We often talk about lack of respect, not being listened to, being a token patient partner. We urge our colleagues to deal with these issues. They respond saying they respect and value us but often these feelings don’t translate into actions. Their actions don’t result in our being respected, being listened to, being treated like an equal. So why is this?
We suggest that these are symptoms of an underlying condition. Not much will change unless we tackle the condition, not just the symptoms.
So what is this condition?
It is the unconscious cultural lens. Every workplace has its own culture. Healthcare, like any workplace culture, it has its own norms, values, language, and ways of working that form unconscious assumptions. Patient/caregiver partners enter into this culture and work within it. Those who come from similar backgrounds and adapt well become the “favoured few” who form the core of patient/caregiver partners. If we cannot, we are seen as “difficult.” We experience this as lack of respect, lack of accommodation, tokenism, not being listened to.
This workplace culture affects everything:
- Where meetings are held and when
- The language, terms and concepts framing the discussions
- The underlying values where academic and professional credentials are highly prized
Why is it important to deal with this “condition”?
If we are ever to be equal partners, then our colleagues on the healthcare and the health research side need to understand their own work culture and its impact on them and on us. They will need to open up their work culture so that we are no longer outsiders. If mainstream patient/caregiver partners are struggling as outsiders, how will it be possible to include people outside the mainstream?
This insight arose from our analysis of the survey results of patient/caregiver partners done to support the CIHR SPOR refresh process. Do read the full illustrated report for more details.