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Building a Consumer-Informed Research Program

Researchers can get started with community-based participatory research approaches by seeking out and incorporating the knowledge of clients into their research questions and study designs.

Jacqueline Hinckley

DOI: 10.1044/cred-ote-r101-001

What is consumer-informed research?

The traditional idea of research is that it’s investigator initiated. And so researchers, who may have differing levels of engagement in either clinical work or the community, decide on a topic, choose a research question, and pursue it. It’s really all about the investigator choosing to do that.

One of the important ideas, especially I think for our field in communication sciences and disorders and anyone who is in clinical work, is the idea that it’s not just the researcher who has a vested interest or an important perspective on what research questions are the most important, or what research should be done, or how it should be done. Recognizing that we need other people’s perspectives, that’s where community-based participatory research really comes in. The idea is to say, for example, to consumers or clients, “What do you think are important research questions? What do you think is needed? What do you think about a particular program or treatment or intervention?”

This is important because if, for example, our clients don’t like a particular intervention — if for whatever reason it seems difficult for consumers or clients to endorse it or embrace it, it won’t get used. Then we have to reflect on the fact that we have a finite amount of research resources, and we need to use those research resources wisely to address treatment research questions or other questions that are actually going to bear fruit and be used.

Similarly, clinicians should be asked about the acceptability of treatment. For example, they should be actively engaged in the research process, and that’s one of our communities as well. To involve them in different ways in research so that everybody who is actually going to use the outcomes of the research is involved from the beginning. I would say that’s the basic idea behind community based participatory research.

The philosophy is that you’re acknowledging the competence and the importance of everybody’s perspective, including the clients that we serve. That they have a voice that is, I would say just as important, in a different way, but just as important as a researcher’s voice in thinking about how research resource should be used. Research resources in the United States basically equals mostly taxpayer dollars. Therefore, it’s very important that everybody sort of agrees and arrives consensually at an agenda that everybody thinks is an important and a good use of those resources.

I became interested in other fields that were asking their patients or their clients, “What do you think are the important research questions? What do you wish researchers would study?” I saw that that was happening in other fields, and so a recent project was to try that on a preliminary basis on a large group on individuals with aphasia, and to ask them, “What do you wish researchers would study?” Or, “What do you think is the most important thing about aphasia or living with aphasia?” It turns out that in the United Kingdom, they have actually taken this to quite a high level recently and come up with top ten priorities about living with the consequences of stroke, for example. These things are arrived at by taking the perceptions of clinicians, researchers and clients equally, and going through a process where all of that is sorted out, and everyone ends up agreeing on a priority — a list of priorities. We tried that on a preliminary basis on a group of people with aphasia, basically just to say hey, people with aphasia can participate in this kind of process as well. It was a very revealing project to see what they needed and what they thought.

What surprised you most during the course of this project?

Well, the first thing that we should have anticipated, but didn’t, is that they — the group of individuals with aphasia said, “We are thrilled that you asked us about research, and we really want to participate in this, but the first problem that we have is that we don’t have the slightest idea about what kind of research is going on in aphasia.” And when you think about it, how can they know? Where would they go to find out? Everything that has to do with finding out about research is designed mostly for researchers — or, at least at that level. It’s not designed for lay people, certainly maybe not for people with aphasia or other language disorders.

So, the first thing is: Wow, we really have a lot of work to do to convey our research and our results of our research to consumers, whether they have a language impairment or not. I don’t think that in communication disorders we’re doing the best job we can do to create summaries of current research in laymen’s terms, and things that would make this accessible. So, we didn’t plan that as a step in the process, but we had to put it in, because people were not informed enough.

Sometimes this makes researchers want to say, “Well, see, they don’t even understand research, so how can we talk to them about it?” But it’s a simple process of giving people enough information so that they can participate, and then the researchers also need to listen to their perspective because they have an expertise that the researchers don’t have.

What advice do you have for investigators looking to build client perspectives into their research program?

Well, there are different levels of incorporating the perspectives of clients or consumers into our research. It can start with something as simple as getting an advisory group of people with the communication disorder that you’re studying. They can give you feedback on your recruitment materials, on your consent form process, and they can tell you, “Yes, this is understandable to us,” or, “This is a good process.” And they can serve as an advisory group to you. That is something very simple to do, even in a more traditional research design.

The ultimate level, obviously, is having them as co-researchers with you. This is starting to happen a little bit in various areas of communication disorders, where maybe a consumer joins in with a researcher and says, “Hey, here’s a question that I think should be addressed.” The researcher has the expertise on research methods and similar things, but the person who’s living with the communication disorder has that expertise about what the issue is that needs to be addressed in research.

People starting out can have an open view — that it’s not just all about the researcher. The researcher is, hopefully, producing something that is not just going to have an effect on other researchers. If you’re doing research that’s going to have an effect on somebody other than the researcher next to you, you probably need to incorporate the views of those people into the planning and design of your study, as well as to ask them for help in producing a nice lay summary of what you have done.

Any time there’s something new, there’s that little transition period where you say, that traditional thing, that’s the real science. I would say, let’s acknowledge that there are a lot of different forms of knowledge and a lot of different sources of knowledge, and all of those are important and need to come together.

If we only have one kind of knowledge, there’s a whole lot of stuff we’re not going to know. I would say to new PhD students or new researchers thinking about it — if this appeals to you, if it’s something that addresses the next obvious research question in your agenda, I would say please follow that and don’t shy away from it.

Further Reading

Hinckley, J. J., Hasselkus, A. & Ganzfried, E. (2013). What people living with aphasia think about the availability of aphasia resources. American Journal of Speech-Language Pathology22(2), S310–S317 [Article] [PubMed]
Hinckley, J., Boyle, E., Lombard, D. & Bartels-Tobin, L. (2014). Towards a consumer-informed research agenda for aphasia: Preliminary work. Disability and Rehabilitation36(12), 1042–1050 [Article] [PubMed]

Jacqueline Hinckley
University of South Florida

The content of this page is based on selected clips from a video interview conducted at the ASHA Convention.
Copyright © 2015 American Speech-Language-Hearing Association

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