When organizations first dip their toe in the waters of engaging patients on an organizational level through a committee or advisory group or council, they need to carefully inspect their motives.
- Do they really want to hear what patients have to say?
- Do they truly give patients a chance to use their voice to contribute to hard decisions?
- Do they take the time to do the important work to flatten the hierarchy so patients can be heard on a level playing field with health professionals and administrators?
Three years ago, I spoke about Meaningful Engagement or Tokenism in Melbourne. It was a presentation for the Consumers Transforming Healthcare Conference hosted by the Health Issues Centre. I wrote an article based on my presentation for the Health Issues Journal here.
My time in Melbourne was extraordinary because I stayed with Dr. Catherine Crock her family. Cath is an exceptional and beloved pediatrician, and a true champion of patient and family centred care. She is also the passionate Executive Director of the Australian Institute for Patient and Family Centred Care.
I spoke in Melbourne about the check box mentality of engaging patients. (In Australia, they call check boxes ‘tick boxes’). Are you ticking a box that says, “yes, we have a council, but we haven’t bothered to ask the patients anything important. Or if we do, we disregard what they say and charge ahead and make our own decisions.”
It is hard work to meaningfully engage patients. Sometimes you may hear things you don’t want to hear. Most of us patients who want to give back to the health system have constructive feedback to give – which is both positive and negative. If you aren’t ready to hear it, maybe it isn’t the right time to start up a council.
If you are looking to merely tick your box…well, I respectfully submit that’s just a waste of our time. We are caring for ourselves or our loved ones who are involved in the health system. We don’t have the time to be your cheerleaders.
We are busy starting a revolution to change the landscape of health care. And that’s really important work. You are welcome to climb on board, or please just move out of our way.