents or teachers who are asked to evaluate the behaviour of a child with attention deficit hyperactivity disorder (ADHD) give more favourable ratings if they think the patient is on medication for ADHD. Not only are caregivers more likely to attribute positive changes to the medication/placebo, they are also more likely to attribute negative changes or side effects to unrelated factors.
Timing can also influence patient beliefs in the form of “post hoc ergo propter hoc” (i.e., after this, therefore because of this). One common example is patients who attribute resolution of a viral illness to a course of antibiotics simply because the antibiotics were started in the timeline in which the patient was going to improve spontaneously.
How does the risk of PIM differ in patients with rare diseases?
The weighting of lived experience is higher in patients with rare diseases, in part because the lack of knowledge around rare conditions forces patients and families to assume the role of educating health-care providers about their condition. Data on the natural history of rare diseases are often limited, complicating the interpretation of individual patient responses to therapies. However, the fact that these patients have a rare disease does not impact their susceptibility to situations such as placebo effects that can lead to incorrect conclusions.
Delays in diagnosis are common in rare diseases and reduce trust in health-care providers, which can push patients and families toward non-peer reviewed sources of information including social media. Delayed diagnosis might also mean that the patient has advanced beyond the stage where they are eligible for therapy, which could increase the likelihood that the patient tries to advocate for such treatment in the media.
Patient advocacy groups (PAGs) are common sources of disease and treatment related information. The relationship between patients and PAGs differs in the rare disease space, where PAGs may help with targeted advocacy, speaking to government and media about a specific patient. PAGs often receive grants from pharmaceutical companies. PAGs for common diseases can receive funding from multiple different companies making many different drugs whereas in rare diseases, there may be only one company making a drug for that disease, which could impact the ability of the PAG to pursue independent objectives. Indeed, as discussed in Health Advocacy Inc., partnership with pharmaceutical companies has caused PAG roles to shift from grassroots advocacy toward lobbying. These risks of significant conflicts of interest involving PAG are not well known by the public; a recent Canadian Medical Association survey suggested that patient-led organizations were trusted even more than academic researchers to provide accurate information.
What are the consequences of PIM for patients with rare diseases and the public?
Canadians want to provide drugs that work to the people who can benefit but we should not be providing drugs to people who cannot benefit. Many drugs for rare diseases have the potential for significant side effects such as liver failure, brain infection or acute leukemia. The risk of these severe side effects may be acceptable for patients who are at a stage in which the drug may help but these risks are not justified for patients at more advanced stages where there is no evidence the therapy will help them.
For the public, one consequence of medical misinformation is misallocation of resources and this is magnified with rare diseases. There are thousands of rare diseases so collectively they are common, impacting more than one in 12 Canadians. Cost for therapies is high, with multiple therapies costing $500,000 or more per year per patient. Canadian spending on drugs for rare diseases increased by more than 11-fold between 2011 and 2020. This growth rate far outpaced increases in total outpatient drug budgets (5-7 per cent per year), resulting in a net shift of available resources from paying for drugs for common diseases to paying for drugs for rare diseases.
Why is it more difficult to combat PIM around rare diseases?
For common diseases like viral infections or cancer, many people have lived experience as a framework that might be more resistant to misinformation. However, most Canadians have never even heard of any given rare disease and, because Canadians trust their neighbours more than journalists or government leaders when it comes to innovations, testimonials from patients carry significant weight.
About 80 per cent of Canadians continue to trust physicians to provide accurate information. However, privacy concerns mean physicians often are not able to speak out to correct PIM in rare diseases. For rare diseases (including some with recent media attention), there may be only a small number of physicians with experience in the condition. Often, those physicians have been involved in some way with the care, resulting in a situation where no physician with relevant expertise can correct PIM without compromising patient privacy.
What can we do to combat the rise of PIM?
Fortunately, Canadians still have considerable trust in agencies such as Health Canada and other public health organizations. One step to combat PIM would be to ensure these agencies have both the mandate and the responsibility to speak publicly. Importantly, such trusted health agencies should not be brought in as a last resort but rather should be monitoring mainstream media and speaking proactively when misinformation seems to be spreading. Unfortunately, this simple intervention does not occur. In one recent high-profile case, Canada’s Drug Agency (CDA) remained silent for several months until it was pressured by the province to comment, leading one reporter to suggest the involvement of the CDA was “passing the buck.”
PAGs are an important source of guidance for the drug approval process but we need PAGs to function as advocates for the patients, not for the drug manufacturers. Sometimes these two goals will overlap, but not always. Pharmaceutical funding of PAGs provides helpful resources for patients and families; we do not mean to imply that this funding is not altruistic nor that it should be stopped. However, as the line is blurred between PAGs and lobbyists in the area of rare diseases, we recommend that, at a minimum, all PAGs should fully disclose sources of funding to allow members of the media or public to identify if a PAG advocating for a drug has a conflict of interest. A recent review concluded that information about conflicts of interest between PAGs and industry was “incomplete, inconsistent, and unreliable.”
An even better solution would be to put PAGs at arm’s length from drug companies by establishing a federal fund to handle money donated by pharmaceutical companies to support patient advocacy. As a “carrot” to attract PAGs and manufacturers, the federal government could provide a small degree of supplemental funding (e.g., five per cent of the total). A “stick” may also be needed, and we suggest that at a minimum, PAGs that choose to take funds directly from pharmaceutical companies should not be eligible to provide input to agencies such as Health Canada or the CDA.
Having more transparency around conflicts of interest will not help if decision makers don’t adhere to strict conflict of interest policies when engaging stakeholders. Unfortunately, recent examples have shown that politicians may sacrifice such policies for political expediency, behaviour which should be addressed at the ballot box. Politicians should strive for increased transparency of the process of decision making around rare diseases – both who is involved and what factors are considered – to bolster public confidence and provide the public a wider lens through which to view claims made by patients in the media.
Final word
It is challenging for the public to sift through what is “true” and what is “false” as perspectives matter and the public needs to hear all sides. While patients have every incentive to “try their case” through the media, the situation is only worsened when trusted agencies do not speak out to correct PIM and when politicians are influenced by those with conflicts of interest which damages public trust. PIM has real harms – government should take heed to mitigate these so that scarce resources can be used in a manner to meet the most need overall.
