What should families keep in mind when researching medical information online?
Once you have a diagnosis, going and learning about your diagnosis can be enormously useful. The more clear and biological the diagnosis, the more concrete and accurate the web-based educational materials are. If somebody comes in with heart block, which means their heart isn’t conducting electricity and we’re thinking about a pacemaker for them, it’s pretty easy to say here’s a booklet that the American Heart Association has and here’s the Medtronic website because we’re probably going to give them a Medtronic pacemaker. You can read what they have to say and they have patient information guidelines that are almost industrialized, because everyone across the country and world thinks in a very similar way about that and there’s not a lot of controversy. That is not the case for all diagnoses though.
– Mark Alexander, MD, pediatric and adult cardiologist and electrophysiologist
With the internet being as prevalent as it is, it’s hard to know what families anticipate when coming in here. I tell a lot of families to not Google things because I think a lot of the stress and anxiety that they come in with is manifested by misinformation, or information that may be truthful but lacks perspective. I tell patients that you are going to leave this office with a certain amount of knowledge and with a name or diagnosis and my job is to tell you everything that is important for you to know to be able to manage yourself or to be able to manage your child. The internet is going to tell you a million things that you are not going to know what to do with, which may be a tremendous burden to you. A lot of people take that advice and are very cautious.
We are also fortunate to have, even if it is rare disease, a network of people that we can direct families to for more information. This helps them to understand an experience of another family in a more directed fashion than just anything that pops up on the internet, which can be unfiltered and cause so much more grief than help.
If they do want to look, I often refer patients to some of our own website information about some disease-specific entities in cardiology. I give a note of caution that some of it is graphic and they may not want to know or see it.
I also tell families who are particularly concerned, or receive news for the first time, that we know that families don’t process all everything at once. They can come back and we can talk about it again. I tell them to think about what I just told you, whatever you can recall of what I just told you. We don’t necessarily need to make decisions immediately but we can chat about it after you have had a little bit of time. I find that to be more helpful and almost always when I do that, somewhere along the way they find this person or that person whose brother or cousin or whomever has been affected similarly. They themselves feel better about the situation knowing that they do not stand alone and that this is manageable.
– Susan Saleeb, MD, pediatric cardiologist