There are lots of websites where you can find reliable health information and trusted support. You might also come across information online that is misleading or incorrect.
Every day, thousands of people can find out-of-date, misleading and unproven information about cancer online, often without realising. This can happen on search engines like 'Dr Google', social media and AI chat tools. Sometimes people share information because they are trying to help, but it may not be accurate or based on evidence.
In this blog we will be sharing members experiences with the aim of helping you find trusted information online.
“I know I shouldn't google but I have done and now I'm really scared.“ - Community member
When you are waiting to speak to healthcare professionals about a cancer diagnosis it is often a very worrying time. Some people look for more information online, but don’t always find it helpful. You might initially feel like you will be more in control if you have lots of information to hand. But as members of the Community suggest, a wider internet search might not be the best place to start.
There are lots of people here who understand how tempting it might be to search widely online whilst waiting to speak to their care team, because they have been there themselves. Based on their own experiences, members from across all forums have offered similar advice to stay away from internet searches.
"I often advise people not to google. As you say the issue is discerning what is applicable and what is not. When people are distressed and their head is full of cotton wool then it’s so easy to click on one thing then another then another then they’re looking at survival rates etc. which are already out of date. As others have said, google is ok if you know what you’re looking for but it’s easy to get led into dark places so I encourage people to stay on here" - Community member
"Google is not very helpful for us when we really need our doctors to speak with us." - Community member
Members often reflect on how they wished they had waited to speak to cancer care professionals before searching online for information about cancer.
As these members discuss, your healthcare team will always be the best informed about your diagnosis.
"I find searching the internet very unhelpful for my mental well-being. The support I receive here (on the Community) is really helpful" - Community member
Whilst avoiding misinformation online, lots of members mention how helpful it has been for them to use the Online Community forums and speak to real people.
As this Community member mentions, everyone's experience of cancer is different. Although it can be helpful to learn from others experiences, advice shared here on the Community is not intended to replace or substitute advice and services from professional experts.
Members are encouraged to seek clinical information and support from their healthcare team, first and foremost. When looking for further information, you can find lots of general expert advice from Macmillan, other charities and trusted organisations.
Lots of members will recommend that you look at the Macmillan Cancer Support website for information and support. They may also suggest additional support from charities that may specialise in your cancer type. You can also find trusted information and support from government and NHS websites.
"...it is better to get get information from trusted sites like Prostate Cancer UK or Macmillan rather than Dr Google." - Community member
Macmillan's pages on cancer misinformation explains how AI tools and search summaries can be helpful, but they do not always get things right.
AI tools and search summaries may:
If you use AI tools and search summaries:
We explored the Community's use of AI and search summaries in our recent blog "AI is a really useful tool if used correctly."
"I have read so much conflicting materials on Dr Google about the taking of probiotics and vitamin supplements whilst on chemo can anyone provide me with a link to some trustworthy sources or does anyone have any experience?" - Community member
Many of you will have found information about alternative therapies online.
Macmillan has trusted information and support when you are looking to find out more about:
- how to check whether cancer information is reliable
- what to look out for in misleading or confusing claims
- where to find clear, trusted information you can rely on
Understanding cancer misinformation - Find out why accurate cancer information matters and get easy tips to check health facts. All Macmillan content is PIF TICK certified and reviewed by experts.
Finding reliable health information online - Learn how to check sources and spot untrustworthy AI-generated content.
BBC One Panorama: Cancer Conspiracy Theories - Following BBC Panorama's investigation into cancer misinformation, we answer your questions about finding reliable support.
How do you find cancer information? Any thoughts on the subjects covered in this blog? Please do share in the comments below.
