How To Turn the Internet Into a Useful Source of Diabetes Knowledge

Before a person is diagnosed with diabetes, they probably don’t give it much thought, let alone learn its early symptoms. 

So, what do you do when you notice you’ve been unusually thirsty and are going to the bathroom more often? If you’re like most people, you’d probably Google it. Before you know it, you’re staring at a list of possibilities that range from ridiculous to deadly serious. One result mentions diabetes, and others mention late-stage kidney disease and cancer. You start to feel panicked and overwhelmed, and are unsure what to do next.

Today, the internet is an essential part of our lives and an incredibly useful tool for accessing information about a variety of topics, including diabetes. However, it’s also bursting with data and pieces of advice that don’t apply to your current situation, not to mention half-truths, untruths, misinformation, and satire. That’s where digital health literacy comes in.

What is digital health literacy?

“Health literacy is not knowledge. It’s more the motivation and skills to process information,”  said Stephan Van den Broucke, a public health psychologist at the Catholic University of Louvain in Belgium.

In other words, you don’t need to get a medical degree and memorize all the muscles, bones, and organs in the human body to be health literate. You just need to figure out what’s going on in your body and how to manage it.

Having health literacy means being able to access, understand, appraise, and use information in a way that supports your health and well-being. The definition of digital health literacy includes the same four essential components, but it specifically focuses on information contained in electronic sources like the internet.

Step 1: Access

Van den Broucke said that the internet has made searching for information much easier than it used to be. “Because 20, 30 years ago, you’d maybe have to go to a library, or you’d have much more difficulty finding that information. Now, it’s at your fingertips,” he said.

Of course, that’s assuming you have access to and feel comfortable using a smartphone, tablet, or computer to navigate the internet. Jung Eun Kim, an assistant professor in the Mennonite College of Nursing at Illinois State University, said that this isn’t necessarily the case for everyone.

She studies how people with chronic diseases use new technologies for self-management. Based on the results from her survey of older adults living in rural communities in the Midwest, she concluded that many could benefit from very basic training, like learning how to download an app.

“They need to have more opportunity to get an education,” she said. “I think community and federal or statewide resources are required for them.”

Digital health resources can provide education and significantly improve the ability to manage conditions like diabetes, so it’s crucial that you and your loved ones have the basic tools and skills to get online.

Step 2: Understand

A Google search will pull up a lot of resources that could be helpful, but you have to make sense of them before you can use them. 

“Lots of information, especially on specialized sites, is in jargon or in wording that not everyone will easily understand,” Van den Broucke said. 

That means you may need to look up terms you’re unfamiliar with or switch to a resource that’s written for a more general audience. 

It’s also important to remember that understanding every single word or phrase on a page is not the same as understanding the page as a whole. A resource geared towards healthcare providers or researchers probably assumes readers have some background information you might not have yet if you’re a beginner in the field. And it might be making a nuanced point that is most relevant to people who spend their lives working in that particular field. You can always return to a resource once you’re more familiar with the topic it’s covering.

Step 3: Appraise 

Just because you can access and understand something doesn’t mean you should use it or even trust it. 

“It’s important to have the skill to separate valid, complete, and useful information from the information that might be there for other purposes or that might be simply not very complete,” Van den Broucke said.

You should assess the quality of the resource you’re looking at. Ask yourself questions like: Are there glaring mistakes? Does it seem like something important is missing? Are there inconsistencies in the way information is presented? 

At the same time, you should consider who created the resource. Kim gives the same advice to nursing students and community members. 

“If you see a website for your disease, please check who owns the website,” she said. “And then, who is that?”

On most websites, you should be able to find an “About” page that tells you more about the organization that maintains it and the people who write for it (if you can’t, that might be a warning sign). If you have unanswered questions or are apprehensive, it’s a good idea to seek out additional sources. You can find reliable information about diabetes on websites affiliated with a medical organization, research institute, or a nonprofit with an admirable mission statement.

Federal agencies like the FDA and the CDC also maintain websites that may be useful. Historically, the messaging on these sites has closely aligned with messaging from medical organizations and research institutes. However, the leaders of these agencies have the final say over what gets published, and it’s important to know who is in charge of a given agency and what their motivations might be before deciding if the information is trustworthy.

Van den Broucke pointed out that ownership and mission statements are constantly changing across the internet. 

“If a particular platform is considered reliable at one stage, it doesn’t necessarily hold a ticket for the future,” he said. In other words, you will need to keep re-appraising the resources you’ve used in the past.

Step 4: Use

How to use an online health resource ultimately depends on where you are in your health journey and why you accessed the resource. Websites, videos, and AI chatbots cannot diagnose, provide an official assessment of your health, or prescribe you drugs. If you’re looking up symptoms for a serious illness or researching prescription medications, then really you’re just trying to decide if and when you should see a healthcare provider. 

In cases like that, or really anytime you’re looking for health information, the internet shouldn’t be the only source you consult. You should talk to people you know and weigh all the responses to make the best decision you can.

That being said, the internet is full of great, practical, evidence-based guides about diabetes and exercise, nutrition, and managing stress that you can readily implement in your own life. And if you have questions about treating minor illnesses and injuries at home or about taking over-the-counter medications, then you can find a lot of useful advice reviewed by medical experts.

Furthermore, if you’re already managing a diagnosed chronic condition like diabetes, you may have specific questions about living with the medical devices and taking medications you’ve been prescribed. Sites like diaTribe and the American Diabetes Association have a lot of great resources that can give you answers or at least refine your questions before you take them to a healthcare provider.

How to approach AI chatbots

When they first appeared, search engines like Google made accessing information much easier and faster. Now, AI chatbots like ChatGPT, Claude, and Gemini go an extra step by finding relevant sources and then providing an easily digestible summary of the search results. In other words, not just accessing, but also understanding digital health information has gotten more automated. But it’s best to maintain reasonable expectations for what any one AI product can do – chatbots can’t do everything or replace the level of care from a human healthcare provider. 

Using a chatbot still requires you to appraise the information you receive. Depending on your question, the algorithm may find an answer on a medical organization’s website, or it may find the answer on Reddit. You need to pay attention to the sources it cites – or doesn’t cite.

If you ask a chatbot to get more personal and analyze your health data or the nutritional content of your food, the accuracy of its response will depend not only on the quality of the information it can find on the internet, but also on the quality of the information that you give it. For instance, research shows that chatbots provide inaccurate carb counts if they don’t recognize a dish. But even if they do recognize the dish, their nutritional assessments fall short when they don’t have information about the portion size. 

These issues might be less problematic if chatbots were to always tell you when they lack sufficient information to provide an accurate and complete answer to your question, but sometimes they can respond confidently anyway, without clear qualifications. 

“Not everyone is an expert in everything, but whereas a doctor might then say, ‘Well, sorry, I cannot really say that because I don’t have expertise in that domain. I will refer you to somebody else.’ I’m not sure if this is what happens typically when you consult an AI tool,” Van den Broucke said.

If you have doubts about what a chatbot has told you, Van den Broucke recommended asking it the same question in another way to see if you get the same response. But it may not always be obvious that you should have doubts. So, in general, it’s better to think of AI-generated responses as useful starting points for your health research rather than for diagnosis or diabetes management. AI can also help you come up with better, more specific questions, which you can then bring to a healthcare provider.

How to approach social media

Social media platforms allow everyone who logs in to contribute to an ongoing conversation. If you are looking for information, remember that every post and comment is, in some way, a response to something else. It’s easy to miss context if you can’t follow the whole thread of a conversation, which may include references to other sites and make liberal use of obscure memes. 

Because everything is filtered through so many authors and audiences, understanding things on social media takes a lot more work than understanding an article written by one person for one audience. Furthermore, the fact that there are so many contributors means you have to appraise every post and comment individually, which can be really difficult given that many accounts are unverified and not everyone’s motivations are easy to follow.

However, if you’re careful, you can find informative videos on platforms like TikTok and YouTube and useful comments on message boards like Reddit. 

When you watch a video or listen to a podcast that resonates with you, try looking up the person or organization that created it. You might end up on a site full of useful resources, or you might find a reason to be more skeptical of what you just watched. If the creators don’t seem to exist outside of the platform you’re on, then it’s a good idea to look for other sources that either confirm or refute what you’ve seen.

As for Reddit and other platforms where users are anonymous, you won’t be able to figure out who is saying what without a serious invasion of privacy. So, nothing you see there should form the basis of any serious decisions you make about your health.

“When we try to use Reddit, it’s just an additional tip,” Kim said. “I just want to confirm something I already decided.”

The bottom line

You can’t always talk to a healthcare provider, and the people in your life can’t answer all of your questions about diabetes, so searching the web is the next best thing. 

The internet is full of excellent diabetes resources, but they exist alongside a bunch of unhelpful and even harmful content. Whenever you see something that seems useful, you should take the time to evaluate it. Consider these questions:

• What is this actually saying?
• Are there any words or terms I need to look up?
• Who made this? 
• Do I trust them? Why or why not?
• Whom did they make it for? 
• Is it possible I’m missing any important context?
• What does it actually mean for me to use this information?

Lots of things you find on the internet will probably fall short in one way or another, but taking the time to understand their shortcomings is worthwhile if it helps you refine your approach to searching for the information you need to manage your diabetes.

Learn more about diabetes education and self-management here:

• 7 Strategies for Self-Advocacy in Diabetes Care
• How Artificial Intelligence Is Changing Diabetes Care
• 11 Ways to Connect with People with Diabetes Online