Patient Engagement – from theory to practice

Why is Patient Engagement so difficult?

I recently had the opportunity to ruminate on this when I took my son to see one of his specialists.

Background: My son is undiagnosed, but has been for long enough that I am practiced at seeing (very) many doctors. We are used to cataloguing symptoms, tracking weights, growth charts, getting referrals and such. As one of the founders and the chair of a rare disease organization, I am used to talking to health care providers in a non-clinical setting. I have been to this dance before and it is not new to me.

The doctor we went to was one with whom we have an excellent relationship – in fact a health care provider that truly believes in the value of patient and family knowledge. We were seeing a doctor that we see often, and one whose opinion we value.

This was a slam-dunk ePatient situation where I should have been at my most comfortable. Yet I wasn’t. After all these years, I still wasn’t. Why?

Patient engagement on behalf of my son is a high stakes game where if I do it wrong I’m not the one who pays. If I get the words wrong, if I fail to engage the health care provider, if my work as an advocate for him falls on deaf ears, then it is not me who pays. It is his health care that suffers. This is an extraordinary amount of pressure, and a pressure that I carry every day.

This particular visit was a high stakes game, for I carried with me new knowledge. I was excited because I believed I was bringing something new to the table that had the possibility to bring us to a new chapter in his diagnostic journey. It was important that I was seen as an equal in his medical team. I brought information that needed to be acknowledged as having equal weight as any being brought from any of his other health care providers.

I’m realizing that despite the great relationship that I have with this doctor, my every interaction is still coloured by every other interaction I have had with other health care providers that have not gone as well. I carry with me all those dismissive, patronizing and rude interactions. A lifetime of not being treated like an equal has stayed with me and remains difficult to shake.

Part of this journey in caregiving for my son is also the responsibility to teach him how to engage with his health care team. As I am advocating for him, I hope that I’m teaching him how to take his place at this table as an equal. He ultimately needs to learn how to (courteously) demand his role the health care team. He needs to take responsibility for his own health care journey.
So, to summarize, these were my very practical ePatient goals for this last appointment:

• succinctly and accurately go over the patterns that my family had noticed over the past several months
• back-track those patterns to the last several years
• check our assumptions & communicate our theory about what that means to his diagnostic journey without coming across as self-diagnosing
• communicate our wishes for the next steps in terms of health care expectations
• listen/integrate the doctor’s expertise about how to use that information
• model for my son how to do all this as a strong advocate

Imagine this was a specialist who was not necessarily open to an equal dialogue.
Imagine I was someone less comfortable or practiced with advocating.
Imagine English wasn’t my first language.

Even with every advantage it was a situation fraught with fear, uncertainty and a history of an imperfect system. A situation where a foot stepped in the wrong place could have dire consequences.

And that is why putting theory into practice is not a smooth transition. We can talk all we want about how things should go. We can go armed into an appointment with lists, and notepads, and intent to be equals. But all that can be derailed so easily by patronizing attitudes, a system that wants patients to fit in its boxes, by intimidation and fear.

A systemic change needs to happen where equality in the doctor’s office is the norm, not the exception, and has been so from day one. I am hoping that my son’s experience with a lifetime as an engaged patient will make this all easier for him. That he won’t carry the same baggage into these conversations. I guess we will have to wait and see how that turns out for him.

Oh, and as for that appointment. It went really well. It went really well because our doctor listened and because we spoke. I later realized that in my emotional state, I was not clear about all of our information. Happily, I was able to email his doctor to clarify what we had observed. Our channels of communication let us dialogue out a plan and we are moving forward. We still don’t have any answers, but at least we have a plan. And that’s something, anyway.