An Ear for the Unsaid: The Importance of Hearing What is Not Said by Patients

From time to time, the Experts by Experience series features columns–Knowledge Translation–by guest authors who underscore the need for building an engaging, collaborative health care culture. Knowledge Translation columnists include health care leaders, clinicians, researchers, and marketing and communication professionals who translate the importance of integrating first-hand experiences of patients and caregivers, in ways that are meaningful and relevant, to engage and expand the dialogue on patient experience.

“The activity of interpreting might be understood as listening for the ‘song beneath the words.’” - Ronald Heifetz

It’s easy in life to get hung up on what someone has said. And for good reason: there is so much obvious and embedded meaning comprehend in the what people say and even in how they say it. We are also often anticipating and looking for specific information within the communication of others, hoping to inform our own set of knowledge and advance our own goals.

This concept is never more important than when we are considering what patients and caregivers share--and what they don’t share--about their health and their care.

The study of sociolinguistics, especially its subfield of discourse analysis, teaches that everything in human communication is meaningful and tells us something–something about the communicator, something about their perceived relationship to the recipient of the communication, and to the content being communicated.

But the pillars of sociolinguistic and discourse analysis do not stop at what is said; in principle, sociolinguists believe that in order to truly appreciate what someone has communicated, you have to also consider what they did not say, or, similarly, what they could have said but did not. This helps provide perspective and nuance to each statement and helps with the interpretation of others’ communication, whether it is a deliberately crafted message, like an important work email, or a free-flowing, natural recounting of a personal story to friends.

And then there’s the appreciation of narratives. Think about the last story you told. Think about what details you chose to include and exclude, and why. And how the “picture” would be different if those details changed.

There are countless instances in which the increased appreciation, understanding, and scrutiny of language can affect the countless interactions in health care. But on the topic of considering and recognizing the value in what patients and caregivers share and do not share, I’d like you to consider a patient or caregiver response to a direct and important question. If possible, imagine or recall a response that took the form of a narrative and especially one that either didn’t adequately answer your question or provided too much seemingly unnecessary information.

Why is that? They heard your question.

In this case, you may be fully aware of what wasn’t said, since you feel your question was left partially or fully unanswered. But to the patient, relative to their reality, they have or have attempted to share the most salient and important information. And this presents a number of important possibilities:

  • they don’t fully understand your question. Thus, they are unable to answer it according to your expectations,
  • the question is not representative of their lexical, practical, or conceptual health reality and therefore, to them, there is no “direct” answer, and/or
  • they are trying to communicate the topics and information that is most important and relevant to them, regardless of the question asked.

In these instances, comparing what they are actively telling you with what they are not telling you can help you get the information you are seeking, while also helping to detect areas of potential misunderstandings. It will also help you evaluate and possibly optimize your line of patient or caregiver-focused questioning, as well as give you an opportunity to step into their world, via their narrative and what they wanted to share with you.

Another key example of the importance of what isn’t being said by patients comes from social media. In my professional experience, health care providers, researchers, and other industry professionals assume that patients talk about certain topics, certain side effects, certain risks in their online communication, especially among each other on support forums. Often, these assumptions are based on attributing the topics that are personally relevant to those seeking to gain insight into patients and caregivers. When professional communication experts demonstrate that the topics and information that patients and caregivers choose to discuss and share online do not match the previously held expectations and assumptions of those awaiting the results of the research, their reactions are often a mix of surprise and frustration.

Simply put, patients and caregivers share online what is most important to them. The unstructured authentic, unprompted (in the conventional research sense) communication in healthcare social media reveals topics that are most relevant, questions, and emotions they have at specific points in their journeys, and the words they use to describe what they are experiencing.

The absence of a particular topic is also telling. Typically, they aren’t talking about something because they may not be aware of it. Or, it may not be important to them. Maybe it may not be as important as the things they are choosing to talk about.

Recognizing and appreciating both the information patients share and the information they do not share provides a doubly-as-insightful perspective on the patient experience, patient outcomes, and the information that patients hold.

Experts by Experience is a collaboration between Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the author:  A sociolinguist with a focus on healthcare communication and research, Monica St Claire oversees the Insights product line for Inspire.

Choose a message to share 
True listening requires discernment.
Everything in human communication is meaningful and tells us something–even silence.
It’s easy to get hung up on what someone has said. But what about what they HAVEN'T said?

At some point,using Natural Language Processing and Deep Learning – two subsets of AI – what the pAtient says, writes, etc will b correlated with hard medical data points such as diagnosis, vital signs and outcome. I think this will have the potential to give us deeper insight within healthcare, but I suspect it also has an uncomfortable element of dehumanization – and isn’t necessarily a good thing.

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