Bringing the patient voice into clinical research: The EPCAT III trial experience

Yeah, I guess as you both mentioned, as researchers, we have our own timelines.

We know that these things-

Mm

... forever, the publications take forever, so it's great to have that incentive of y- you must get it done now and keep going.

[laughs] So thank you very much, Carol, for incentivizing that.

And you've been involved in other research projects beyond the EPCAT 3, Carol, and you also have a leadership position with CanVector.

What have you learned about researchers [laughs] in terms of what they can do to make individuals with lived experience feel more comfortable to contribute and feel genuinely valued and influential when they come to participate in research?

The big question, 'cause not everyone is the same.

In this particular instance, Sudeep and I just like each other.

We meet, bump into each other from time to time in person, and it was easy to fit into this, even given that there were, as Sudeep pointed out, all of the orthopedic surgeons around the table who had their own objectives, their own agendas, their own background that might not have involved seeing patients as partners in their research projects.

It may have just involved seeing patients as objects of their skill to do the hip and knee replacements.

One of the challenges still is the acceptance of patient partners as equal partners.

Now, CanVector has done a superb job in terms of creating its patient partner platform, accepting standards within CanVector that patient partners bring to the table, whether it's informed consent forms, whether it's other kinds of things, whether it's glossaries.

There's a deep and useful commitment on the part of CanVector to manage and support the patient partner platform, and that's terrific.

But I know that many of the virtual rooms that I sit in with members of other steering committees on other projects don't have that leadership and don't have that experience and don't have that knowledge to openly welcome the views of patients around the table who are there as patient partners.

So that is daunting for patients.

Not everybody has been there for as long as I have.

And although we try to do some mentoring ourselves within our patient partner platform, everybody comes with their own set of apprehensions and their own, "Can I do this?" And their own, "How do I fit?" It, it's a constant reminder to us that we have to do as well as we can to incorporate the views of patients.

Sudeep had what, in retrospect, looks like a pretty simple thing.

You know, you put an agenda item on every meeting.

But again, I don't see that very often.

In fact, I may have only seen it in EPCAT 3.

So there's room for improvement.

There's room for greater collaboration.

There's room for mutual respect and trust, and there's a lot of room in these meetings and forums and research discussions for listening.