Trusted Voices: Understanding why people believe cancer misinformation
All health misinformation can cause harm. But cancer misinformation can carry particular risks.
A cancer diagnosis can bring fears about survival, difficult treatment choices and uncertainty about the future. People may face urgent decisions while searching for hope and reassurance. This can make claims about miracle cures or alternative treatments especially appealing.
Acting on these claims may delay effective treatment, sometimes with devastating consequences.
What can cancer misinformation teach us about responding to misleading health claims more widely?
We explore why people may believe cancer misinformation, and the impact this can have. PIF Advisory Group member, Dr Knut Schroeder GP, shares his insight on discussing misinformation with patients.
When early research becomes a misleading claim
In July, Macmillan Cancer Support published an article about ivermectin and misleading claims about its use as a cancer treatment.
Ivermectin is a medicine used to treat certain parasitic infections. Laboratory studies have explored its effects on cancer cells. However, there is no convincing clinical evidence that it benefits people with cancer.
Macmillan has seen more people asking about ivermectin in its online community.
The case raises a wider question. How can we respond to people who believe misleading health claims without dismissing their concerns?
Why do misleading claims spread?
Personal stories can be powerful, particularly when people are searching for answers about their health.
Research from World Cancer Research Fund found 13% of adults who mainly get news from social media wrongly believed certain diets could "starve" cancer. This compared with 7% of other adults.
Its Science Not Fiction campaign challenges misleading claims about cancer and nutrition. It also offers a TRUST Test to help people check health information.
Cancer Research UK has explored why personal stories can seem more convincing than scientific evidence.
For someone facing cancer, stories of recovery may offer hope. An unexpected recovery can feel more reassuring than a professional's explanation of what treatment can realistically achieve.
But the consequences of misleading information can be devastating.
Paloma Shemirani, 23, died after declining chemotherapy for non-Hodgkin lymphoma in favour of alternative treatments. Doctors estimated she had an 80% chance of recovery with chemotherapy. A coroner found her mother's influence over her treatment decisions contributed to her death.
Understanding why people believe these claims helps us respond with empathy, rather than simply correcting the facts.
'Start by getting curious'
Dr Knut Schroeder says: "As a GP, I’ve learned that misinformation usually sticks because it meets a real need, such as fear, hope, or feeling unheard. So I start by getting curious, not correcting.” He shares his advice for talking to people who have seen and might believe health misinformation they have seen:
- Get curious: Ask what drew them to the claim. Explore what they think about it, what they're concerned about, and what they expect.
- Find common ground: You usually want the same outcome, such as staying healthy and well, and avoiding harm.
- Ask permission: You can say something like "Would it help if I shared what we know?"
- Lead with facts: Give findings from reputable sources, explain their meaning, and avoid repeating myths.
- Explain the evidence: Help people understand what the evidence means and what the difference is between laboratory research and proven treatments.
- Admit uncertainty: Be clear about what we know and what we don't know, and the degree of certainty. It helps build trust.
- Play the long game: Leave the door open, invite further discussion, and point to trusted, checkable sources
Knut’s helpful advice is focused mainly around direct conversations with people who have been impacted by misinformation but there are also organisational steps that can be taken.
Respond to emerging claims
Look for common questions on helplines, social media and patient forums. Use these to identify gaps in information and decide what needs updating.
Recognise the human impact
People may need reassurance as well as facts. Marie Curie's guidance highlights the value of clear, compassionate communication and being open about uncertainty.
Test information with users
Involve patients and carers when developing information to challenge misleading claims. Check whether it answers their questions and addresses their concerns.
Help people develop critical thinking skills
Offer public sessions that help people question online health claims and decide whether information is reliable.
Show people how to check sources, look beyond headlines and understand information about risks and benefits.
Our health misinformation toolkit brings together several of our guides to help you find trusted health information. Find out more at https://piftick.org.uk/guide/health-misinformation-toolkit
We also have a collection of trusted resources in a collection created in partnership with NHS England that offers information on signs of lung, breast, prostate and bowel cancer, as well as melanoma. View the Early Signs of Cancer collection on the PIF TICK website here.