The Person Before the Diagnosis: A Parent Perspective on Using the “Right” Language

“When talking to families, it is important to remember that there is always a name before the diagnosis, a human who is valued and loved. In fact, for some of us, the diagnosis is merely a footnote.” (Maria; Parent Partner) 

In preparing to write this blog, the parent advisory members met to discuss using lay language in research.  And as with many conversations involving patients and families, we came up with considerations rather than definitive answers.  One important point that we talked about is to consider the language you use, both written and spoken, and to consider how it might affect a diverse audience (patients, parents, caregivers, and other family members). Below are some examples to help researchers consider the language they use in grants, publications, and presentations. 

At ENRRICH, and increasingly in many other research environments, patients and families are not only part of the audience, but also more directly involved with all other aspects of research, including in reviewing grant applications.  “When we started reviewing a grant application for the ENRRICH catalyst grant competition” Gord shared, another member of the family advisory, “we couldn’t even figure out where to start.”  As researchers prepare their applications, keep in mind that some, if not most, of the evaluation panel will not have your expertise in your field of study.  And that is not to suggest that every part of a grant application needs to be in lay language, but every application should have a way for everyone to understand the basics.  It might be a lay summary at the beginning, or in different paragraphs throughout the application, that explains why we should care about this work.  This holds true for grants, papers, presentations, and other ways that you might share your research findings. Many people (including other researchers, outside of your field) will likely find it easier to read a grant application or paper if at least they understand the basics before wading into the much more complicated methods section.  It may be useful to consider if someone who doesn’t have a PhD could tell you what your project was trying to do and what you did (or did not) discover after reading your paper.   

During the last ENRRICH quarterly meeting, as I sat and listened to the presentations of ongoing projects, I realized how far we have actually come in explaining science to people like me.  I could understand most of a complicated gene therapy experiment using mouse models.  And just to be clear, this is not because I understand anything about that, but because the science was explained in a way that I could follow for the most part. The researchers had worked hard to help the audience (even audience members like me) understand their methods and results.  And I appreciated that effort and I hope it was not at the expense of what the clinicians and researchers want to hear.  I have listened to talks where I heard the mouse model of disease referred to as ‘mutated mice’.  I had a visceral reaction to ‘mutated mice’, which did not mean in the superhero way of being able to jump over tall buildings or shoot spider webs out of your wrist.  The researcher was very careful to not use this term for the children who had the disease, but my brain still made that connection when they talked about the mice.   

I can understand that this is how mice may generally be referred to in research, and previously, scientists using mice and genes may not have had a whole lot of direct contact with patients or families.  But that world is changing, with institutions, grants and even journals asking questions about why this research is important to the patients and did you involve patients and families in your work?

Also, the audience you are presenting to is changing.  As a researcher, you have quite a bit of power.  Your words have the ability to profoundly affect how an audience receives information.  Your words might be seared in our memory because this is our lives and the lives of our children that you are talking about. 

And nobody knows how to do this immediately, and families are different, so if you aren’t sure what words might be appreciated to use – or important to avoid, just ask.  Just as researchers and clinicians all have different acronyms and ways of speaking together, so do patients and families. Consider the impact that you can have, if you deliberately use family-informed language at a conference, and better yet, if you share with your research colleagues WHY you are using the words that you are, to describe something differently than what’s typically used in the research community. Consider what that could mean to a family member who may be sitting in the audience. 

So as patients and families join you in the research world, please frame your research in a way we can all understand, handle words with care, and proceed with caution.  If you aren’t sure, reach out to patients and families, like our ENRRICH family advisory, for ideas and suggestions.  The good news is that there may not be a definitive way to explain or say something. There are many ways to get it right when we are all open to listening, learning, and valuing each other.     

Carrie, on behalf of the ENRRICH family advisory council (Carrie, Trish, Gord, and Maria)