I’ve been to a lot of stuff recently. Health stuff. Conferences, workshops, discussion groups. I’m hearing a lot about the need for “culture change” and “paradigm shift” in healthcare. It’s certainly needed. The system is half broken and propped up by energetic, exhausted, committed wonderful people, many of whom are working beyond their capacity, unsustainably. They feel bullied by the system or in some cases by individuals.
They need help, but somehow lack the skills to ask for it from the public, who are demanding change, and are willing to help.
But when it’s suggested that we get patients involved in the change, embedding them at every part of the healthcare and health education system, this is resisted. Yet this is the culture change we talk about. It’s ironic.
I propose an acronym to help with the shift to a true patient centred healthcare system where patients are the experts who are consulted whenever policy, curriculum or practice is designed or change implemented.
The patient is NEARBY.. It’s an acronym. yay!
Notice– is the patient present? token? how visible and valued and voiced are they?
Empathise– what are they feeling or would they feel about what’s just been said, just happened, how people are behaving?
Ask and advocate. If the patient is there.. consult them. If not, reflect and imagine what they would say. If they are absent, represent them with your best guess.
Reflect and resist temptation to rationalise it away. Notice your excuses for not having the patient involved. this might involve –
Biases, behaviours, blaming– its ok because……..
eg.
“we don’t need them.. we do patient centredness well already.”
the noisy consumer is too much of a problem.
“this is too hard for x reasons.”
“You can’t trust patients to represent health fairly- they just want a forum for their own experience.”
“if we explain it to them, they will understand they are actually represented here. They should have trust in us”
Yell. The patients voice might require you to make a scene, be the unwitting target of reaction to change. You might feel isolated and sense being labelled as difficult or a pest. Better you than the patient!