This essay is a long time coming. Here is a not-so-eloquent description of my writing process. I get stuff stuck in my head. Then I write about it – both to make sense of it and to get it unstuck out of my head.
There are many organizations in the health and human services sector professing to do patient and caregiver engagement. Patient partnership is splashed all over their websites. This is a big change since I began in the patient engagement field twenty years ago. Back then, it was mostly children’s hospitals formally partnering with families. Since then, the movement has spread to the youth and adult world, which is a good thing. But.
Just because you put partnering with patients on your website doesn’t mean you are doing it. Or doing it well. The evaluation of the patient experience during engagement efforts is slim to none. Mostly, us patients swap notes about organizations behind the scenes. We share stories of our experiences being patient partners and let folks decide for themselves if they want to be involved. Sometimes we are more overt. “Stay away from that group,” we say. Other times we write about it, like this article Reflections on Patient Engagement Gone Bad.
What has been stuck in my head is this: when patients give feedback about an engagement – even if it is solicited in a feedback forum or debrief – if we are doing anything other than abject cheerleading, here is what happens. We get minimized, dismissed as whiners, ghosted and ultimately put on a shit list.
Which is exactly what happens when patients give feedback in health settings at the point of care or through patient relations! Coincidence? I think not. I will dare to say that patient engagement folks have a hard time with the truth, even if it is presented in a polite and non-threatening way. (Because goodness knows, patients need to behave themselves, not show any emotion and be polite - sarcasm intended).
Why is this? Is it because patients should be grateful to even be asked to be involved with an organization? This is the ole ‘crumb’ model of patient engagement. Be happy with the crumbs we give you and shut up otherwise.
I’ll give three anonymized examples of this happening.
1. Patients are asked to consult about a strategy for a new organization. The consultants hired to write the strategy facilitate a session that is not sensitive to patients’ vulnerabilities. (This is at the height of the pandemic). They are squeezing difficult stories out of patients just to write their strategy. Participants are distraught and crying. Afterwards the organizers sent out an email with a link to a suicide hotline. When patients give feedback to that effect, calling out the lack of sensitivity in the facilitation? They are ghosted.
2. An organization professes to be all about patients, but the founder refuses to collaborate with patients in any way – whether through co-authoring or co-presenting with patients. Efforts to partner are met with radio silence.
3. Another organization arranges a video session with patients and professionals. When the patient gives feedback about how the session went sideways at a debrief, they are immediately dropped and ghosted, despite having volunteered their time with this organization for over a decade.
My question to you is – you want patients to give feedback about their health experience and systems. But this thirst for feedback ends when it comes to giving feedback about your engagement efforts?
The exact same principles apply about feedback around the boardroom table and at point of care. How can you get better unless you listen to and action feedback? Do you really want to be surrounded with yes people or do you want to learn, grow and improve? (Sadly, I think the answer is mostly the former).
Patients become involved with your organization because they have thoughtful and constructive things to say. If you are feeling prickly reading this - good! Discomfort means you are growing. Please take the time to reflect on these words.
If you don’t want to hear it, you risk your reputation in the patient world. If you can't handle the truth, then you shouldn't be in the business of patient engagement. You also risk betraying the very patients that have put their time, energy and heart into your work. You have lost their relationship and their wisdom. And that’s a crying shame.