The danger of misinformation
Desperate for help, dysautonomia patients and families often turn to the immediate information resource - the Internet. However, it is important to realize that there is no filter, editor, or censor on the World Wide Web. Excellent resources reside alongside the most dubious. Desperate for any information, patients and families are often pulled into the much muddied waters of disinformation, misinformation and/or information overload.
For most of the 20th century, dysautonomia information was in the “dark ages,” where there was little to no public information available regarding these conditions. DYNA was the first professionally certified non-profit organization for youth onset dysautonomia conditions in the world to fill this information void. More than a decade later, DYNA still remains as the only professionally certified non-profit organization for youth onset dysautonomia conditions in the world. DYNA operates with the guidance of a professional Medical Advisory Board. DYNA is medically endorsed by many of the best physicians in this field as the place to turn to for accurate, trustworthy, reliable information.
In recent years, with the growth of the Internet and the proliferation of social media sites, a tremendous amount of misinformation and harmful information has become available with the simple click of a button. No certification, editing, or professional qualifications are required to publish a book, create a social media page/forum or start a web site. There is now an increasing prevalence of dangerous, inaccurate, often melodramatic, anecdotal and self-promoting sources.
DYNA encourages all patients and families to diligently stick to accurate, reliable, professional resources. Only by doing this and constantly striving to develop positive habits of coping while struggling with dysautonomia, will you find the recovery you seek. Misinformation is as bad as no information and may even be worse. Common sense dictates: if it is too good (or bad) to seem true, then it probably isn’t.
The wealth of misinformation available now days can be hazardous to your health and can hamper your recovery.
The DYNA organization lists the qualified sites, books, and materials that we endorse on our web site.
DYNA is specifically endorsed by the following physicians as the best place to turn to for accurate, reliable information on youth onset dysautonomia conditions.
- Hasan Abdallah, MD, Children’s Heart Institute, Reston, VA, Reston, VA
- Aaron E. Banks, M.D.Pediatric Heart Center, Torrance, CA 90504
- Blair P. Grubb, MD, University of Toledo Medical Center, Autonomic Disorders Clinic, Toledo, Ohio
- Howard Hall, Ph.D., Psy.D., BCB, Division of Developmental/Behavioral Pediatrics & Psychology Rainbow Babies & Children's Hospital Case Medical Center
- Beverly Karabin, RN, PhD, CNP University of Toledo Medical Center, Autonomic Disorders Clinic, Toledo, Ohio
- Alan G. Pocinki, MD, George Washington University Hospital, Washington, DC
- William Suarez, MD, Northwest Ohio Congenital Heart Center, Toledo, OH
- Juan Villafane, MD, Children’s Heart Specialists, Louisville, KY
Some tips for evaluating information
When trying to decide if a source of information is reputable or not, find out and keep in mind the following:
Who is the author? What are their credentials?
Is this information from a dysautonomia specialist? Do they have any medical training at all? Look for people who have clearly been educated, especially those who concentrate on dysautonomia. Even if the author is not actually medically trained, reliable medical sources tend to have their information reviewed by someone knowledgable. The most accurate health information will be published by or with the approval of licensed medical professionals (nurses, PAs, physicians, researchers, etc.).
Is this information from a patient? How long has this patient been managing dysautonomia, and how successfully? Patients who have just been diagnosed themselves are often more susceptible to misinformation and may not be the most well-informed. For more reliable information, look instead to patients who have been successfully managing their dysautonomia for a longer time and who appear to be well on the road to recovery, or even better: a dysautonomia specialist.
Where is the information published?
Medical journals and articles are obviously the most reliable source for medical information. However, keep in mind these sources were written with medical professionals in mind and often use terminology that the general public or even other medical communities are not familiar with. Sometimes these kinds of publications can be confusing for those of us who do not have medical training, so always read medical articles and journals carefully to avoid misunderstanding the information. If you have any questions, always talk with your doctor. Many medical institutions and doctors also now have websites with typically reliable information.
Professionally certified and medically endorsed organizations, like DYNA, can also be a good source of information. However, it is important to make sure that the organization is in fact reputable. Organizations that provide the most reliable information are those that communicate frequently with leading medical professionals.
Information on Facebook, unmoderated online forums, Twitter, journal sites, personal webpages, etc., is most likely NOT professional advice and can easily lead you down the wrong path. Making healthcare decisions based upon what you read online from unprofessional sources can be very dangerous to your emotional well-being and recovery.
How old is the information?
Reliable sources typically update their information regularly. More recent articles and publications have probably taken into account more recent research and information. Websites should also show evidence of being up-to-date. Many sites will note the date of the most recent update. Copyright dates can also be a clue to when information was written or last updated.
How is the information presented?
Are you looking at a well-laid out, professional looking website? A professionally-published brochure or pamphlet? Is the information published by a recognizable company or does it appear to be self-published? Look for indications of professionalism and association or collaboration with experts. Avoid material that is self-published without any professional backing or endorsement.
Also check for simple things, like frequent typos or grammatical mistakes. These mistakes are basic indications of material that has not been properly edited and are probably not from a professional, reliable source.
When viewing videos, look for good resolution and quality editing. Evaluate the material presented in videos with the same metrics you would use for written sources.
Is the information believable?
If something sounds too good to be true, it probably is. Advertisements of "miracle" cures or treatments are bogus.