Reducing the Emotional and Logistical Burdens of Patient Participation


In this Applied Clinical Trials video interview, Julia Lakeland, Chief Product Officer, uMotif, discusses what kinds of technologies can be developed to improve patient engagement while still maintaining data integrity.

Considering the potential benefits and burdens experienced by patients in clinical trials — something you have first-hand experience with —what kinds of technologies can be developed to improve patient engagement and reduce the emotional and logistical burdens of participation—while maintaining data integrity and validity?

I think in today's day and age, it is even more important than ever before that we put the voice of the patient and the experiences of the patient at the center of what we're doing. And rightly so I do often talk firsthand about my own experience as a parent, and a caregiver for my daughter, who I openly say, is type one diabetic. But actually, when we when you look at the industry that we are part of, and the purpose of why we're here, clearly, we want to develop new medicines and new technologies that improve, improve health, and improve well-being. And in order for us to do that, we have to have the data. So, the data has to be scientifically and clinically meaningful. There's very little that there's no dispute there. But the data is only as good enough as what data you are able to capture. So therefore, engagement and having a high level of interactions with the participant on the patient is absolutely paramount.

When I always say when we're looking at developing new technology, these are, you know, a new study a new study protocol, an ecosystem, whatever the Tech is a sensor a wearable, for example, putting the patient's experience at the forefront of your design and development process is really, really important. And actually, understanding and minimizing the burden that the patient goes through is key. Because whatever solution is presented, has to be easy to use. And it also has to benefit the patient and the patient's caregiver for example. And over the last 10 years, I have used a plethora my daughter and I we've used so many different CGM insulin pumps, pens, you know, and, and some of them, they will capture always, they were always captured reliable data, there was no disputing that they the validation of the verification of the date, so it is always there. But actually, we have noticed that the experience for the patient is varies, it varies considerably. And so, understanding that the technology has to be easy to use, and being easy to use has a different connotation associated dependent for who the user is, you know, if you're a young patient, if you're an elderly patient, you're going to have very different requirements and expectations about how the technology works. But ultimately, I think when we, when we think about how we are designing the technology and what kind of technologies are available to improve engagement, specifically, whilst minimizing all of the day-to-day burden that comes with it, we absolutely have to have a deep understanding and a deep empathy about the challenges that that patient bases every single day in living with their condition.

Once we've understood those problems, and actually worked with patient advocacy groups, just speaking with general population, and having that, that that level of empathy, you can understand that problem work to improve the situation and actually, in addressing the problem, engagement increases by nature. So, it always, always sounds quite easy to kind of say, oh, let's put the patient first. But you do have to then work within the boundaries of what the technology can do and sometimes technology can't fix everything, you know, so you have to recognize that there is an individual l won't accept sometimes the boundaries of what technologies can and cannot deliver. But that said, when you look at the world that we're part of, and again, I talk firsthand about CGM and insulin pumps and, and devices, mobile phone devices, as, as an individual, when I look at the life My daughter has now compared to 10 years ago, and the independence he has, and, and the granularity of the data, and her lifestyle and everything that's scientifically support, improvement in her overall well-being. That's then when I go, this is absolutely amazing. Because, you know, we're on a journey, things are never perfect. We are human, after all.

But collectively, as a community, this is what we do, we work to make life better. And we work to improve things, and, and ultimately putting the patient right at the front understanding and empathizing with them. That brings about the rewards. And of course, you know, then, obviously, just looping that back, as I said, data is only as good as the data that you can capture. So, I think really, for me, having that, that understanding of the patient's experiences, capturing that data, making sure that life is easy to work with. And then on the backend within the system, capturing that data, validating that data, and making sure that it is suitable for clinical research purposes. That end-to-end spectrum is really what we're targeting.

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