Patient Engagement and Other Mumbo-Jumbo

Say what you mean and mean what you say.

It sounds simple, but nothing could be further from reality in healthcare. That doesn’t mean we shouldn’t try, right? I have to wonder about the term “patient engagement”. I’ll be straight with you: it leaves me feeling confused at best, insulted at worst.

I’m confused about what you want from me, what I’m going to get out of this “engagement”, and where it will go. I’m insulted because it feels like whatever the goals and outcomes, they serve you, not me.

I’ve not been asked how I feel about the goals and outcomes my healthcare providers are looking to achieve through patient engagement.

I’ve not been asked what my goals are or what outcomes I want to see achieved. You do know my goals change regularly, right? What provisions have you made for that?

Let’s break it down …

First: We often see buzz words and phrases being tossed around because, well, they’re buzz words, which means they are the terms of the moment. Sure, they’re trendy and you sound cool and current, but if your end goal is a different response … you’ve missed your mark.

Second: When the association between words in a phrase is unclear, we tend to ignore it completely or at the very least be suspicious of the motives. I’m going to guess that neither is the goal … again, you’ve missed your mark.

Third: Patient engagement is a means to an end but not only do I not understand the end goal, we haven’t even had a conversation about what that end goal should or could be. Again … you’ve missed your mark.

Simply put, the word engagement is devoid of emotion. The words together don’t mean anything to me. I believe the intention is to engender feelings of warmth and caring, but they leave me confused, suspicious, and cold. Not a good start.

Engagement is a technical term to describe a relationship. It can be one-sided and if the two parties have not had a conversation about the end goal, then it is definitely one-sided in terms of decision making and power. And, because we have not had a conversation, and as a patient, I’m expected to be excited about this new “thing” that’s being presented, it is patronizing. It’s what we do to small children who are too young, too immature, and too inexperienced to know better.

Your language must be simple, clear, and honest in terms of the division of power and trust. This is not because we are incapable of understanding technical and academic language. Nor is it a matter of inadequate education. It is because the words we choose to outline our relationship matter.

To start, what do you know about the people you serve?

We may be patients, but we are so much more. Some of us are engineers, teachers, product managers, executives, technology gurus, software developers, and entrepreneurs. Many of us are also caregivers. We hold the hand of someone in need, we park the car at the doctor’s office, we wander the halls of the hospital looking for the correct department, and we listen to the instructions from the doctor or pharmacist.

What are you doing to tap into all that?

Answer that question and maybe we’ll get somewhere.

Here is the story I tell about the time the healthcare system got it right:

I was woken from surgery last year and although the procedure had gone satisfactorily, I had not reacted well to the anesthesia. There was the anticipated pain from surgery to deal with, but also overwhelming dizziness, nausea, and disorientation. I couldn’t speak. I could barely hear, let alone process what was being said to me.

But, I could see clearly.

What I saw was a nurse seeing me just as clearly. She made the decision to keep me overnight in order to monitor my condition. In my single lucid moment, she asked me if I was in pain. My words were slow, but I assured her it wasn’t too bad. I didn’t want to be a problem. I didn’t expect anything but to be left alone. Her response was I didn’t need to be in pain on her watch.

I have not felt so precious, so taken care of, since I was a child with my mother.

What that nurse did was validate my experience, my pain, my person. We both knew she could do nothing about why I was there or anything after I left. But, while I was in her care, I would be comfortable.

Not only had I no pain … I was safe in her care.

It is unfortunate this doesn’t happen more often.

You want patients engaged? Give them a reason. Hear what they are saying and instead of giving them all the reasons why it can’t be the way patients want it, ask yourself why it can’t be that way.

You want patients to be committed to their own health? Give them an experience like I had, because that nurse had a significant influence on my speaking up about patient engagement.

I believe you need to start with a conversation. And, to start that conversation, look at the patient like my nurse did. Do not be swayed by what you want for the patient, because in doing so you do not live up to the covenant of trust extended to you in your role as healthcare provider.

Does that mean we’ll get all the answers to solve all the problems with healthcare? Are you crazy? The problems are too big to take on all at once. All I’m talking about it changing the way in which we tackle the problems.

The solution is not patient engagement: It’s having real conversations.

So, watch your language.

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