The Patient Engagement Studio: What is it & Why does it Matter?
Join us as we sit down with Dr. Ann Blair Kennedy, the director of the Patient Engagement Studio (PES) and patient expert, Pam Evans , to discuss what the PES is, why it is important, and how you can get involved!
Kendall Givens-Little (00:18):
Hello and welcome to our fourth episode of Just What the Doctor Ordered, the University of South Carolina School of Medicine Greenville's podcast, where we discuss relevant news you can use from the upstate. I'm your host, Kendall Givens-Little. In this episode, we'll be sitting down with Dr. Ann Blair Kennedy, the director of the University of South Carolina's Patient Engagement Studio, to discuss the studio, what it is, who benefits from it, and how the local community of Greenville can get involved. Dr. Kennedy will be joined by patient expert, Pam Evans, to speak about her experiences working with the studio. Welcome, ladies.
Dr. Ann Blair Kennedy (00:54):
Hi, thanks so much for having us here.
Pam Evans (00:55):
Hi, thank you.
Kendall Givens-Little (00:55):
Most definitely. We're excited to have you here. So Dr. Kennedy, tell me a little bit about the Patient Engagement Studio. I've been hearing a lot about this P-E-S, that's what everyone's been calling it. What exactly is the Patient Engagement Studio?
Dr. Ann Blair Kennedy (01:08):
Our whole purpose with the Patient Engagement Studio is to get patients' perspectives in research. So bringing in the stakeholder who is supposed to benefit from the research, actually helping them design and even help look at data, and actually get the information out about the research when the researchers are done with it.
Kendall Givens-Little (01:28):
Okay. So I guess my next question, why is it important to hear from a patient's perspective?
Dr. Ann Blair Kennedy (01:34):
That's a really good question. When we look at how long it takes research to get from the microscope level, doing it in a lab, into a clinical guideline, it looks to be about 17 years, the last time I looked at the research around that. What we're hoping to do is one, shorten that timeframe, so that when those new findings come out, we can actually get that information into practice quicker. So that's one thing. The other thing is, is that when we include patients whose diseases are being studied, whose conditions are part of the research, they know more about it, a lot of times, at least how it is to live with it than the researchers. So if we can include them in helping us figure out how to do better research, then the research should be better too.
Kendall Givens-Little (02:22):
Okay. Well, with that being said, Ms. Evans, you are considered what they call a patient expert. So explain to us, what exactly is a patient expert?
Pam Evans (02:33):
It was a new term to me. I think [Matt Hudson 00:02:37] was the one who coined it. We would introduce ourselves as patients, and he said, "Well, you're actually patient experts." As Dr. Kennedy said, part of that equation is that many of us, well, we all have had experience as patients. Some of us have chronic conditions. Some of us have had health conditions that have upended our world, either directly or through somebody that we've been a caregiver for. So we have that personal experience of being a patient. We also bring to it, each of us in our own unique ways, brings a broader perspective so that we're not looking at the research we're considering or giving input on just from our personal experience, but also from a broader experience. We have a I think pretty diverse group. We have a lot of different backgrounds. We have an engineer, we have a communications expert. We have teachers, we have high school students.
Dr. Ann Blair Kennedy (03:38):
High school students.
Kendall Givens-Little (03:39):
Very diverse.
Pam Evans (03:41):
It's interesting how we hit on so many things that I would suppose researchers maybe aren't even thinking about. We have input that makes us always sure that we're thinking about underserved populations, or populations that might not have the confidence or the educational background to even know what questions to ask. We've got people who are very systems oriented, who will look at the process, and does that make sense to a patient brain? So I think particularly in the main studio, we're looking at lots of different things. We bring, again, that personal experience perspective, but then that broader perspective that leads us to ask questions that maybe we hadn't thought about.
Kendall Givens-Little (04:34):
Okay. So take me into a Patient Engagement Studio session, a day in the life of a patient expert. So as you're going through the program, what exactly is it like?
Pam Evans (04:45):
What happens?
Kendall Givens-Little (04:45):
Yes, ma'am. What happens with that?
Pam Evans (04:47):
Well, Dr. Kennedy has, I won't say perfected, because nothing's ever perfected, but we have a good system. The researcher presents to her in a particular format what it is they're going to present, and what questions specifically they hope that we'll be able to help them with.
Kendall Givens-Little (05:06):
So wait a minute, they actually listen to what you have to say?
Pam Evans (05:09):
They do listen to what we have to say.
Dr. Ann Blair Kennedy (05:11):
They do. A lot.
Kendall Givens-Little (05:12):
Okay.
Dr. Ann Blair Kennedy (05:13):
Most of the time. Every now and then, maybe not.
Pam Evans (05:15):
So we have the materials to look at ahead of time, and we know what the presentation's going to be, and that gives us an opportunity to formulate some of our own questions. So they do their presentation, and we're quiet. We listen, and then we know some of the questions that they want us to address. We ask our questions, we have a lot of back and forth. Usually there's some aha moments. It might be on our end, where it's information we never even knew existed, like a learning opportunity, which is part of what makes it cool. Or it may be the researcher going, "I never thought of that." So yeah, it's very much back and forth. I think if it were a situation where we didn't feel listened to, and we didn't feel like our input was relevant and valued, we probably wouldn't come back.
Kendall Givens-Little (06:08):
Wow. I just think it's extraordinary that there's a place where you could go, where patients can actually give advice based on what they're actually feeling and personally experiencing. I think a lot of folks don't think that they have the capacity, so to speak, to speak to a doctor and say, "Hey, this is going on because we're wired to think the doctor's the expert." So to hear the term patient expert just completely changed as my train of thought on that. So, Dr. Kennedy, what exactly is your role, and how did you get involved with this?
Dr. Ann Blair Kennedy (06:45):
So my role as the director is to be that bridge between our patients and our researchers. So I'm the one who will work and train the researchers to better present their material, and to get the most out of their meetings with the patient experts, and then I make sure that the patient experts are prepared and confident enough to give their feedback back to the researchers. So the way I got here is this little bit strange of even getting to medical school. I have a little bit of an odd story where I actually have my first two degrees, my bachelor's and my master's, are in theater.
Kendall Givens-Little (07:26):
Wow.
Dr. Ann Blair Kennedy (07:26):
Yes, theater. In directing, to be exact. I taught at the undergraduate level for a little while. I taught public speaking, and theater and film appreciation, and then I became a massage therapist and I had been a massage therapist for over 20 years.
Kendall Givens-Little (07:42):
Okay, that's a bit of a right turn.
Dr. Ann Blair Kennedy (07:46):
A little bit, but I happened to get my first professional massage and went, "That is fantastic. I think I would like to do that and make people feel that good."
Kendall Givens-Little (07:54):
Awesome.
Dr. Ann Blair Kennedy (07:54):
So I had a great, very thriving practice down in [Lawrence County 00:07:58], and it was great. I started looking at research, and I wanted to be an evidence-based practice. I was reading all this research and I'm looking at it going, |That's not how we do things in practice. I can't use this research, because that's not how it works." There'd be these really strict protocol, and that just wasn't how massage therapy is actually done. I started to look at it a little bit deeper, realizing, well, massage therapists weren't included in the design, in the implementation of the research. I'm like, "Well, that's probably a problem." I was also involved in my professional associations, started having conversations, and so then I decided to go back and get my doctorate at the ripe old age of 39. In the fall, I started when I turned 40. So I went back into it, got a doctorate of public health and health prevention education and behavior, with the sole purpose of getting stakeholders' perspectives and research. That was my whole reason for going back to school.
Kendall Givens-Little (08:56):
So there's more of a personal connection to this program for you, seeing that you have a direct correlation to understanding that a patient's input is needed in order to move forward.
Dr. Ann Blair Kennedy (09:09):
Well, I'm going to pull you back. I didn't think about the patient at the time. I was thinking about me as the massage therapist. I hadn't even gotten to that point of the patient yet, and then I came here to the School of Medicine as a postdoc in the human performance lab with Jennifer Trilk. But it just so happened that I started the exact same month that the Patient Engagement Studio started. So then as I was getting my feet wet here as a postdoc, Peggy Wagner came to my cubicle right across the hall here and said, "Hey, I hear you're a qualitative researcher. I'm starting this thing up. Do you think you want to come?" I went into the very first meeting of the studio, and two years later, I was the director.
Kendall Givens-Little (09:51):
Wow. Awesome. Well, it sounds like that position was made just for you. You seem like you have a personal connection, I'm looking at the connection that you and Ms. Evans have. So Ms. Evans, I'm going to segue over to you. How exactly did you become a patient expert? Was this something that you were interested in, or how did you hear about the Patient Engagement Studio?
Pam Evans (10:10):
I knew nothing about it. I have a friend who works in the marketing department here at the health system, and I think Peggy Wagner, the founding director, had reached out to just, again, trying to cast the net widely, to get different kinds of people with different kinds of experiences. I think my name was passed along. So she reached out and she said, "It's going to be really hard for me to explain to you exactly what it is we're doing, but here it is, sort of." She said, "We're figuring it out as we go. There are models that we're looking at, and we'll train ourselves on those models, but be part of this team figuring it out." So I was game for that. It was at a time that I was ready for something new and different.
Pam Evans (11:01):
So that's really how I came on board. It just so happened that it coincided with a time in my life that I had time, but also that I had had some recent personal medical experience as a patient that rocked my world a little bit, and gave me a new perspective I didn't necessarily want to have, but I had it. So it was a very serendipitous, I'm in this new place and I can put that to good use.
Kendall Givens-Little (11:31):
Okay. Well, you've been a part of the Patient Engagement Studio for some time. I think you were one of the first patients to get involved with it. How has it benefited you? What have you gained from being a part of the Patient Engagement Studio?
Pam Evans (11:46):
On a very personal level, it is valued what I can bring. My skillset may not be tangible, but I do have a skillset, and I feel like I am challenged to utilize that skillset to make our process go better. There are others who have other skills that they bring, so that's been validating. I've had the opportunity to learn a whole lot that I didn't know about. Different projects that we've had come in, you have to have a baseline of information to even know what you're hearing about. So that's been interesting. Really, I think this group has, I don't want to paint a picture like we're all best friends, but there are people I wouldn't otherwise know, and I think we're better together because of our differences. It's cool to be a part of something like that.
Dr. Ann Blair Kennedy (12:51):
I'm going to remind you of the other thing that you brought up in one of our meetings about how it gave you more confidence in a doctor's appointment.
Kendall Givens-Little (12:57):
She's going to put you on the spot.
Dr. Ann Blair Kennedy (12:58):
I am. Do you remember us talking about that?
Pam Evans (13:00):
Yeah, yeah. To your point earlier, you're a patient, you think the doctor knows everything. Just from looking at it through this lens as a patient, I am entitled and empowered to ask questions, to push back, to say, "Give me my options," or "I don't understand what you just said to me. Can you say it in language I can hear?" So on a personal level, yeah. It has.
Kendall Givens-Little (13:30):
So let me ask you this question. So it seems as if the Patient Engagement Studio has built your confidence a bit in speaking with medical professionals. So how has this either helped or dampened your relationship with your personal doctor? Has it been a negative or a positive effect?
Pam Evans (13:44):
I think it's been very positive. I am fortunate, knock on wood, I feel a lot of confidence in my healthcare providers and I think they know that I'm not going to just sit there and go yes sir or yes ma'am. I feel like they approach me with respect, because I'm going to say, "Well, why do I have to do that? I don't want to do that." I have one doctor where I've said, "Well, maybe I just don't even have that anymore." She went, "Okay. It doesn't work that way." I said, "I know it doesn't work that way, but it's what I'm thinking." So I don't know. I feel a little freer to say what I'm thinking or say what I'm feeling, and probably have a better personal connection with them.
Kendall Givens-Little (14:33):
Okay. Dr. Kennedy, if you could give us a little bit more insight, why is that important from a researcher or physician's point of view to hear what a patient has to say?
Dr. Ann Blair Kennedy (14:46):
Well, if we're not asking the questions in our research that matter to patients, then they can't use the information. So that is where it comes down to for me, and it also from when I was in my massage therapy practice. So one of the things I will talk to people about often is when I was in practice, people would come to me and yeah, they would talk about pain, but they would also talk more about function. So if I'm a researcher and I think, "Yes, I need to reduce pain in this population who has shoulder problems." Well, the patients might come back and say, "Okay, yes, pain reduction is important, but I really just want to play with my grandkids." Or, "I want to be able to tie my shoes or put on my bra in a certain way so that it's not as difficult as it was before." So that might be more important to them than just reducing pain.
Dr. Ann Blair Kennedy (15:40):
So that's one place I come to. We have to think about what the patients are actually interested in finding out, so then they can apply that knowledge themselves. And also, the physicians and researchers can apply it in our research in the future. Pam Evans here also has changed me as a researcher. I use her in particular, because it was a very salient moment in a meeting for me, when another group was presenting and they were doing some measurement. They were just trying to see if people were getting worse over time.
Pam Evans (16:13):
It was cognitive function.
Dr. Ann Blair Kennedy (16:15):
It was cognitive function. It was. It was cognitive function. I didn't want to specifically call out the study, because they might be listening.
Pam Evans (16:22):
I'm sorry. But it stuck with us.
Dr. Ann Blair Kennedy (16:24):
It did.
Kendall Givens-Little (16:25):
You forgot you got a patient expert over there.
Pam Evans (16:27):
You can erase that if you want to.
Dr. Ann Blair Kennedy (16:31):
But yes, it was. It was cognitive decline. Pam looked at the researchers and said, "Okay, so these people are going to come in in the beginning, and then you're going to measure them throughout, and then at the end, you're going to tell them how they did." I said, "No, no, no. We're not going to tell everybody how they did because we're just looking at it as globally. We're just wanting to get the means and that's all we want." She said, |No, no, no. Are you going to tell them how they did?" No, no, no. We're not going to be telling them individually, because that's not important. We don't think that's important. She looked at them, and it was the aha moment, she said, "No, you have to tell them if they had cognitive decline throughout this study." They went, "Now I understand." That was the moment that I had the exact same reaction as the researchers, as my little postdoc self. It was just that incredible moment of going, now I think I finally get it, why this is so important.
Kendall Givens-Little (17:25):
I'm sorry. Go ahead.
Pam Evans (17:26):
No, I was going to say, we come back to that similar theme real often because the question becomes, "Okay, so the patient is either going to be your research, your target, your subject, or your perhaps beneficiary, but you need the patient to be involved for your research. That's what it's about, is the patient. If it's not relevant to them, if they don't understand, why me, why do I need to be a part of this? What's in it for me? What are you going to expect from me? And then what are you going to do with the information you get about me? That's just basic. Those are basic questions that people want to have answered, and not every patient is going to have the voice or the confidence to ask those questions. But as a researcher, we feel like to validate your project and my involvement, you need to be able to answer those questions.
Kendall Givens-Little (18:22):
Exactly. So that actually brings me to the next question. Dr. Kennedy, we're talking about research and researchers. Give us an idea of what kind of research is conducted through the Patient Engagement Studio. So I guess from some of their past studio sessions, what type of research has been conducted?
Dr. Ann Blair Kennedy (18:41):
We have seen all types. We have seen everything from basic bench research. So our very first study we looked at was on if acupuncture could help improve some blood measures, I don't even remember what they were, for people who were going through chemotherapy. So something as much as that as simply survey research. So people who were writing surveys and trying to find out about educational interventions or anxiety and depression.
Pam Evans (19:15):
We're creating this device that will measure, again, not trying to get into the details of things, but in questions like, "Well, how am I going to get the data to you? What if that's not comfortable for me to carry around all the time, and you want me to come in once a week, really?" It's a great idea, but in reality, are people going to commit to that? So we've had apps too. Created apps.
Dr. Ann Blair Kennedy (19:41):
Mobile phone apps.
Kendall Givens-Little (19:42):
You guys have created apps?
Dr. Ann Blair Kennedy (19:44):
She has.
Pam Evans (19:44):
Well, we have a disease-specific studio that I'm a part of, because I happen to have that disease, and the researcher had the idea of creating a phone app to monitor your disease. That has been cool. She's gotten great funding and met the benchmarks to move on to the next phase. We've really watched it develop from an idea to, but her big thing was you guys who have this disease need to tell me what's important. Had she not started with that basic premise, I'm not going to tell you what's important, you tell me what's important, I think it would have been a harder path.
Dr. Ann Blair Kennedy (20:26):
This is Dr. Melanie Cozad, who is amazing.
Pam Evans (20:29):
[crosstalk 00:20:29] She is amazing.
Kendall Givens-Little (20:30):
Okay, we're going to give her a shout out here. So how does it feel to know that you've been a part of some cutting edge, leading research? Especially for something that you said you deal with personally. How does that feel to know that you're not only your life, but you're impacting others along the way?
Pam Evans (20:51):
It's very gratifying. It's gratifying, and for a person who, all of us actually, I don't think there are any of us who are medical people. It's just a whole different view of what medicine is and where it's going, and patient care and patient concern. Yeah. So it may sound goofy to say it's an honor, but it really is an honor to get to play a role in that, and to get to see how it develops in a good way.
Kendall Givens-Little (21:23):
Dr. Kennedy, are there any other studios or studies like this around the state, or is this unique to the University of South Carolina?
Dr. Ann Blair Kennedy (21:31):
Well, we know that there's other studios like this around the country. Around the state, I'm not so sure. There may be similar things around public health and community-based participatory research, which is similar, but still a little bit different because they're not embedded in the health system like we are, and that's what makes us different. So we have trained well over 70 patients since 2016. We have several condition specific groups. So rheumatoid arthritis, breast cancer. We've had several diabetes groups. We have a regional-
Kendall Givens-Little (22:12):
I might need to get my grandfather to come up here.
Dr. Ann Blair Kennedy (22:14):
We have a regional group that we just finished a grant from PCORI. That was to create a virtual patient engagement studio, and that's where we were able to get patients from North Carolina, South Carolina, and Georgia. Just finished that project up at the end of May and trained all of them. They've reviewed projects for us as well. So we were actually modeled off of a group at Vanderbilt, and that's how we came with a lot of our processes and our protocols. We do some things differently than they do. We keep this core team together all the time and bring in additional people, additional patient experts to review, and we're expanding that way. Whereas they have a vast array of, they have over 200, maybe even 300 patients that they might bring in just to look at one study, and they might not cross paths with the different patient experts over time, whereas ours have been working together for a long time.
Kendall Givens-Little (23:16):
Do you see yourself as an ambassador for the program when you're out in the community, talking with your friends and family and loved ones?
Pam Evans (23:23):
You know, it's one of those things that when you tell somebody about it, you have to really tell them about it, because it's not something everybody knows about. So yeah, I think we really do have the opportunity to do that. I think some patients have said, "Here's somebody you might want to contact about being involved.| So that's where some of our members have come from.
Kendall Givens-Little (23:42):
Awesome, awesome. So doc, if there are any folks out there listening to the podcast and they're interested and they want to be a part of the Patient Engagement Studio, how hard is it to become a member of the studio?
Dr. Ann Blair Kennedy (23:56):
Very soon, our website will be launched.
Kendall Givens-Little (23:58):
All right.
Dr. Ann Blair Kennedy (23:58):
That we were getting ready to have up at the USC School of Medicine, Greenville site. We'll have a lot of information there, even more than what we could cover today. There is a patient expert application, so they can fill one of those out and get in touch with us that way, if they're interested. I think one of the other things that we do have to stress here is that these people are not volunteers. We pay them for their time. They come in, they are giving their time to these meetings. Sometimes we bring in people to specifically for a grant. So if we have grant funding, we can pay them. But we also want to bring in researchers, everybody from graduate students through MDs and residents, and so we have a whole process for that as well. So if they're listening, we would like for them to come in and bring their studies to us.
Kendall Givens-Little (24:46):
Got you. I think it's a small caveat that there is some level of payment afforded, but I think the big thing here is you're going to be a part of cutting edge research that is not only going to affect you, but affect your direct community. I think that that, in and by itself, is something to celebrate. So if someone's interested in this program, I think that they could go to www.sc.edu, and you can search Patient Engagement Studio, or short-term, you can search P-E-S. We have some information on that site as well. Thank you all for joining us today, and I hope our listeners are as excited about the Patient Engagement Studio as I am. It was great speaking to you, Dr. Kennedy. We'd like to extend the invitation for you and Ms. Evans to come back soon as the Patient Engagement Studio continues to grow. We thank you for all of your contributions, and we thank you for being a part of Just What the Doctor Ordered. Thank you for listening and have a great day.