Importance of Highlighting Patient Voices, Workforce Wellbeing, & Health Literacy During & After the Pandemic

In the latest episode of Impetus Digital‘s Fireside Chat, we explored the importance of health literacy, patient voices, and workforce wellbeing during COVID-19 with Deborah Collyar (Patient Advocates in Research), Cathryn Gunther (Population Health Alliance), and Catina O’Leary (Health Literacy Media).

Here is a sneak peek of our conversation:

Q: Can you talk a little bit about what you have seen as being the evolution of how we are involving patients in the new way that we are discovering new drugs?

Deborah Collyar: I think we’re still in the infancy stage as far as clinical trial sponsors are concerned, but there is movement in the right direction. What I would say, are a couple of things: COVID has taught us a lot. There are a lot of things that we need to keep that are good about what we’ve learned during the COVID-19 period. I am a big believer that we need to keep many of the changes that happened “overnight,” which wasn’t really overnight but happened quickly, especially in the research sense of the word.

A lot of things that are happening are things that we’ve been asking for and pushing for, for years, because they’re better for patients. Being able to have more localized care, or procedures, or tests done. You don’t always have to go to the fancy Medical Center. That’s a major barrier for a lot of people not just in the rural areas but actually in urban areas as well. Things like that and being able to have home monitors, some of the technology that can be used.

The thing I keep reminding everyone about the technology is–there are probably a few different concepts that would be important to remember, if you don’t remember anything else from this conversation–one, is context. Catina brought that up, we’ve got to put information in context for people, whether it’s in print, talking, audio, or video, whatever it is. Number two, we have to remember to use “WIIFP” first before product and regulatory focus. “WIIFP” is a marketing concept that I’ve kind of enhanced. Instead of “WIIFM,” which is “What’s In It For Me?”, it’s “WIIFP,” “What’s In It For Patients?”.

If we have all this whiz-bang new technology, digital monitors, and all that that we can put into clinical trials, woohoo. The message that comes across too often is “Oh, this is a way we can get more from you, trial participants.” Notice I don’t use the “S” word known as “subject.” The trial participants are participating and contributing for a reason. Sometimes it’s personal, sometimes it’s for other people, often it’s for both. They need to get something out of the technology as well.

The good news is, there’s a lot that can be given back to the trial participants, but we have to think about it that way first. Then, they will be more receptive to using some of that technology and making things happen. We have to think again from the trial participants’ standpoint, “what is it that we can do to make it easier for them to participate in the study?” What can we do to make it easier for the site to think about this study, to talk to their potential participants about it, and then to keep people in the study?

There are different words that we use, things like “adherence” and “compliance,” or “retention” even. From a patient standpoint, it’s an endurance test. Again, if you think about how that changes your mindset and approach the clinical trial, it can completely change the way we communicate with people, the way we think about designing the study from the beginning, which is very important.

I think another thing that COVID is teaching us that I haven’t heard a lot of people think or talk about is: it’s really important for us in the era of precision medicine to actually do what we say we’re doing and learn which subpopulations are going to do better with certain alternatives than others. A good example is: we have two mRNA vaccines already approved in the US. There are other ones coming down the pipe that work differently. We just heard about the more recent one that looks like it has less effectiveness. Of course, the medical community is saying, “Why would anybody want that?” Well, there are a lot of people who aren’t going to be able to take the first two, the type of mRNA vaccine, or it might not work for them as well.

Again, we need to learn why are certain people having lung issues, why are certain people having more diabetes, why are they having heart conditions? Not everybody is the same and population health actually knows that. I think that is where the spectrum that Cathryn talked about is so important. We have to go from understanding the population that we want to start with. But then, how do we start to piece out the information that’s useful for smaller and smaller groups of people and, hopefully, for individuals then?

The most important question always is “why?” Why are we doing this, what’s in it for patients, and why should they consider our clinical trials?

For more of our discussion, you can watch the whole Fireside Chat with Deborah Collyar, Cathryn Gunther, and Catina O’Leary, or listen to the podcast version, below.

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