Finding Your Own Patient Voice

Gwen Mayes
October 31, 2022

One of the most surprising conversations I had while working in industry came when a colleague of mine in the regulatory department called to get my input on the value of patient engagement to the company.  He was drafting a response to FDA’s proposed ombudsmen-type “patient office” and new requirements to include patient experiences in drug development.

We talked for 90 minutes.

For the most part, the conversation was obtuse and impersonal.  We discussed numbers and trends, pie charts and market research.  We kept the discussion at arm’s length as if patients were a group of people we had little in common with or had never met.

It was difficult to bring the conversation home.

Finally, in an attempt to get my point across, I reminded him that we’re all patients at one time or the other.  He hadn’t thought about it that way.  Scheduling doctor appointments, battling the flu, deciphering a medical bill, and a long list of daily encounters with the healthcare system affect all of us, I added, “not some portion of our population we’ve labeled patients.”

I asked my colleague to stop and think about his last doctor’s appointment and what he had learned and what might still be unknown.  I wanted him to see himself as a patient, too.  Once he opened up and started talking about his own experience it was easier for him to recognize the value patient engagement could bring to the company.  His experience wasn’t abstract or foreign; it was full of insights and potential ideas for improvements that could benefit others.

The lessons we seek from patients and the value of their first-hand knowledge can often be answered by our own experiences.

As we wrapped up, I asked him if he felt the need to call the medical affairs department to inquire about the value of the company’s KOLs to the drug development process.

Thankfully, he saw the irony in my question.

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