I used to be primarily employed as a healthcare provider. If you’ve read my articles before, this may come as a surprise to you, because I’m a situationally mute autistic person. The care I provided was often during the first time a patient interacted with a medical condition with long-lasting effects, such as asthma, heart disease, or seizure disorders. It was a very common experience for my patients to not understand their condition, how to manage it, how to navigate the healthcare system to receive appropriate treatment, and so on.
In most cases, I would refer these patients for more specialized care. To help them navigate that process, I would do my best to give them a brief introduction to what’s going on inside them, what management for it generally entails, and suggestions for how to communicate with specialists. I would also suggest that they do their own research on their condition so they can become their own expert, both for self-understanding and for self-advocacy when seeking care. This last suggestion often resulted in a response of frustration from my patients, even though I believed it was sound. Learning more about information seeking behavior has given me a clue about this reaction, and what I would do differently now.
In medicine, as with many other fields, research and care standards are advancing rapidly. While it was once possible to stay apprised of developments in medicine as a whole, now the flood of information is sufficient to overwhelm specialists who try only to keep up with their own specialties. This experience of information overload can result in a variety of outcomes for providers, and the same is true for patients.
Patients have the additional disadvantage of not being trained medical providers. While we have often gone through years of guided training to wrap our heads around medical concepts and the details of different conditions, patients are thrown in the deep end and told to swim, with the alternative being access to substandard care or even death. The combination of stress can lead to a variety of information behaviors, ranging from accepting the first piece of plausible information about their condition that they can readily comprehend and not digging further, to avoiding seeking any information at all in order to avoid the resulting overwhelm and anxiety. These behaviors do not serve the patient’s interest, but without guidance for how to navigate the torrent of information available that may be relevant to them, they are becoming increasingly common.
Knowing what I know now, I would have interacted with those patients differently. Rather than teaching them about their conditions and encouraging them to do their own research, I would focus instead on information literacy techniques to manage the volume of information they were likely to encounter. This could take the form of a list of reputable vetted resources to limit the number of sources they have to consider, evaluation skills to help them determine whether information was accurate and relevant to their needs, and synthesis and application skills to leverage the information into actionable knowledge to improve their health and their ability to receive care.
Librarians, including medical librarians operating in med schools and hospitals, need to not only provide ready access to information, but to teach the necessary skills for sifting through it without becoming overwhelmed. And these skills need to be taught not just to medical practitioners, but to patients and family members as well. The librarian’s role of teaching information literacy skills is more crucial now than ever, and as our understanding of medicine and other fields continues to expand, those skills will only increase in value. We need to implement policies for provision of education to providers and patients, and the sooner we do so, the better.