Get help Advice and information leaflets Finding trustworthy information online Contents Introduction What you can search for How to search online What to look for Warning signs Using the information Trusted sources Introduction The internet can be a great place to find out more about your health condition and get support. However, it is crucial to make sure you are looking at information you can trust. You may have heard the term ‘fake news’. When it comes to health, fake news can be incredibly serious. No-one is in charge of the internet. This means anyone can post anything online. An MHP poll in 2019 found one in five people rarely or never check the health information they read is correct. Three in ten feel they are more likely to believe a health story if it is shared by a friend on social media. This leaflet is designed to help you help find trustworthy information online. If you are unsure of anything always check with your healthcare professional. You should never make medical decisions based on online information alone. What you can search for The internet can help you to manage your condition in a number of ways. You can: Use the NHS website – www.nhs.uk– to search for and compare health services Book appointments online Find out more about your condition Search for apps to help you manage your health Find online support groups. Buying medicines online Buying medicines online can be dangerous. You should only buy medicines from registered online pharmacies. The General Pharmaceutical Council – pharmacyregulation.org – operates an internet pharmacy logo scheme. This helps you identify legitimate online pharmacies. You can search for information on your medicines online. Here are some things to remember: The dose prescribed by your doctor may be different from the patient information leaflet. Always follow instructions from your doctor or pharmacist. Medicines have two names – a generic name and a brand name. For example, ibuprofen is a generic name and Nurofen® is a brand name. Some medicines were originally developed to treat different conditions. This may make some of the information you read confusing. You can find information on your medicines at nhs.uk/medicines. How to search online Using search engines Try to narrow down your search. For example, if you are searching for diabetes, specify the type of diabetes or a specific question. Use quotation marks to search for an exact phrase. For example, “asthma support groups”. You might want to limit to UK-searches only for some information. You can do this using the ‘‘advanced search’’ option on Google. You can also add ‘‘UK’’ to the words you type into the search box. Remember the first result may not be the most relevant. Organisations can pay to have their web page listed higher in the search results. Medical journals Medical journals can be useful if you are trying to find information on a rare condition or new treatment. One of the most popular databases is PubMed – pubmed.ncbi.nlm.nih.gov. Remember journals are written for scientists and healthcare professionals so you might need to think carefully about the words you search. Journals often feature unusual cases which can give you a distorted view of your condition. Finding apps The NHS has a list of recommended apps – nhs.uk/apps-library. This is the best place to start when searching for an app to help track your symptoms or manage your condition. Several large charities have also developed their own apps. Useful resources discern.org.uk– a brief questionnaire to assess the quality of information evidence.nhs.uk– an index of evidence-based information pathways.nice.org.uk– a tool providing quick and easy access to NICE resources cochranelibrary.com– high-quality, independent evidence databases. What to look for Below are some questions to help you check the information you find online is trustworthy. Is there a date? Medical advice changes over time so make sure the information you get is up to date. Websites providing trusted health information will normally include a publication and review date. Who produced it? Knowing who produced the information can help you understand why they produced it. For example, a commercial website might be trying to sell you something. Follow any links which say ‘home’ or ‘about us’ to find out more. What is the website address? Charity and non-profit websites often end in ‘.org.uk’ or ‘.org’. Government websites end in ‘gov.uk’. Academic institutions end in ‘ac.uk’. Does it look professional? Check for spelling errors and make sure links work. Is there evidence? Two people with the same condition can have very different experiences. Is the author expressing an opinion based on their own experience? Do they have evidence to back it up? Does it include sources? If someone says they have evidence they should provide the sources to support this. Is it backed by other organisations? Check if the information is endorsed by an organisation you trust. For example, the NHS or a large charity. Warning signs False health information can be dangerous. Some websites are set up to make money or to cause controversy. Others may include information which is out of date, has been misinterpreted or is plain wrong. You should always try to find the original source. Here are some warning signs to look out for: ‘Miracle cure’ or ‘wonder drug’ These titles are designed to catch your attention. However, they often lack context which can lead to exaggeration. If it sounds too good to be true, it is! Remember ‘positive’ results are more exciting. For example, there could be ten studies saying bananas do not cause cancer and one saying they do. The positive one is more likely to attract attention. Never pay for a treatment or medicine based on claims like these. You could put your health at risk. Always speak to your doctor or pharmacist first. Small groups – big results Generally speaking, more people in a study means more reliable results. Be wary of information which claims big results from small sample sizes. ‘My friend said’ Personal stories are great for knowing other people are going through the same thing as you. But everybody responds to treatment in different ways. Just because someone has had a particular side effect or outcome does not mean you will. Remember, just because your friend shared information with you does not mean it is true. Bias Does the information seem balanced? If it is all negative or all positive the publisher might be biased. This does not mean what they say is untrue. But you should think about their reasons for publishing. Using the information Once you have found your information you need to decide what to do next. Make a note of where you found the information and print any pages you want to keep. Websites change and there is no guarantee the information will be still be there later. Talk to your doctor about the information you have found. Try not to take a huge stack of papers to your appointment. Instead, use the information to put together a list of questions to ask. See our leaflet ‘Make the most of your GP appointment’ for more advice on this. Trusted sources The Patients Association has only included organisations on this list that we believe are professional and reputable. Please note we are not responsible for the content published on these external sites. For general health information: bacp.co.uk – professional website for talking therapies healthtalk.org – information based on people’s experiences nhs.uk – A-Z of conditions and medicines nhs.uk/apps-library – apps recommended by the NHS nhs.uk/service-search – search for GPs and opticians patient.info – healthcare information written and reviewed by doctors For specific conditions: alzheimers.org.uk – dementia www.bhf.org.uk – heart disease diabetes.org.uk – diabetes macmillan.org.uk – cancer mind.org.uk – mental health conditions mstrust.org.uk – multiple sclerosis stroke.org.uk – strokes versusarthritis.org – arthritis Contact the Patients Association helpline The Patients Association offers a free national helpline providing specialist information and advice to help patients make sense of their health and social care. Patients can talk directly to trained advisers in strict confidence about any concerns, questions or general experiences they have regarding the NHS and social care systems. The helpline is open from 9.30 am to 5pm, Monday to Friday, and calls outside these times are returned as soon as possible during opening hours. If you would like to contact the helpline, please call free on 0800 345 7115, or visit the Patients Association helpline page on our website for more information.