Valuing the Patient Voice

Author: Karen Copeland

Lately I have been following several patient voices on twitter, and came across this article:

I got kicked off my hospitals Patient Advisory Council…for being a patient advocate by Breck Gamel

I am of the opinion that the patient voice and patient experience is much more valuable than to just nod and smile.  Patients want to do more than approve work that has already been done.  We want to partner together to change and improve care. ~ Breck Gamel

I appreciated the honesty and reflections of the author. When patients (or parents or youth or consumers) are invited to sit on committees, what is their purpose for being there? How will the information they bring be utilized or even asked for?

And how will committees and councils reflect on and address those uncomfortable feelings that may emerge – are they willing to take the risk to allow themselves to hear the hard stuff?

If we truly want to include patients (or parents or youth or consumers) in the change process, then it takes tremendous courage to first ask us about our stories and then listen and reflect on the experiences we share. And yes, this includes hearing about and reflecting on the more difficult and challenging experiences, as well as the positive ones.

Advocates often have to find a delicate balance of sharing positive and proactive experiences while trying to respectfully draw attention to the challenges that exist within a system. We won’t always get it right, but we should not be penalized for bringing forward the very real issues that people are experiencing. We don’t join committees to only be cheerleaders. As Breck Gamel points out in her article, we have a genuine interest in system improvement and we believe that our voice and experiences can make a difference.

With patient engagement and involvement increasing in momentum across the world, it is time to start reflecting on why these voices matter, and how service systems can authentically and actively benefit from this valuable feedback.


  1. Any time I face an issue related to working with hospitals, I’m taken back to the frustration of seeking and failing to find a human face to the machine that tried to save a loved one. I can’t blame them that they failed to treat his condition, but I can be outraged that their approach to reaching the families where they needed to be met was less than stellar. Now, patient advocates come to aid you when you ask for assistance. So, perhaps things are slowly changing for the better.

    Liked by 1 person

  2. […] this is not an entirely uncommon experience for those who find themselves trying to advocate within systems of care – regardless of the system. This can happen when you are advocating for systems change or it […]


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