By Isabel Jordan
Isabel Jordan was the Embedded Patient Partner for Healthcare Excellence Canada from November 2019 - March 2021
My sense of time has shifted in the past year. I’ve divided things up into the “before-times,” “pre-pandemic,” the “between-times” where we find ourselves now, and the “after-times” to come when we’ll have put the between times behind us.
I came to Healthcare Excellence Canada (formerly the Canadian Foundation for Healthcare Improvement) in the “before-times,” and there were assumptions of how my work as embedded patient partner would proceed. My lived experience as a patient as well as my understanding of patient partnership would inform my role in coaching, mentoring and creating resources for HEC to help foster better engagement practices. And then the pandemic came. And then so much changed.
We were suddenly thrust into a world of living virtually. We were communicating with our colleagues, patient partners, our kids’ schools, our healthcare providers, and even our families in ways that were new and for many, unfamiliar. Our homes became our offices, our schools, our recreation areas. For far too many, the pipeline for virtual connection either didn’t (and still doesn’t) reach their homes or was an economic barrier. The digital divide came into stark reality as those who had access to high-speed, dependable internet connections fared, and continue to fare, so much better than those who didn’t.
It was against this backdrop that the work I’m passionate about had to “pivot.” A word, that now in its overuse for the changes in our lives creates a visceral, unpleasant response in my body.
Like everyone else, I had to “pivot” (shudder) my work in patient engagement into the virtual space. Gone were the opportunities to meet folks in-person, have round tables, workshops and in-person meetings. Like everything else in my life, interactions were through the computer screen, through Zoom, through Teams, and through whatever online platform worked. I’d like to say I instinctively knew exactly how to make online engagement opportunities safe and authentic, that I automatically knew how “do engagement” through a screen. But that would be a lie.
What I knew, was that as we went along, something was missing. Something was different – both as a person who created engagement opportunities and as patient partner who contributed her own lived experience to healthcare research. Honestly, it felt like we were going through the motions but not quite sure where we were going.
I feel so very fortunate that in my own informal community of practice we began to dialogue about exactly what was different now that we were doing this work virtually. What was missing? Some themes began to emerge.
The basics of the work remained the same. Patient partnership, patient engagement is built around relationship building and trust. Where trust-based relationships existed before the pandemic, it was much easier to transition to the virtual space. It could certainly be awkward, but connections were already forged. New opportunities were different. Fresh relationships needed new ways to create that trust and transparency. We were treating meetings for patient engagement the same way we were treating any other meetings and that was a mistake. We were forgetting that for patient partners, these weren’t just “any meeting.” The same power dynamics, possibility of evoking trauma, and the need for emotional safety has the chance of becoming magnified on a virtual platform. The trick, the opportunity, is in finding ways to build trust, build relationships, build clarity in a virtual medium. So, how do we do this?
I don’t claim to have the answers – only some ideas of what works for me. As with so many things, it takes time and intention to create moments of connection in the artificial world of online connections. The details of how to do that will be specific to the engagement opportunity and to the individual. When I recall the “before-times” we had those human moments of connection while getting coffee, hanging our coats, eating a meal together where we could naturally forge the bonds of community and trust. In these unplanned moments we could get to know each other as people before the necessity of opening our trauma for the benefit of the project. These moments of connection could make sharing our story, if not easier, perhaps at least more tolerable.
The question now is, how do we build these moments of connection into the work online? I believe the first step is to recognize that it can be more difficult to do this instinctively in an online meeting. Instead, we need to ensure time to build trust and relationships, whether it’s get-to-know-you calls, meet-and-greet coffee connections over video, or whatever kind of informal setting that allows folks to forge a connection that isn’t directly related to sharing their lived experience or “doing the work.” These “non-work” meetings make the possibility of the “work meetings” happen in a better, safer way. Budgeting time for this, in my opinion, is as important as budgeting funds for expenses and patient partner compensation.
Part of this slowing down and intentionality is remembering who we are engaging with. Who is around the virtual table? Who has barriers to participating virtually and who has been enabled by the virtual connection. There are those who have seen this move to virtual space as an incredible opportunity – in-person meetings have been impossible to many of us in the disability space. The switch to virtual has allowed many of us to participate where it simply wasn’t possible before. Honestly, there is a fear that in the “after-times” a switch completely back to in-person will see many of us excluded once again. But of course, there is the flip side, while being remote is an enabler for some, working virtually is a barrier for others. How do we resolve this?
The only way we can figure this is out is by continuing to work with the patient partners who have seen engagement before and during the pandemic – folks who have seen the switch to exclusive online engagement, so we can continue to work and learn together. That way we can learn not only how to engage better, but how we can take the best of online engagement and incorporate it into the work that’s done in the future. There’s an opportunity here – the opportunity to include more voices in a safer and more authentic way. We just need to take the time to do it well.