The advent of the internet has been of considerable benefit to rare disease patient communities, including the Dravet syndrome (DS) community. It has given patient families the opportunity to easily connect; to find out about the latest in research, treatments, and clinical trials; and to locate medical specialists who are familiar with their disease.
A big problem with online medical information is that a little knowledge — especially if it’s wrong — can be quite dangerous. As George Bernard Shaw said, Beware of false knowledge; it is more dangerous than ignorance. There are no rules that govern the quality of the information that is provided online or on social media sites such as Facebook, Twitter, and Instagram. Sources should be given some scrutiny and it is important to use good judgement and common sense. Remember that just because a post is from a friend or colleague it does not necessarily mean it’s true or scientifically accurate.
Before trusting information you find online or on social media, there are some things you should take into consideration. For instance, can you clearly see who owns the website and updates the content? Typically this information will be easy to find, often in the “About Us” section of the site. Sometimes the website address is also helpful. For instance, addresses with .gov identify a US government agency; .edu identifies educational institutions; .org identifies nonprofit organizations – such as Dravet Syndrome Foundation (DSF); and .com identifies commercial websites.
Once you understand who owns the website and is responsible for its content, you will have a better insight into the purpose of the site. You want sites associated with trusted institutions or organizations that have been around for awhile and have a proven track record of reliability and integrity. Look for websites that specialize in the kind of information you\’re seeking. For instance, if you go to the DSF website it is clear that the primary intent is to supply current and accurate information on DS and to keep our community up-to-date on research, advocacy programs, and educational events. There are also useful sites that are run by reputable pharmaceutical companies to give back to the communities that they serve by offering lists of resources, articles that are helpful for patients and caregivers, and/or medical information that is reviewed by medical specialists. We have listed trusted websites of this sort on our website under Resources & Links.
However, there are a number of sites that are only looking to profit from the patient community with no regard for the patient journey and patient safety. The articles they feature are often written by someone with no medical background, let alone an understanding of the disease they are writing about. Often, their primary goal is to either sell a product or to collect patient information they can sell and profit from. They don’t take the time to assure they are distributing current and accurate information and may unnecessarily cause fear or distress in the community because they publish inaccurate information. If the website has not affiliated itself with the patient community in any way – for instance, establishing a relationship with patient organizations and linking to one another on their respective websites – be wary of their intent and the accuracy of the information they share. Check your sources. If the information seems too good to be true, search for additional information to back up what you’ve read in order to figure out if an article is reliable.
When choosing what medical websites to trust in order to assure you are gathering reliable information, consider:
- Why was the site created? Is the purpose of the site to inform, or is it trying to sell a product?
- Does the website or article offer an unbelievable solution or miracle cure?
- Is it easy to understand who hosts the website and their mission?
- Does the website clearly state a privacy policy? Be cautious when a site you are not familiar with asks you to sign up for updates and/or asks for personal information.
- Is the owner of the website a trustworthy source such as a federal agency, medical institution, or nonprofit organization? If not, are the articles written by a healthcare professional who is an expert in that field? (If you are not sure, Google the author’s credentials).
- When was the information written or last updated?
It is so important to use caution to keep yourself and your family safe. No information found online should ever replace speaking with your doctor before making any changes to a treatment plan.
