Is a Patient Advocate, PA a Subject Matter Expert, SME?

Is a Patient Advocate, PA a Subject Matter Expert, SME? 

I would argue a resounding YES! 

Now let me clarify that I am not talking about paid Certified Patient Advocates, CPAs, another confusing acronym, (read my previous blog on acronyms), the people who help patients communicate with their healthcare providers, so they get the information they need to make informed decisions about their health care.  

And I am not talking about paid patient navigators or advocates who help set up appointments for doctor visits, diagnostic testing, or seek financial, social, and legal support.

And I am not talking about the paid advocate hired to help settle medical debt. 

I am talking about the patient, whose lived experience of their disease state leads them to become a subject matter expert, educating those in the medical industry of the real-life experiences of the disease for which they were and are being treated.  

I am talking about The Patient Advocate who is invited to sit on panels, deliver keynotes, and speak of their lived experience, so the healthcare industry not only hears their voice but is inspired to make real and systemic change in the way healthcare is delivered. 

I am talking about the value this Patient Advocate provides but is generally not compensated for as a subject matter expert. 

Until last year, I would be invited to sit on a panel or deliver a keynote as a Patient Advocate, BUT the cost to participate was mine. And an Honorarium was never offered. 

I began to realize that my voice at a conference or summit’s value was checking the box. Yes, we had an advocate speak. 

Recently I learned that two experienced advocates and speakers were invited to speak at a conference. Neither one of them could afford to take PTO or time away from their families without, at the very least, transportation and accommodations covered IN FULL. 

So, they declined.  

The sad reality is that their invaluable lived experience, apparently has no monetary value, unlike the PhD. or MD. or hundreds of others who have published papers, have certifications and licensures who are most often paid to speak. 

I respectfully submit that the degree of the lived patient experience is as credible and valuable as any other subject matter expert with multiple letters after their last name. 

As patients, and advocates, we must advocate for ourselves.  And this means negotiating our value, asking for what we are worth. 

We must no longer agree to speak for FREE. 

We must insist that travel and accommodations are covered, and a reasonable honorarium is paid. 

 For every problem there is a remedy. 

Here’s mine: 

These Patient Centered Conferences are loaded with industry sponsors with deep pockets. Why not ask them to reach in and sponsor a patient advocate speaker on a panel or keynote.   

This investment is a triple win, ensuring that the voice of the patient is not missing, and that the healthcare industry gains valuable insights, while fostering a positive reputation. 

Until we, as patients, assign value to our experiences, industry will not honor our value.