The internet can be a wonderful thing in a lot of different ways. We have access to more information than ever before, which can lead to us being more informed and more empowered. Gone are the days of having to simply take someone’s word as truth. Now we can check answers, compare opinions and make decisions to the degree we want and not because we have to always rely on someone else.
I was thinking the other day what arguments and discussions must have been like when we weren’t able to simply find the answer with our phones in seconds. So really, I was thinking what it must have been like 20 years ago when the internet was in its infancy and still clunky. I’m often in awe that in such a relatively short time we’ve come so far in how we communicate, create, share and use information.
For all the internet’s wondrous capabilities to connect us and inform us there are pitfalls. The sheer amount of information can be overwhelming. How do we know what’s true or a fact? How do we know who’s an expert or that the person we may be communicating with is even who they say they are? These are important questions to find answers to in general, especially when we talk about information related to hepatitis C transmission, screening, diagnosis and treatment.
Let’s take a more detailed look at some pros and cons of the internet’s role in accessing hepatitis C information.
Private – Unfortunately, being diagnosed with hepatitis C can come with stigma and although a health provider may give you some basic information, finding more beyond what you were given could mean having to tell someone your status and risk being judged. Disclosure is a sensitive issue for each individual and I’m not going to go into that here. What I want to stress is the benefit of anonymity the internet provides. You can search from the comfort of your own home without fear of being judged and at your own pace.
Comprehensive – Anything you want to know about hepatitis C can be found online. From transmission and screening to treatment and healthy living. If you want to know more about medication or trials, the HCV Advocate has resources for that. This large amount of information means that you never have to take someone else’s word about a particular issue.
Ease/Speed – Although not everyone has access to the internet, those who do will find that it can be easier and faster than asking someone or going to a place that’s some distance away. Often, it’s also faster because you can get any information you want on hepatitis C in a matter of minutes with a few searches.
Lack of physical connection – The downside to the privacy the internet gives us comes in a lack of physical contact. Connecting with other people who have experiences similar to ours can be invaluable in moving forward. You can find communication online in the form of chat rooms and forums. These can provide a great deal of comfort and connection, but they can’t provide the same type of connection you get by sitting in a room and talking face to face with another person who deeply understands what you’re going through.
Quantity – Such a large amount of information can be overwhelming. As an example, if you type “hep C” into Google it will find 3.98 million results. Whoa! Knowing how to sift through that information can be difficult. If you’re like me, you’ll often go to the top links on the first page, but they may not have what you’re looking for so you may continue looking. This sheer size of information can be scary but it doesn’t have to be. This is why the HCV Advocate is a great resource. Not only does it have comprehensive information on all parts of hepatitis C, but there are links to external resources where you can continue to grow and expand your knowledge.
Complexity – A big drawback to online information can be its complexity. If we are searching in the privacy of our own home, alone, and we come upon something we don’t understand partially or fully then we don’t have anyone to ask. This is a big reason why the HCV Advocate strives to have comprehensive and easy to understand information and resources. You don’t have to sacrifice breadth and depth to make information simple. It just takes a little more work. So, if you find yourself reading something (on any website) that you don’t quite understand then take down some notes and write out questions. To whatever degree you are comfortable seek out someone you trust to discuss any of the questions you have.
Verification – This is the big one. How do we know what we are reading is accurate? What if two websites have slightly different information on the same topic? These are some of the biggest questions to answer and challenges to overcome when using online information. It’s not only the amount of information but the speed at which it changes. There are lots of things about hepatitis C that we know are likely not to change, such as how it’s transmitted. Yet, there are other aspects like treatment that change very quickly and make verification even more difficult.
The above pros and cons are of course my opinion and aren’t exhaustive. These are some of the frequent ones that I myself run into. Many of you may have different experiences or different thoughts on these and others. I wholeheartedly believe in the power of the internet to facilitate change and help us bring an end to the hepatitis C epidemic. As with all tools, it’s how we use it that will be the ultimate decider.
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Matthew Zielske currently works as a HIV/HCV special populations prevention specialist at an HIV services organization. He utilizes a harm reduction model in his work with the substance use population focusing pointedly on persons who inject drugs. He is currently conducting research on Health Literacy and hepatitis C for his Master’s Thesis in Communications.