Thursday, 15 February 2018

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.

11 comments:

  1. This is a strong post that is a must read for 'patient engagement' people everywhere. Patient engagement is not about managing a database and getting bodies around a boardroom table. Isabel, as you eloquently point out, patients are people - who often dedicate their own time to volunteer because they want to make positive change in the world. How patient engagement people can NOT honour that is beyond me. As you've often said Isabel, much of this is about courtesy and manners (and common sense about how to treat people). If I was a patient engagement person involved with this debacle, I'd hang my head in shame (and then I'd profusely apologize). Thank you for sharing your story and wisdom with us...I hope it gets shared widely in the health care world.

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    1. Thanks for your thoughtful commentary Sue. You’re so right. So much should just come back to simple manners, courtesy, and respect. Somehow, they’ve been left behind in this hierarchical, silo’d world.

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    2. When Time has your writings as Breaking News in med comes on and then you realize what a coincidence it is. Isaacson was ME. Perhaps ME forgot my writings were in hands of Time? Or went by telepathy to??? It's a Miracle; either by man or God. The NYU Professor finds pregnant women; the lowly patient finds enzymes in saliva; When Is the Kicker! Worse yet is a Dr. med researcher (perhaps even NIAID Director NIH) who knows and wouldn't contact patient IMHO. Yes Isabel Jordan, it's a hierarchical silo'd world.

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  2. There are many engagement stories like this - they are too common. Sometimes it can feel like being strip mined for your ideas, and then abandoned when people assume that the story you told is your only use. We don't tell stories under the guise of engagement just for an 'emotional kick-off' to a project. We are using them to help further change in the health care system by using narrative - qualitative DATA as a complement for the quantitative research that has trouble seeing the heart.

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    1. "strip mined for your ideas" I really like the way you put that. I mean, I don't like it, but you know what I mean. It does feel like that when it's done badly. Our stories can fuel change, but our participation needs to be partnership. Or that's it, I'm out.

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  3. Ugh. I need a shower after reading this. I'm so sorry this happened to you, but I'm really glad you wrote about it, because it's happened to me too. And lots of other patients/families I know. It hurts every damned time. Thank you for sharing.

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    1. So many people are commenting (privately and publicly) that this has happened to them as well. It was one of my motivations for pushing 'publish'. None of us should feel alone in it.

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  4. I'm so sorry that this was your experience. Similarly, I was approached by a patient advocacy organization that I respect to lend my story. We also went back and forth and I was promised the opportunity to contribute meaningfully to their efforts on patient engagement and patient safety. Instead, I my story was stolen for marketing and PR purposes and when I followed-up, I was given the usual: Sometime in the future... we are so busy right now - condescending rhetoric. Because of course, those of us who are personally committed to patient engagement and patient safety, who work and are raising families have all the expendable, free time in the world!

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    1. I'm so sorry this happened. Too many of these stories.. We are not their stories to use. Somehow, this script has to be flipped.

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  5. I am sorry this happened to you. We in industry are not, as a whole, particularly good at patient engagement - I remember writing about this same issue 3 years ago, concerned that too many companies would do just enough to check a box, and not enough to make any sort of meaningful change.

    Patients are people first, and should be treated with respect and thoughtfulness. However, that's the _bare minimum_ standard we should hold ourselves to. The patients that we bring in to help us with our projects are, in fact, experts - they have far superior insights into their experience than anyone else on the team - and should be treated exactly the same as other experts. This means bringing them in early in the process, compensating them for their time and effort, and integrating them into ongoing follow-up.

    I hope you have many opportunities to continue your work with partners who can manage to grasp these basic principles.

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    1. Thanks for commenting Paul. My hope is that others think like you, and realize that co-creation is how we're going to create better answers, together. Walking together, with respect, is how we're going find our ways towards answers.

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