Imagine for a moment you are a patient considering clinical trial participation. Or perhaps you really are considering clinical trial participation (good for you)! Either way, let’s say you want to understand more about informed consent in clinical trials. If you are like most patients today, you’ll look to a search engine for answers. So go ahead and do that. Head to your favorite search engine and type “informed consent clinical trials.” I’ll wait right here for you to return.
What did you find in the search results?
Here is what we noticed. First, patients have to filter through a lot of information to find what they need. They might find regulatory documents intended for research professionals mixed in with introductory content about informed consent. Second, the introductory content available is primarily static text. This static text is helpful, but it’s not as rich or engaging as it would be if accompanied by visual or interactive media. In short, it’s not easy for patients to educate themselves about informed consent in clinical trials.
Providing Relevant Patient Resources
We wanted to find a way to help people better answer the question, “What is informed consent in clinical trials?” The approach we took was content curation. We began by choosing introductory topics related to informed consent, wading through search results, and identifying relevant content (mostly videos). We then organized and presented the information with an interactive infographic. Using this interactive infographic, you can easily select and view information on specific informed consent topics. You can even share your selected list with others using social media or email.
To explore the interactive infographic yourself, simply click on the image shown above.
The Limits of Online Clinical Trial Resources
Though content curation can help us educate patients about clinical trials, it may not always be enough. One limitation of curation is that you are constrained by the content that currently exists online. In many cases, that’s not a problem. However, for this project, we found a shortage of openly-available, introductory visual content focusing on topics that matter to patients. Instead, we found far more informed consent videos addressing the interests of professionals. This shortage of patient-centric clinical trial content is not unique to the topic of informed consent.
To fill gaps in clinical trial education, content creation will sometimes be necessary. This lesson is one that was definitely reinforced through our work on this project. We still believe in the power of content curation and will continue to explore ways it can help educate patients about clinical trials. However, we also believe that some clinical trial content not currently in existence really should be provided to potential clinical trial participants. We plan to create this content and make it available in the coming months.
In the meantime, we hope our interactive infographic will make it easier for people to answer the question, “What is informed consent in clinical trials?” If you know anyone who might benefit from this tool, please share it. And let us know what you think in the comments or on Twitter.