Patient Engagement: You’re Doing it Wrong

Buckle up kiddos. This may be a bumpy ride. Generally on here, I try to share stories of how to do things right. Show leadership by example. Model change, if you will. And I’ve tried to let this one go. Let it slide. Chalk it up to experience. But, my friends, I’ve been had. With all my talk (and those who know me, have heard me) of being savvy about when to engage, and when to pass things up, I let my excitement for a project lead me into the lion’s den. Or perhaps just to the den of apathy. Probably more the latter then the former.

So let me share with you my story of Patient Engagement: You’re Doing it Wrong. If you’re in any kind of position where you’re engaging patients and you see any echoes of what you’ve done here. Take this time to reflect. If you’re a patient or a caregiver, STOP. DROP. AND ROLL. No. Wait. That’s something else, altogether. If you’re one of us, know that we all get sucked in sometimes. And it’s not our fault. It comes from the best place in our heart. And every time, it feels awful.

So, on to the story. Are you buckled in?

Being an Experienced Patient Advocate™ I was flattered to be approached by clinician project managers to create fundraising document for a new hospital-wide initiative. I was wary, because I haven’t had great engagement experiences with this facility. But generally, when dealing with individual clinicians, their hearts are in the right place and we can see eye to eye. But what sealed the deal, is the initiative was around an issue that meant a lot (everything) to me. An issue that had created trauma for my son, for me and that I could see was creating trauma for others. It killed me that it wasn’t being properly dealt with. The fact that insiders wanted the funds to deal with it in a systemic, hospital wide way, was absolutely music to my ears. And they were actually reaching out to a parent. I wanted in. I wanted in to get them to bring in more parents. And patients. Systemic change ---- muah-ha-ha!!!

It was a good meeting. It was a hard meeting. I told our story. Illustrated why we had problems. How we had problems. Why they needed diversity represented. Honestly, every time I trot out our story to clinicians, it cuts. It can’t help but cut. But it is so important. I read a document. I provided edits. Was on an email chain. I worked. For free. But that’s ok. It was profoundly important to me. The change it could potentially make for patients and families would be worth it.

And then off it went. And I waited to see what would happen. For months. And of course, life moved on. Several months later, my patience ran out. And I emailed the project managers, and the patient experience representative on the project to ask for a status report on funding, on the project. And do you know what they told me? Me, the only patient/caregiver on the project? Well if you guessed ‘nothing’ because nobody respected me enough as a colleague to bother replying to my email, you’ve guessed right.

Nothing. Nada. Rien. I wouldn’t dream of responding to a business colleague or volunteer like that. Or not responding, I guess? The best case scenario here is that it went nowhere and the funding didn’t come through. About which I still should have been informed. The very least you do with a patient partner is treat them like a team member. That experience gave me the feeling of ‘I wash my hands of you’. I am not here to chase anybody down to be a member of their club. I have better things to do, more important things today, and more self-respect than that.

I was done. I moved on. Because I am fortunate to work with some other fantastic groups that understand patient partnership.

Or so I thought.

Two months later I get a mail-merge style email obviously going to some list, asking if I’d like to be on a steering committee for the very project I thought I was already a part of. I’m sorry, what? How was I not included already on this? How was my previous email not answered? How do you ignore the only patient you included before and told that you were going to include in future planning? How was I mined for information and ideas and then dumped like yesterday’s news?

So of course I asked. And again I didn’t get any answers. I got an email full of platitudes and nothing else.

So what’s the object lesson here for people ‘engaging’ with patients?

Stop engaging patients if you’re not actually ready to partner with them. Stop using our stories to get money for your research and your clinical programs. Our stories belong to us. If you’re going to use me, then I’d better be making decisions with you.

What’s the object lesson for me?

My initial instincts were right. I shouldn’t have engaged with this group. I was left feeling used, vulnerable and stupid for thinking things would work out differently. I traded my family’s story for what, exactly? I don’t know, because I was never informed. In fact, I remember telling them this very thing in our meeting. Engaging patients means keeping us informed of the results of engagement. What happened to me is harmful. It took me from my home, away from my family, put me in a place of vulnerability, and put me in a place where I wasn’t respected.

The result: I won’t engage with this group again. And I’ll warn others off. And I’ll generally be more wary of engagement opportunities. This does nothing to advance the cause of healthcare improvement. I’m guessing this is the opposite effect of the initial initiative.

Harm was done.

Another plea for easily accessible health records...

I’m rallying the kids right now to hurry up and get out the door – wish me luck. Today is an exciting day. We are making the one and a half hour trek to the Children’s hospital to go see a sparkly-new specialist to get her perspective on our son’s undiagnosed disorder.

I don’t want to get my hopes up that anything new will come of this – but I do want to maximize our chances of getting the most out of this wonderful doctor. To that end, I went down the rabbit hole, the vortex, of what we all call The Binder. Woefully incomplete, too late in starting it, it is where I keep our version of his medical records, his OT, PT, speech pathology and many, more reportss; whatever I can put in there is there. I do this because in 13 years of acute and chronic medical caregiving, I can’t remember it all. It is where I thought I might be able to research a summary of all his symptoms, his history and his milestones. It is my one best hope of being able to compile and summarize his life for the new doctor.

I wish it were more complete. In the beginning – those first several years – I didn’t know I’d need these records. I didn’t know I’d be here 13 years later, still with no answers. 13 years ago I had a naïve faith in The System. I had no idea that I’d need to keep my own records. I had no idea of what a pain it was to track down all that information later. Hell, I had no idea that I’d need any of that information later. Not for the first time I wish I had the ability to easily go and find those missing reports to fill in those blanks.

Seeing someone new means giving her our history, his history. It’s been a long 13 years with a lot of information. It’s all there in the records – his milestones, his symptoms. Unfortunately, I have no easy access to that history. To be honest, we, the family, are the ones who can tease apart the information and give it context. We are the ones who can lay it out for the doctor to analyze with her perspective. Together, as a team, we have a chance for answers. But first we need access. We NEED access. Where are our accessible electronic health records?

I had no idea that 13 years later I’d be pinning my hopes (hopes, please get crammed back down there, you have no place out here), on a new doctor, a new perspective. But I need to get her the best information I have. I have to rely on the spotty records I have, the best that I can recall. This isn’t good enough for him. We can do better.

So here’s what I’ve come to after hours of pouring through the information I do have and writing up the summary I came up with.

1.     Our version of The Binder has a LOT of holes. We are missing more than I thought and I find that very distressing. I need a plan to fill those holes.

2.     After writing our summary, I realize  that we minimize a lot of what our son has gone through. I’m not sure if that’s good or bad. Maybe a bit of both? We don’t tend to dwell on the negative, but maybe we should celebrate more how much he/we accomplish in the face of difficulty.

3.     Going through The Binder once in a while is probably a good thing to lend perspective and ensure quality. Some of those reports – lets just say ensuring accuracy might be a goal for the future.

4.     I don’t want  access to my electronic health records. I need access to our health records. We all know that it will lead to better care for my son, my family. And I know it will lead to better care for others.

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.