AI, social media and misinformation

Searching for health information isn’t just a case of “Googling it” anymore. You might be using AI tools like ChatGPT or social media to help you find information about pancreatic cancer. In this blog, our Senior Information Manager Emily Morgan explains how to find information you can trust.

There are so many different ways to search for information now. Even when you’re using web search engines like Google, they often include AI-generated answers near the top of the page. The challenge is knowing what to trust.

Recent Ofcom research found that 4 in 10 people have been affected by misinformation. In this blog, we will share some tips to help you check whether the information you are reading is reliable.

What is misinformation?

Misinformation is information that is wrong or misleading. It can include claims about the causes of cancer, treatments or cures that are not accurate or supported by good evidence. It can make it harder for people to make informed decisions about their health and treatment.

What should I think about when using AI?

AI trawls data and the internet to look for answers. While it’s getting better at using reliable sources like the NHS or charities, it may also use inaccurate or poor quality information. It sometimes gives wrong information, and can make things up. But it’s very convincing in its responses, so it’s not obvious if something’s wrong.

Here are some things to remember when using AI. 

• AI doesn’t have feelings or understand cancer or illness. But it can be very good at reflecting back your feelings. 
• It doesn’t know your situation, worries or life experiences. 
• It may give information that’s taken out of context or misleading.  
• AI can sound confident, even when it’s wrong.  
• It may favour US websites and provide information that is not correct for the UK healthcare system. 
• It can learn over time and change how it responds to the same question. 
• Always think of AI as a tool, not a person. 

If you’re using AI to look for health information, always check the sources. Make sure they are relevant to the UK and trustworthy, such as the NHS, Pancreatic Cancer UK and Macmillan Cancer Support. These organisations base their information on the latest evidence, and involve experts to check it. You can ask AI to tell you where it got its information from. 

What should I think about when using social media?

Social media can be a great way to find accessible and engaging information. Trustworthy organisations like health charities often post information, hints and tips to help you manage your cancer. Social media can also help you connect with others. For example, our Circles community can put you in touch with others affected by pancreatic cancer through Facebook and WhatsApp groups.  

People are increasingly using search tools and chatbots on social media to search for information, rather than search engines like Google. But social media can spread misinformation. This may include false claims about cancer, “miracle cures”, deepfake videos (often with a face you trust), and unproven wellness products. According to the Patient Information Forum, 8 in 10 “cancer cures” on TikTok are fake. 

How can I keep myself safe when using AI or social media?

• Whether you are searching using AI, social media or Google, always check the source, who produced it, and whether there’s a publication date showing it’s current. 
• Don’t rely on AI to diagnose your symptoms, explain test results, make medical decisions, or help in an emergency. 
• Be cautious of dramatic claims, or posts that try to sell you something. Don’t trust responses that promise a “cure,” claim doctors are hiding treatments, or promote “natural” therapies. If something sounds too good to be true, it probably is. 
• Be aware that what worked for one person may not work for everyone. Personal experiences can be a valuable way of finding out what it’s like to have pancreatic cancer, how others cope, and feeling less alone. But they are not the same as scientific evidence.  
• If you are using AI without setting up an account, be aware that it may take any information you share with it and “learn from it” when it responds to someone else. Don’t share personal information or data with it.  

Always check information you find online with a health professional before changing how you manage your cancer. If you have questions or something is worrying you, talk to your medical team or our specialist nurses on our Support Line.  

All our information is based on evidence and checked by health professionals and our specialist nurses. This includes the information we share on social media.  

Our nurses are all pancreatic cancer specialists. You can contact them about anything to do with pancreatic cancer.   

The World Cancer Research Fund has produced this useful tool to help you assess health information you find online.