How 'patient influencers' may be misleading patients on prescription drugs
Staying informed on the science or fieldSuggesting that physicians know bestThis study interviewed patient influencers to understand how they communicate health literacy on pharmaceutical medications on social media to their followers. The HBM guided our data analysis and the development of the findings. The HBM constructs help researchers identify specific factors that influence behavior.
No one knows everything so social media bridges that gap to where you get to learn, you know, learn a lot more stuff. Learn and meet new patients and what their experiences are, because you know, like with SLE...You can have ten patients with the same thing, but it affects each person differently. You are able to speak to survivors in L.A. or New York or out of the country.
We are the CEO and stakeholder of our health. And, despite all the barriers and obstacles we might come across, we still have control to navigate our health—whether we are 100% healthy or not. We do have some control in that our overall health status and how we approach it really can affect the outcomes of our life...We already have a negative experience with our health if we’re chronically ill.
In total, 19% of the patient influencers interviewed did not share any information on pharmaceutical medications. However, several of the participants interviewed had strong opinions about patients sharing pharmaceutical information: Some of the patient influencers discussed obstacles that other patients often encountered and wanted to discuss, including communication with their physician, finding the right specialist, prescription medications, and self-management behaviors:
I [will] post about my treatments. I post a lot about the funny things that happen at doctor’s appointments and things that have happened from diagnosis to now, pre-diagnosis. I [will] talk about medical gaslighting. I talk a lot about bad doctors because I’ve had a lot of those.I feel like I’m really empathetic in that I can understand how this diagnosis really rocks your world and changes everything. And then you don’t know where to start.
A total of 12% of the patient influencers interviewed pursued further training in advocacy; they noted that patient advocates “are not allowed to give medical information” and should guide followers to seek counsel from their physicians. All the patient influencers interviewed wanted to empower other patients to “live better” and “be actively involved in their own health”:
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