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Health Literacy Requires Talking with People – Not Patients

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“When someone is having an acute situation, that is not a teaching moment.” Peter Pitts 

I recently participated on a panel at the STAT Summit with two brilliant healthcare thought leaders, former FDA Associate Commissioner and current president of the Center for Medicine in the Public Interest Peter Pitts, and leading patient advocate and podcaster Matthew Zachary. We explored the value and urgency of health literacy and, to take a play on the old saw that everyone is a patient at some point, called our session “We the Patients?” (Note the question mark. That’s on purpose.)

Everyone wants to help patients, but healthcare noblesse oblige is so 20th century. People seeking healthcare are more than patients, and we need to communicate with them as people who happen to be living with a specific disease or condition. While different people have different degrees of engagement, meeting them where they are and speaking with them in ways they understand is essential to a successful collaboration and to achieving health literacy. It’s not about reading level or “Plain English” (although both are important), it’s about talking with people at any and every level at which they are ready to be engaged when they are ready to be engaged.  

There are a lot of amusing (and disturbing) Instagram Reels and TikToks poking fun at MLR-approved legalese that appear in pharma ads. Ubiquitous ads and product communications have become a parody of themselves, and the inclination can be to go the opposite direction. But as Zachary wisely shared overly sanitized language can make communication worse. “After a diagnosis, you're often in shock and at the mercy of being told things about the condition. But who is responsible for telling you?” People living with disease end up becoming their own researchers, students, navigators and advocates. But here’s something they are not -- part of the decision-making process with pharmaceutical companies in creating better, more focused, timely, comprehensive, and comprehensible messaging. 

How can we help pharma companies better communicate with patients? A good place to start is by digging into the social science research (and there’s lots of it) to really understand where the person is in the information journey and inviting them to engage. Consumer brands do this regularly, but in biopharma communications (inclusive of provider/patient communications), the default is on “hard” vs. “soft” science – and that is a mistake that needs to be rectified if we are to honestly move health literacy forward. We (and that’s an inclusive “we”) need to know what motivates all members of the patient healthcare ecosystem (alas, not all patients are the same). By learning motivations, we can be equally engaged with people at any stage of their health journey.  

We can’t have health equity without health literacy. If we are going to improve health literacy and therefore improve overall public health, brands and companies need to engage early and often with people who have lived experiences.