Episode #88: Everyone’s an Expert: Person-Centeredness in the Clinic and Research -- A Conversation with Jackie Hinckley

Aphasia Access Conversations

During this episode, Dr. Katie Strong, Associate Professor in the Department of Communication Sciences and Disorders and Director of the Strong Story Lab at Central Michigan University talks with Dr. Jackie Hinckley from Nova Southeastern University about stakeholder engaged research and Project BRIDGE.

Dr. Jackie Hinckley is Professor and Director of the Undergraduate Program at Nova Southeastern University. She is Board Certified in Neurogenic Communication Disorders by the Academy of Neurologic Communication Disorders and Sciences (ANCDS) and Fellow in Person-Centered Care. Dr. Hinckley is currently a Board Member of Aphasia Access and the National Aphasia Association. She is Executive Director Emeritus of Voices of Hope for Aphasia. She is Project Lead for Project BRIDGE, formerly funded by two PCORI Engagement Awards and now supported by NSU. She is the author of two books, Narrative-Based Practice in Speech-Language Pathology, and What Is It Like to Have a Communication Impairment? Simulations for Family, Friends, and Caregivers. She is an Editor for The Qualitative Report, and on the Editorial Board of Topics in Stroke Rehabilitation and Journal of Interactional Research in Communication Disorders.

In this episode you will:

• Learn about the importance of including people with aphasia and clinicians in the research process to make the research better.
• Find out what stakeholder engaged research is and its importance in developing relevant evidence for clinical practice
• Hear how Project BRIDGE has enhanced stakeholder engagement in research related to aphasia.
• Be empowered to embrace your own expertise and the expertise of your clients and their family members.

KS: Jackie, Welcome back to the Aphasia Access Conversations Podcast. I believe you were first interviewed on our podcast in 2016 – Episode #2! We now have over 86 episodes that are available! Who knew the series would have such staying power. It’s really amazing! Thanks for joining me today. I’m really excited about this conversation with you and having our listeners hear about what you’ve been up to lately and how that is impacting our clinical practice and the people with aphasia that we work with.

JH: Well, thank you, Katie, for the introduction, and thank you to you and Aphasia Access for the opportunity to be on this podcast. I'm really excited to talk about these issues and talk about them with you.

KS: Well, let's dig in. So, today's topic is “everyone's an expert”. How does that relate to our clinical work and our research?

JH: Well, you know, Carl Rogers, the famous psychologist said that we are the best experts on ourselves. And I think that we all have that thought in our minds, but it really hits at the core of person-centeredness. An expert is someone with authoritative knowledge. So that has two parts, the authority and the knowledge. And an expert comes about when people agree that an individual has high performance or high knowledge in an area. I think that the idea of person-centered care in our clinical work is that we acknowledge that our clients are the best experts on themselves. And I think most of us who are practicing speech pathologists would certainly acknowledge that and agree with that. But in reality, in a normal clinical process, it's actually kind of hard to do. Because the clinician is, by definition, an expert, and has a certain degree of authority in the clinical interaction. So, for example, clinicians need to do an assessment and a diagnosis. And the client really can't self-diagnose, so there's an issue of authority and knowledge from the point of view of the clinician. But now that authority tends to seep into other areas like goal setting, where really the client needs to bring forward their own expertise about themselves. When we continue to exercise authority over what the goal should be, and yet, evidence shows that collaborative goal setting like goal attainment scaling significantly improves not just the immediate outcomes of therapy, but also how active the client is after they are discharged home. So, there's a tension around expertise. It has to shift back and forth during the clinical process. And a lot of times, it starts with the clinician having a lot of authority, but we have to know how to give our client that authority about themselves. So, it's only in the last decade or so that the idea of who's an expert and person-centeredness really has been applied to research.

For example, if we think about a traditional research process, the researcher reads the literature and identifies the knowledge gap comes up with the experiment or whatever study that can contribute to that gap. And the researcher determines the design, the method, the measurement, does the research, publishes it and gets it out in a way that the researcher basically is crossing their fingers is going to have the impact that they hoped for. The problem is that it this ignores who is going to be affected by the research. So, aphasia in, our specialty in our world here, is, is always existing in persons. It's not something that we can be that we can study in a petri dish. So anytime we do research that has to do with aphasia, we need to be acutely aware that we're creating knowledge that is going to actually affect somebody's life. And so maybe this knowledge is going to affect how the aphasia is assessed or treated, or what we do to support people with aphasia, but whatever it is, it's the lives of people with aphasia that are being affected by this research.

So, you know, let's step back a minute. And let's say I invented some new kitchen gadget, or a shoe or something, right. So. I'm the researcher of this new gadget. If I want to be successful in selling the product and having the product being used, I would have incorporated the views of people who might use it by trying out the products way before I ever try manufacturing and selling it because I need that feedback. I need to know if there are potential customers out there and whether they're actually going to use it.

And the same thing really applies to research. So, if I'm a researcher and I create a new research product (a.k.a = knowledge, or study to create knowledge). If I create some research product, but I'm not an expert user of that knowledge, in other words I'm a researcher who doesn't do assessments every day or treatment every day, then I run the very great risk that I'm creating a product that can't quite be used by the people was originally intended for. If we really embraced person-centeredness in research, then we would start by thinking about who are the people who are going to end up being affected by this research product or this research outcome. And we would incorporate people living with aphasia, and also clinicians into our research, and that would make the research better.

KS: Powerful stuff! I remember the Disability Rights initiative using a slogan, “Nothing about us without us.”

JH: Yes, that is a great slogan that has been around for a while. And that definitely reflects the idea of person-centeredness. And I think we need to remember that slogan and everything we do, whether it's our clinical practice, but also in our research. And that's a little bit of a new way of thinking about research. So, research is not just about the people with aphasia, sometimes it is, but a lot of times it's also about what are the best practices in clinical activities. So, we need to include both people with aphasia, their families, clinicians, maybe policymakers, other people who are really the stakeholders who are affected by the research products that we make, and they need to be involved in planning and doing the research and saying what kind of research would be most helpful.

KS: I'm thinking a lot about researchers out there, Jackie, you and I included. We have clinical experience. So maybe they have a good idea of what clinicians need to know from research.

JH: You know, I have heard this from some people saying, “Well, I've been a clinician, so I know.” And maybe that's true. I think that people like you and I, who have been spent a good amount of time being clinicians in our past, probably are ahead of the game. In a sense, we might have a better sense of what we don't know, right? Because we've been out there doing it. But I will, in my opinion, I think researchers who aren't actively out in clinical settings, and they mostly aren't, still aren't quite totally up to date with the current challenges that are being faced by people. Anthony Bourdain, the celebrity chef said, “Just because I like sushi doesn't mean I can make sushi.” So, I think we may think that…but if we're not right in the thick of it, we may not know as much as we think. And we need to bring in the experts who actually do know what it's like to do that daily clinical work.

KS: Point well taken. This leads us to the idea of stakeholder-engaged research. What is it?

JH: The term stakeholder engaged research is an umbrella term. It covers a lot of different approaches to the idea of bringing in individuals who are going to be affected by the research to actually help can plan, conduct, and disseminate the research. So, there are various ways that stakeholders can be involved in research. They could be consultants, or they could be co-researchers, and full collaborators. In the case of a co-researcher, they help come up with research questions, help design the research, pick the outcome measure, help with data analysis, or interpretation, and even contribute to dissemination of the research results. We have found that people, family members, clinicians, other stakeholders, and people with aphasia can participate it fully as collaborators in all of these things if they so choose.

KS: Amazing. I know there are a few examples of this kind of research in Ireland. For example, Ruth McMenamin …. and also, in Denmark Jytte Isaksen is doing interesting work, and of course there is Ciara Shiggins in Australia….what about in the US?

JH: Yeah, so in other places, like in Europe, as you say, in Australia, I, you know, I think they've been a little ahead of the United States in terms of understanding that they need to bring in the people who are affected by research into the actual conducting of research. And that also brings up the point that I said, stakeholder engaged research is an umbrella term. There are many different terms and in some other countries, they also use different terms for this. But I'm using stakeholder engaged research here, because as you point out, it really is the term that's coming to the forefront here in the United States. So, in the United States, and in our all of our ASHA journals, we unfortunately have very few examples of stakeholder engaged research, where clients and family members are fully engaged collaborators are involved. There's only a handful of studies. So, it hasn't been a widely used approach in our field yet, but I think it's growing quickly.

KS: What makes you think it will grow quickly?

JH: There are three broad reasons why I think this is changing fast. First, I think the idea that people who are being affected by something – whether it be a policy, regulation, legislation – is taking a broader hold in certain areas of our lives. For example, in academics where we have student-centered learning. Second, research funding agencies in the United States are starting to value, and therefore reward with funding, research projects in which stakeholders play an important role and make a substantial contribution to the research project. The most important landmark in terms of funding agencies in the United States is the creation of the Patient-Centered Outcomes Research Institute, called PCORI. It was created as part of the Affordable Care Act in 2010 and it was charged with funding comparative effectiveness research – in other words, research that would help patients and clinicians what is the best treatment for them. Their slogan is “Research Done Differently”, and I think that captures that the research they are producing is not at all the kind of traditional research that we mentioned earlier. PCORI is funding all kinds of health research across many disciplines in innovative ways. This is really changing the landscape of research and research funding, because other funding agencies are starting to follow their lead. The third reason why I think stakeholder-engaged research will grow quickly in our field is the experience we’ve had with Project BRIDGE.

KS: I’ve been a Regional Coordinator and also a member of a few research teams for Project BRIDGE. Honestly, it’s been a gamechanger for me in how I think about approaching research. Can you tell us about how Project BRIDGE got started?

JH: Sure. So, 10 years ago, I was at a conference called the Clinical Aphasiology Conference. And for anyone who's not familiar with that conference, until the last couple of years, the only people who could attend the conference were people who submitted presentations. So, this means the conference in that sense rather exclusive, and that the audience, the people who are present at the conference, were really only researchers. So, 10 years ago, I was at this conference, listening to three days of presentations, all about aphasia treatment and I suddenly realized that we're all researchers talking to other researchers about aphasia treatment, but no one at the conference was either using the treatment as a clinician or receiving the treatment as a client. So, I said to some of the folks at the meeting, “There should be some people with aphasia at this conference. We're talking about their treatment.” And the response I got 10 years ago was, “Well, they don't really belong here.” The timing of that was one year after PCORI, became really active and started funding initiatives.

Around the same time, we had done a project with the Sarasota Aphasia Community Group, which is a fabulous group, if anyone needs a referral in that area. They run themselves. The group is really great. We asked their members to come up with ideas about what research they think would be important. We talked to them about research, and we set them off. So, they were off on their own and we did not interfere with this. They had their own group meetings and came up with the research ideas. So, they came up with 22 ideas.

Now most of their research, and by the way, these were really good questions. And most of them, you know, were formulated pretty close to how we would normally formulate research questions. I mean, they did a fabulous job with very little information about research. Most of their research questions were about the best treatment for different kinds of language issues. For example, “What's the best treatment for being able to produce sentences?” But then they came up with some really special questions that I don't think that you or I even despite all of our clinical experience, and our research experience, I'm not sure we would come up with these questions.

For example, they wanted to know, “How can the speech pathologist engage the person with aphasia, not just do rote exercises, but rather connect with the aphasic as a personality, tailor the therapy to the individual needs?”

KS: Wow, that's mind blowing. And that's 10 years ago, right?

JH: Yeah, yeah, maybe even more than that. And by the way, I said aphasic. I'm reading what they wrote, so I just wanted to let everyone know that those are their words. Another question they came up with was, “What is the effect on the person with aphasia if they do not like their speech pathologist? or ‘The speech pathologist doesn't understand the patient's needs or doesn't customize the therapy towards them?’”

Wow. I think as clinicians, we probably know, in our hearts that when we don't have a good match in terms the rapport between the clinician and client, it probably doesn't go that well. It's not the best outcome. We all know this. But we don't know very much about it from a research point of view. And then another question they came up with was “What makes a speech pathologist excellent?” These are from their point of view. It was just people with aphasia and family members coming up with these questions.

KS: Wow, well I’m certain that I wouldn’t be able to come up with those types of questions. They are so meaningful and important. They really get right down to what’s important, don’t they?

JH: Yeah. I'm really pleased that we were able to publish that paper with the founders of the Sarasota Aphasia Community Group. They were co-authors. They were equal collaborators with us in the project. That was published in 2014.

And then two years later, in 2016, we submitted a proposal to PCORI, when I was the Executive Director of Voices of Hope for Aphasia. And although that first proposal was not funded, we got great feedback. When I read the feedback, I thought, you know, if we make this actually a little bit bigger, maybe it's going to be successful, which is not always the way you go. But we partnered with the University of South Florida. So, it was Voices of Hope for Aphasia and University of South Florida. And that was funded, and that proposal created Project BRIDGE.

The first two years of funding allowed us to create a working conference. The goal was to bring together people with aphasia, family members, clinicians, and researchers to form collaborative research teams. One challenge with this kind of work and you know, it's this is not just in the world of aphasia, this is any health domain that uses this kind of stakeholder engaged research. So, one challenge is that researchers know about how to do research but other people who aren't researchers don't know so much about research. On the other hand, researchers are not experts on daily clinical processes, nor are they experts on living with aphasia. So, we created some video trainings, and some of them were for people with aphasia and family members to learn more about the research process, and some were for researchers about communication supports role dynamics, and plain language. Because, you know, most researchers have never been trained in doing this kind of collaborative research. So that conference was held in October 2018. And after a two-day meeting, 11 research teams were formed. And you were there, Katie.

KS: Yes! Project BRIDGE was a career changing experience for me. I had invited two of our Lansing Area Aphasia Support Group members, Chris and Ruby, to join me, and we flew down to Florida together. I think from that beginning of travelling together to a conference set a stage for something different. Actually, Chris’s sister, who lived in Florida joined us at the conference too. None of us really knew what to expect, but from the very beginning, we all knew this was different. At the conference, I remember just having my mind blown that there were over 100 people attending the conference- many who had aphasia or were family members whose lives were impacted by aphasia. One of my favorite parts was when we were in our teams, I had a team about storytelling and aphasia, and everyone was brainstorming on research questions. The training, the collaboration, the energy, it was really impactful. I’d love for you to tell our listeners more about Project BRIDGE.

JH: So, after that conference, we were very happy that these research teams were formed and there was so much energy. And I want to say that, you know, from the very beginning, before we even got funding, we had an advisory team that was made up of people with aphasia, families, clinicians, and researchers. And so, after the conference and a little bit of follow up with our teams. The whole advisory team was so excited, and we there was so much momentum, and we knew we wanted to keep Project BRIDGE going.

So, we applied for a second round of funding from PCORI. And with the second round of funding, we created what we call a research incubator. And we were able to create four regional centers around the United States because we knew there are many people who wanted to participate, but who cannot travel across country to a conference. So, we started Project BRIDGE as a research incubator in January 2020. Our mission was to train 48 people with aphasia, family members, clinicians, and researchers on stakeholder engaged research and get them connected to a collaborative multistakeholder research team. Katie, you are one of the regional coordinators in Michigan yourself for the Midwest, so you know how busy we got!

KS: Oh yes, busy is an understatement. Suma Devanga from Western Michigan University and I were the Midwest Bridge Regional Coordinators. We had so much interest we just kept meeting with various stakeholders, holding trainings, connecting people with research teams. Definitely Project BRIDGE was the place to be!

JH: All the regional centers were very busy. At the end of two years, we had three times as many people sign up to participate than we planned, and we trained 25% more people than we planned. Many more stakeholder-engaged research teams have been formed, and they’re studying topics like the effects of yoga on aphasia. The yoga team actually started in the original 2018 conference. And, you know, check it out, maybe we can share some links to a couple of their publications, because it's a very productive team.

KS: Absolutely , we'll put we'll put the links to that and some of the other things you’ve mentioned in the show notes.

JH: Great. Another team that has been influenced by Project BRIDGE is aphasia games for health. There's more than one team now working on mental health interventions for people with aphasia. We also have a couple of teams working on different aspects of friendship and aphasia. One team is a collaborative team working on how to run aphasia groups. I mean, isn't that great? Get the people with aphasia to run a study on the best way to run the aphasia groups, right? It makes total sense.

We've got lots of teams working, and we've had several different presentations at various conferences. And, you know, please stay tuned in the coming months and, and years, because more and more the work will get to a point where it'll be out in different publications.

When I look back at the work that we did with the Sarasota Aphasia Group, and the questions that they came up with, I'm so overjoyed that many more of them are now being addressed because people with aphasia, care partners, clinicians are being involved in not just coming up with the questions but planning and actually doing the research.

KS: Powerful stuff! This is all very exciting. But there must be some challenges…

JH: Definitely, there's definitely challenges. First of all, you know, most researchers who are active today have not been trained in this kind of research. They were not trained in their doctoral program, to sit down with people who have expertise in a completely different area. They may have been trained to collaborate with people who are more or less like them. But that is a very different game. So, one thing that I think we'd like to do in the future is help foster the incorporation of the skills needed to do this kind of research into doctoral training programs. When we talk to researchers who have gotten into this, like you. We find that this is a recommendation that many people come up with. Another challenge of this kind of work is that it takes more time. It is time consuming. It takes time to involve people who come from a different background. And it doesn't matter if they are people with aphasia, a community partner, whoever they are, when they have a different background, then an academic researcher, that's going to take more time, and it's really, truly an investment. That is an issue for this kind of work. Another challenge or risk is as there are more incentives for in involving stakeholders of different types into the research process, there's always a risk of tokenism. So, if that starts becoming rewarded in some way, like through funding, then there's a risk that, you know, stakeholders are up serving on advisory boards, so it looks like they're involved, but they're not really, truly collaborators or really involved. So that is a risk I think that we're going to run, especially in the future.

But you know, honestly, I think that's a risk that we run in our clinical work, too. Sometimes we don't mean to be to be tokenistic. But I think when we ask our clients a general question, like, “What would you like to work on in therapy?” You know, our heart is there, we want to involve the client. But that's a question that the client is not really prepared to answer in that form. Most of our clients, probably, they never been in therapy, they don't know what therapy is in the first place. They don't even know how to start thinking about that question. If we don't take extra steps to seek out their perspective, and what's important to them, that that's a little bit tokenism too. You know, we don't mean it to be, but it really kind of is, I think. We need to ask specific questions; we need to use tools that we have. For example, Aphasia Access now has the Life Interests and Values cards, which is a fabulous way of getting the idea of clients’ priorities for therapy, in an aphasia friendly way. I think the other thing for clinicians for our clinical work is when we do ask questions of our clients, and they give us the answer, I think we have to do a better job at taking them at their word. Because I think sometimes, if the answer is not quite what we think it should be, or we're a little surprised by the answer, we're very likely to attribute insight, problem solving issues, motivation, issues, whatever it is, into that client’s response, when perhaps, that that is their answer for them. And you know, they are the experts on themselves.

KS: Yes, that's such great perspective and food for thought. I think we really need to listen and embrace what our clients put forth with ideas for how to work on goal areas and be open to receiving the goals and the ideas that they that they have. Even if it takes us a little off road from where we typically go. How can we help them explore and develop and operationalize their ideas? And I think it is challenging, it's new territory for us as clinicians and research but I think once we're open to this, I mean, honestly, sky's the limit. And the cool thing is that we as researchers get to learn and grow alongside our clients as well. Jackie, this has been such a thoughtful and great conversation. The time has just flown by. But as we wrap up today, do you have any final thoughts?

JH: Well, you know, a lot of times we hear people say, “I'm no expert”, and Project BRIDGE has really taught me and showed all of us involved I think that a few things. Clinicians might not feel like experts around researchers, but they are experts about what they do and the clinical process. People with aphasia and care partners probably don't feel they don't feel like experts around researchers or clinicians, but in point of fact they are experts about themselves and their own lives and, and what's important, and what we can best do to fit into those priorities. So, I think that we've learned from Project BRIDGE that a researcher or a clinician who exudes cultural humility. You know, we might not feel like experts in front of clinicians or people with aphasia and care partners. So, I think we need to acknowledge, we're all experts on ourselves and our little corner of the world, what we do all day, and other people are experts on other things. And hopefully, we don't impose that onto other people and that we can just collaborate with each other.

When some kind of research is going on, that might potentially affect something that a clinician routinely does, or how a person with aphasia is living, or the kind of therapy they're going to get, etc. We need to be willing to step up and contribute to a collaborative team. You know, probably not every kind of research in the world is a perfect fit for this kind of stakeholder engaged research. But a lot of what we do in aphasia, I think, and especially things that are important to members of Aphasia Access, would be better, more effective and more efficiently done with a collaborative team. We need everyone's expertise to change things for the better. When we do this kind of collaborative research, it speeds up how fast the research gets used in practice settings. So, it benefits people faster, because it's more effective. So, we need people to be aware of this and get involved. Project BRIDGE, fortunately, is now supported by Nova Southeastern University. So, it's not going away just because the funding ended in this year. And we are continuing to help people, whether they be researchers, clinicians, people with communication disabilities, or family members to get going on stakeholder engaged research. We still have our video trainings, And, coming soon, we'll be offering customized research team trainings. I invite everyone to please check out our website, www.projectbridge.online You can sign up for our newsletter and we post various resources that are helpful tools.

KS: Thanks, Jackie. I'll be sure to put all of your contact information and Project BRIDGE as well as some articles on stakeholder engaged research in the show notes. Thank you, Jackie. you've given us lots of food for thought and inspiration for action during the conversation. But I also just want to say, thank you for your forward thinking and helping us in the world of aphasia get on this stakeholder engaged research train. Project BRIDGE is a great conduit for who knows what's to come.

JH: Well, thank you, Katie. And, and thanks again, for this opportunity to talk about this effort. You know, there's so many people around the United States who are participating in this, I could have spent the whole podcast just probably listing their names, but that might not be too engaging.

KS: It’s a big posse, Project BRIDGE!

JH: It's very big. Broadly, I definitely want to acknowledge them, even though I can't acknowledge everyone by name. Everyone's doing such exciting work and people are finding their own paths through this, which is what we need. I didn't say it earlier, but the idea of incorporating people living with communication disabilities into the research really springs out of my own personal experience with disability and in life. And it's such a privilege for me to meld my personal experience into things that hopefully will help others too. So, thank you very much.

On behalf of Aphasia Access, we thank you for listening to this episode of the Aphasia Access Conversations Podcast. For more information on Aphasia Access and to access our growing library of materials go to www.aphasiaaccess.org If you have an idea for a future podcast topic email us at [e-mail]. Thanks again for your ongoing support of Aphasia Access.

Resources Referenced in Episode

Project BRIDGE

www.projectbridge.online

Email: [e-mail]

Twitter @ProjectBridge3

Facebook @bridgeresearch

Instagram @projectbridge2

Dr. Jackie Hinckley - [e-mail]

PCORI Engagement Resources: https://www.pcori.org/engagement/engagement-resources

Project BRIDGE (and resources) on PCORI: https://www.pcori.org/research-results/2020/building-bigger-bridge-research-incubator-network-pcor-communication-disabilities

Project BRIDGE Published Abstract: https://www.frontiersin.org/10.3389/conf.fnhum.2019.01.00030/event_abstract

Examples of Stakeholder Engaged Research

Project with Sarasota Aphasia Community Group:

https://www.tandfonline.com/doi/full/10.3109/09638288.2013.829528

Team Yoga - 1: https://pubs.asha.org/doi/10.1044/2020_PERSP-20-00028

Team Yoga - 2: https://pubmed.ncbi.nlm.nih.gov/34797684/

Aphasia Games for Health: https://www.aphasiagamesforhealth.com/

Canadian Institutes of Health Research Patient Engagement in Research Resources

https://cihr-irsc.gc.ca/e/51916.html

Ethics in Patient Involvement: Hersh, Israel, & Shiggins 2021 https://www.tandfonline.com/doi/full/10.1080/02687038.2021.1896870

Goal Setting Resources for Aphasia

Live Interests Values Cards (LIV! Cards) https://www.aphasiaaccess.org/livcards/