There’s always a new report hyping one type of health discovery or another. The results usually sound promising, or else they wouldn’t be newsworthy, but can you really believe everything you read on the Internet? Another case of caveat emptor or let the buyer beware—even if the information is free!
In some cases, these reports herald real advances that redefine what we know about a disease. But too often, the findings we hear about from the media come from preliminary studies, conducted with small numbers of people, that haven’t been verified by other researchers. Yet if you or someone you love is suffering from a rare, serious, or hard-to-treat disorder, these reports offer a glimmer of hope for the future.
If you’re struggling with schizophrenia, you are just as likely to be bombarded with dubious information as you would for any other medical condition. While scientists have learned a vast amount of information about diseases of the brain, including major mental disorders, much more still remains to be learned. Research is generally a slow, incremental process, where one scientist’s finding builds upon another’s. Additionally, there are often long lapses between the time research is conducted in a laboratory and the time findings are implemented in clinical practice.
In the best of all worlds, through continuing education, staff development, supervision, and staying on top of relevant resources, treatment professionals would keep abreast of all the research developments in the field that may prove beneficial for their patients’ care. But that isn’t always the case. So it falls upon service recipients and family members to improve their own “mental health literacy” and stay informed so that they can ask the right questions to obtain the most effective treatments and care.
Fortunately, rapid advances in technology have enabled anyone with access to a computer or to a library to perform information searches on their own. Who among us hasn’t succumbed to the temptation of turning to the Internet for self-diagnosis or to second-guess a doctor for a condition as innocuous as a hangnail or something as serious as an inoperable cancer?
Web sites, user groups, wikis, and social networking sites (like Facebook, MySpace, LinkedIn and Twitter) can all provide useful and interesting information (as well as distraction) but embarking on the information highway requires discretion, judgment and caution. Here are some tips and things to think about from our book, Schizophrenia for Dummies, which may be useful in guiding you towards accurate and unbiased information and evaluating what you read:
Be critical of what you read
- Anyone can say anything on the Internet
- You do not always know who has posted the information
- There is no assurance of the accuracy or quality of the information you see
- It may be difficult, if not impossible, to differentiate fact from opinion
Consider the source of all information
- Try to stick with sites sponsored by reputable organizations. The URL can often help you identify the source of the information (.edu, .gov, .com, .org, .US, etc.).
- Be wary of commercial sites that are selling products
- Examine the references at the end of an article. Try to determine the credibility of the author or editor of the information by looking at their credentials and affiliation
- Find out the source of the information you’re reading. Was it derived from a clinical trial, experience, or is it simply an opinion?
- When possible, try to utilize sites that are grounded in evidence-based medicine, which is based on solid research
- Compare information on the same topic from different sites to see if they provide similar advice
- Be especially cautious about testimonials you find on bulletin boards or in chat rooms. More often than not, they represent subjective opinions, rather than facts based on medical research
Make sure information is current
- Every major page of a web site should include the date that it was written or reviewed.
- Whenever possible, rely only on material that includes a date. On some sites, no one verifies whether information is still accurate or whether it became obsolete long ago
Make sure the arrangement of material on the site is user-friendly
- There are many, many sites to choose from: so be sure to use those that are easy to read and navigate.
- Don’t waste your time trying to find information embedded in poorly designed web sites
Remember that the Internet cannot substitute for medical advice
- Given all the caveats discussed above, always be judicious in your use of the Internet as a source of definitive information concerning mental health issues.
- By exercising appropriate caution, the knowledge you get from the web can help you become more “mental health literate,” help you learn what questions to ask, and enable you to better communicate with professionals
Be cautious about sharing private information over the Internet; you can’t be sure that information you divulge will remain private
- Most times, people with schizophrenia or their families are seeking information from the Internet. But there may be some instances where you will decide to voluntarily offer information on-line. Before you fill out any forms or reveal any information about yourself or your family, make sure you review the site’s “privacy policy”
- When you post messages in chat rooms or on bulletin boards, consider using a pseudonym.
Librarians, either at your local library or at a university health sciences library, can also be invaluable in pointing you in the right direction and helping you perform searches for specific information. If you’re not sure about the credibility of something you are reading or its appropriateness to your condition, don’t be afraid to discuss it with your doctor or another treatment professional. Mental health literacy is everyone’s responsibility, and good professionals understand that patients and families need to help direct their own healthcare and be their own advocates.
Drs. Levine are the co-authors of Schizophrenia for Dummies (Wiley). Their book also provides a list of credible web sites for people interested in schizophrenia.
