A social media post, a news headline, or a conversation in an online patient group can shape how we understand our health. Some offer helpful insights, while others leave us unsure about what to believe. Sometimes, information sounds so convincing that we accept it as true—especially when it comes from someone we trust or reflects our own experiences. But even information that feels right can be inaccurate or misleading.
For people who are immunocompromised, there is already a lot to consider when it comes to health – from managing treatments and appointments to reducing the risk of infection. Sorting through inaccurate or conflicting advice adds another challenge.
Learning to recognize the warning signs of misinformation and knowing where to find trusted resources can help you feel more confident in the information you use to make decisions about your care.
Recognize the warning signs
Misleading health information is not always easy to spot. It can look professional and may be shared by someone you trust. Take a closer look when content:
- Promises a miracle cure or guaranteed results. Be wary of claims that a treatment works for everyone or offers a quick fix.
- Uses dramatic language to pressure you. Content that urges you to act immediately without explaining the evidence may be misleading.
- Makes claims without clear sources. Health claims should be backed by research or other credible evidence.
- Presents advertising as education. An advertisement can look like unbiased health advice. Funding or sponsorship does not necessarily make the information inaccurate, but it should be clearly stated so readers know who is supporting the content.
“Science sources and some media can be trusted, although these days it is important to ask who owns the media. And with scientific sources one wants to know if the journal is peer reviewed and reputable. Be wary of things that sound too good to be true or that are presented as ‘doctors don’t want you to know this,’” says Dr. Lorna Gillen, a Canadian general practitioner.
It’s also important to be cautious of information when one person’s experience is presented as proof that a treatment will work for everyone. While patient stories offer valuable insights into navigating care, what worked for someone else may not apply to your individual health needs.
This is where research can help. For example, clinical trials study treatments in groups of people, giving a clearer picture of benefits and risks than one person’s experience alone. Some reviews bring together results from several studies to see whether the findings are consistent. Look for peer-reviewed research, which other experts have checked before publication. No study is perfect, but the quality of the research and the findings across studies can help you judge whether a claim is trustworthy.
Find health information you can trust
Dr. Gillen recommends starting with government websites, established medical institutions, and recognized health charities. Examples include Mayo Clinic, Cleveland Clinic, Asthma Canada, or Lupus Canada.
When reviewing a resource, look for:
- Relevant expertise: An author or medical reviewer with qualifications related to the topic.
- Balanced explanations: Clear information about benefits, risks, and what is still uncertain.
- A review date: Check when the content was last updated, as recommendations can change.
Apply the same checks to advice shared on social media. A large following does not make someone a health expert, so check the person’s qualifications and compare their claims with trusted sources.
If you are unsure where to start, ask your healthcare provider to recommend resources that reflect your individual health needs.
When online information conflicts with your healthcare provider’s advice
If you find online advice that conflicts with your healthcare provider’s recommendations, bring the link, article, or screenshot to your next appointment to discuss it together. Share what questions or concerns you have so they can help assess the information and explain why their advice may differ.
“One thing I think patients need to be aware of is that many factors go into creating a medical plan – the diagnosis, impact of other treatments, illnesses, cardiovascular, kidney, and liver function to name a few. If you think that a particular treatment or test will be helpful for you, discuss it with a healthcare provider. It’s important to understand that even if something is true, it may not be appropriate for you,” says Dr. Gillen.
It’s always important to discuss potential changes with your care team before stopping or changing a medication, starting a supplement, or delaying recommended care based on information you’ve seen online. And, if you still have concerns after speaking with a healthcare provider, ask for another opinion. These conversations can help you better understand your options and feel more confident in your care.
Access trusted resources, shaped by lived experience
We understand how important it is for our community to have access to trustworthy, relevant health information. That’s why we develop educational resources in partnership with healthcare providers and people with lived experience, guided by the questions and priorities that matter to immunocompromised people.
Explore our educational resources for information to help you better understand your health and prepare for conversations with your healthcare provider. You can also visit our member websites for trusted information related to specific health conditions.