PAR Practices in Disability Research with Glen White and Monika Suchowierska. Moderated by Peter Blanck. May 15, 2003 Peter: Hello, everybody, my name is Peter Blanck. And it's a pleasure to introduce the inaugural talk of our series here, which is on community-based resource and research center. It's a pleasure for me on a number of levels to participate, particularly because it's an important time in the history of disability law and policy and research and advocacy, particularly because NIDRR, the National Institute for Disability and Rehabilitation Research has had confidence in all of us to further this topic and mostly because it's such a fantastic group of people working together on this -- these common issues from participants to researchers to advocates to people with fantastic expertise in a whole range of areas. So this is the introductory session and it will be on participatory action research. I wanted to first introduce the co-principal and investigator on this project, Heather Ritchie who will introduce the participants and some opening words as well and then we will proceed with the webcast and again it's a pleasure to be working with you and I hope that we will have many exciting webcasts to come in this project. Heather. Heather: Yes, thank you, Peter. First I just want to state as Peter did, that we're delighted to bring this webcast to you from the Community-Based Resource Center and I'd like to tell you just make a few comments about the resource center and the technology for -- technology for independence projects. This webcast is the first of a series of webcasts on conducting research in assistive technology using Participatory Action Research. The series is a part of a training project of the technology for independence, a Community-Based Resource Center or CBRC. The purpose of the training project at the CBRC is to provide opportunities to build the capacity of community-based disability organizations to conduct, use and evaluate research. To that effort, six teams, comprised of university- based researchers and members of community-based disability organizations were selected in a competitive proposal process for these trainings, and these six peoples are conducting research on various topics related to assistive technology for the independence of persons with disabilities. The trainings include online modules, as well as technical assistance from the CBRC and culminate in an online symposium. Currently the CBRC website has a long distance learning module on Participatory Action Research that can be accessed by our audience, including the public. And we encourage our audience to go through this module. For more information on the trainings, you can see it on our website by clicking on training opportunities. I also want to mention that the Community-Based Resource Center is one of four technology for independence projects funded by the national institute on disability and rehabilitation research, and in addition to the trainings, the resource center provides technical assist and dissemination to technology for independence research projects. Each of these three research projects in the technology for independence program or project uses a participatory approach in their research and is examining different and innovative areas in assistive technology and we invite you to learn more about these projects and their findings and you can find that information once again on our website. This webcast is just a bit different in that the selective participants of the training project are on the phone a long with us, and of course our audience is accessing the -- the public audience is accessing this over the Internet. Participants that are on the Internet can send questions to the presenter by E-mail. We ask that those of how are on the phone with us, hold your questions until we request comments and there are specific times during the presentation that we'll ask for your comments. Those have been set up. I'd like to introduce the presenters today. We have two outstanding presenters with us to discuss Participatory Action Research. Dr. Glen White and Monika Suchowierska. Dr. Glen White is currently the director of the Research and Training Center on independent living at the University of Kansas in Lawrence, Kansas and has been involved in rehabilitation and independent living field for over 30 years. Glen is an associate professor, and directs the research group on rehabilitation and independent living at the University of Kansas. He has conducted several research studies using PAR in his research with individuals with disabilities, and has published on the topic. And his most recent publications on PAR are listed in the annotated bibliography on the CBRC website. Presenting today with Glen is Monika Suchowierska. Monika is a fifth year graduate student in the department of human development and family life at the University of Kansas. She has been working closely with Glen on the benefits and challenges of Participatory Action Research, as well as the strategies for implementing Participatory Action Research or PAR. Monika is from Poland and plans to return to her home country after completing her studies to collaborate with Polish professionals who are interested in applied behavioral analysis and disability issues. Welcome, Glen and Monika. We're delighted that you could join us and at that point we will turn the discussion over to you. Peter: Thank you we want to acknowledge our appreciation to both Dr. Blanck and Heather and staff for allowing us to come and to spend a few minutes with all of you that are listening in on Participatory Action Research. And it's just -- we've been talking about this and planning for this for the last several months and really want to make best use of the time for each of you that invest the time to listen today. So we want to thank you for being part of this process. What I'd like to do now is turn this over to my colleague, Monika Suchowierska. It took me some weeks to learn how to say that, but I'll turn it over to her and she will talk about how we define PAR. Monika: Thanks Peter: An approach to research is truly a philosophy orrientation to conducting research, if you will. This approach uses collaboration between consumers and researchers. And what we mean by the affect, the phases of the research project is implementation and evaluation, and this main characteristic results in choosing goals, research goals that are relevant, procedures that are accessible -- acceptable and outcomes that are significant to both researchers and consumers. And additionally, research may also result in interventions that are sustainable, that are actually carried out by natural (Inaudible) for long periods of time and interventions that are used to inform action for social change. So, in other words, in corporation of PAR into the research process made the studies whose results are highly relevant to both researchers and consumers. Now, just a few words about the actual terms, Participatory Action Research. The term was coined by h*l to describe an integrated activity that combines social investigation, educational work and action. End quote. It's important to remember that this was supposed to be a research activity, so it was supposed to be a systematic study of the situation that resulted in the production of knowledge. And when you look at PAR literature, when one looks at the PAR literature, one would notice that subsequent authors often referred to Hall and defined PAR in a variety of ways. For example, Whyte in his book published in 1991 put emphasis on the applied aspects of PAR. He wrote that the goals of PAR were to seek information and ideas to solve problems of an organization. However, the novel element was that the agent of change were not the researchers but the members of the organization who are actively engaged in the research process. In contrast, Maguire stressed the aspect of social change that's accomplished when the researchers who are typically marginalized collaborate. Another example would be Reason's definition. He defined PAR as an emerging paradigm for experimental inquiry where the research is done with and for people, not on people as in the more traditional paradigm. Also, the definition provided by the national institute on disability and rehabilitation research, NIDRR, says that PAR recognizes the needs for persons being studied to participate in the design and conduct of the research phases. And the writers in NIDRR stressed that PAR is an approach or strategy to research, not methodology. And most recently, in 2003, Minkler & Wallerstein wrote that PAR is a collaborative approach to research that equitably involves all partners in the research process and recognizes the partners' strength in different knowledge, academic knowledge, researchers knowledge, and the knowledge of the consumers. So as you can see there are multiple understandings of PAR and some of the reasons for the different definitions of PAR include the diversity of fields that incorporated PAR, the diversity of research questions and participants in the scope of PAR. So we think that PAR may be best thought of as an umbrella of research approaches that encompasses the variety -- different degrees of participation by the consumers. Heather: Monika, let me interrupt for just a minute and ask that whomever is using a speaker phone to please pick up and use a direct hand set because we're having some interference here with background noise. So please so that those who are on the webcast over the Internet and accessing it through audio means have a clear -- you know, there is clarity in the cast. I'm sorry, go ahead. Monika: I just wanted to give a couple more examples of those (Inaudible), if you will, of PAR. They include participatory research, action research, (Inaudible) research, critical theory, collaborative research, empowerment research and community-based participatory research. And again, there are differences among all of those approaches, but the common thread, the common characteristic is the sharing of research decision-making with the participants. So I'd like to conclude my section by citing again Hall from 1992 -- (Inaudible) fundamentally is about who has the right to speak, to analyze, and to act. And with that quote I'd like to turn it to Dr. White who is going to talk about the history of PAR. Glen: Thank you, Monika. We had a chance to talk a little bit about the definitions of PAR. There are many and they come from many different areas and we'll see in just a little while the different types of fields and disciplines that are using PAR and how it's being incorporated into the field of epidemiology, believe it or not. I couldn't believe it when I saw that. Are we getting a little feedback, Heather? Heather: Apparently so. Can I request that the training participants who are on the call directly with us not use a speaker phone because we are getting background noise that's interfering with the presentation. Glen: Thank you. Talk just a little bit about the history of PAR. PAR is not necessarily the new kid on the block so to speak. It's been around for the last three decades. This merged as a paradigm for applied research and if you look back into the literature, the historical roots of PAR, go back to the 1940's, and it's really an umbrella term for many different approaches as Monika just expressed a few minutes ago. It can be traced back to two historical traditions that represent two different approaches at different ends of the continuum, full. At one end is action research. It's really in the tradition of a social scientist names Kurt Lewin, 1946, and several of his followers for whom he put the accent on involving people affected by the problem in practical problem- solving and he used a cyclic al process to do that and that process involved finding the facts, what are the actions to take to address those facts, and then evaluating the results. So it's kind of like so, so what, what now? In this tradition there is some but not extensive involvement of the affected individuals. Typically, little commitment to broader social change objectives, so the thought is that people are really kind of more involved early on in the process. But not necessarily continuously through the process. Let's see, the other end of the continuum is participatory and collaborative action research, namely had its roots in related work in the 1970's, early on looking at oppressed people in Africa, Asia, and Latin America. Some of you may be familiar with (Inaudible) in his work in objective consciousness and that influenced some of the theology, but the notion has real given people a real sense in making change. I think this notion for PAR coming from the independent living moment there is a real sense of consumer voice. That's what I like to think about it. The same thing on the community service movement, we're seeing a lot of emphasis on youth voice. So there is a lot of commonalities with the aspect of PAR. After the influence in the other developing countries, a shift to PAR kind of started to come back into North America and created opportunities to work with more traditionally disadvantaged people. We see people did a lot of work with PAR looking at social movements such as migrant workers, and even the disability community later on. So this movement really towards increased consumer involvement in research is an extension of trends of larger society and in the disability community. So some of these trends, if you think about them, certainly relate the trend of consumerism, self-help, a lot of self-help groups really started out of the mental health field instead of having necessarily professionals leading the group and having the people with the problems lead their own groups. Civil rights and then total quality management also was emphasized. PAR got a little more influenced as a result of the amendments of the Rehab Act of 1992, kind of moving our history up to our last decade in the United States. And that Rehab Act authorization, there was some specifications that the NIDRR director was supposed to incorporate the concept of PAR in parts of its research, mandated research. The director of NIDRR back then was Dr. William Graves and he first articulated that concept in 1991. And he wrote -- I'm going to quote Dr. Graves -- he says NIDRR will be encouraging the adoption of the PAR approach to disability and rehabilitation research as a basic theme throughout the long-range plan. Now if any of you have had a chance to look at Dr. Sellman's long-range plan there was a very strong PAR emphasis in that plan and do I believe it will be carried out under the new director's plan as well. This is going back to Dr. Graves' quote, it will be a systematic by including statements in the preambles to absolute and invitational priorities to stress that inclusion of the PAR a research to research. We're going to talk a little bit later on in the broadcast today about challenges and opportunities for PAR. It's not an easy thing to do and a lot of people just give lip service to it or make it kind of more window dressing but we'll hear a little more about that in a little bit. As a result of the initiative of Dr. Graves and NIDRR back then, they published a parole posed policy statement called CORD, or Constituency-Oriented Research and Dissemination, and that document really reflects PAR principles. So we've given you kind of a chance to define PAR. We've given you a cursory opportunity to do this, in the time we have with you today and we've had a chance to talk historically. What we'd like to do now is turn this back over to Dr. Blanck to allow for some times or question and answers if you so desire, and we'll be happy to respond to those. To Dr. Blanck. Peter: Thank you very much. That was a very interesting discussion, good opening. The participants on the line, I'd like to go to you first. Would you have any questions? If you do have a question, please direct it to our experts and identify yourself first and where you're from. Maybe a sentence on your background and we'll have a very interesting discussion. I open it up to the participants, first. All the interesting participants on the line, help us out. All right. I guess then we'll open it up to the general audience. We'll take some questions, and if there are not, we will proceed with the presentation. Mark: This is Mark Richards and we have received one question. What is the net value of PAR? That is, several authors assert many benefits of PAR, but there are few empirical studies studying the effects of PAR on the research process and outcomes? Peter: That's a very thoughtful question and I think I will turn to the experts for that who probably will have an interesting response. Glen: Peter, I was thinking you might want to answer that one. That's a very good question and really to be honest with you, Monika and I have been doing a lot of literature research in this area and there is a number of other people in Dr. Black's group in Iowa as well as some others around the country are starting to look at PAR in a more system mat particular way and in a more investigative way. A lot of times when we see PAR, we really see it in more of a descriptive or anecdotal fashion, saying we really think it's beneficial. It's really helpful, but when you really try to say, okay, where is the empirical evidence, where is the evidence that we can really see cause and effect? How do we know that this is really better or if it's just more of a -- just something that's nice, like waving a flag or eating apple pie or something like that. I do believe the jury is still out. I personally believe that PAR works and I've seen it. I know some of the studies we've seen people have reported more descriptively, the Turnbulls, for example, and Monika will talk about that a little later. And PAR as really influenced the research process to make for better outcomes. I do believe there is need for research to really look -- and you can do some studies, almost duplicate some studies where you have two different studies, one with kind of a PAR influence and one without to see really what was the net gain or net effect. I still think that research needs to be done, unless, Peter, you and your shop are aware of others that have been done. We need to push this and really try to verify the -- really prove the value of PAR. Peter: You've raised two very important underlying themes which I will touch on again and emphasize in my view. Number one is qualitative, quantitative or PAR research, whatever you call it or whatever you're doing is not necessarily rigorous or credible. I mean, you can have qualitative research that's not credible, i.e., not scientifically rigorous, and you can have quantitative research that's just the same. The form of the research doesn't necessarily document it's value. Is one point I would add. And number two, I think you raise a very good point, these research methods are often compliment ri, and it need not be the case that PAR or qualitative research is just hypothesis generation. It can be hypothesis proving as well and there has been quite a bit of work on that as you know in the social science, when the Cooke and Campbell, the quasi- experimental research studies. What I would say is most value in what I'm hearing you say is that this procedure can be done in a scientifically rigorous and credible way while at the same time it contributes to grassroots change in the community we're all talking about here. Heather, would you agree with that? Heather: Absolutely. Monika: Dr. Blanck, just to throw in my two cents, I wanted to emphasize what you just have said in a slightly different -- from a slightly different angle. I think that it's important for researchers who are interested in PAR or students who read about PAR to know that as you have said, the research type or research kind, whether it's qualitative or quantitative still has to be rigorous because just adding onto your research design, a couple of participatory elements is not going to make it good. I think, again, it's sort of thinking about from a scientist's point of view how to design your study and then implementing or juxtaposing, maybe, onto that participatory elements. I think that would be a very good hybrid. Peter: I would agree with that Monika and then we'll get on. That is something we all know as well that social science and hard science for that matter is a cumulative process, no single study is definitive, and the whole idea is to develop multiple studies and multiple perspectives and multiple methods of which PAR can be one very credible approach, and I think that's what we're trying to emphasize here as well as its strengths in its tie to the action research module which we're talking about for purposes of this project. Glen: If I can jump in here, we've got a little bit more time here, when you think about PAR in one sense, I don't mean this in a bad way, but it's been kind of ghettoized. If you look at a grant, are they going to say we really want more PAR influence in what you're doing here. I'm probably treading on political ice here, but the point is I think when we think about research that's being done, and in the interest of the general public, right, thinking about what are the goals of that research. I think sometimes people that are more -- what they might call hard scientists, whatever that is, may think do you have any consumers anybody involved with it that is biased or contaminated or whatever? I think they can be really informed in our research, we feel it's very important. So I think if you look at the aids research that's been done in N. I. H., part of that has been influenced by a particular group that's really trying to emphasize more work in that area. So I do believe -- and we look back in our own research field in as early as 1968 that one of our colleagues has talked about -- and what he calls social validation. Monika are you going to talk about that later on? Maybe you can step on that for just a minute. Monika: Sure. Sure. Social validity is basically an -- to the extent to which the research goals are relevant to the consumers, the procedures are acceptable, and the results are significant. So, in other words, you can have a perfectly fine designed study whose goals are not really have interest to the consumers. Procedures are too laborious or take too much effort and then although you might get results that are significant potentially statistically, but are clinically not significant. So social validation again is by designing socially valid studies, what we want to achieve is results that can be actually used by consumers, intervention that is can be used by consumers for long periods of time -- that are also sustainable. Caller: I have a question. This is Marty Blair, I'm with the assistive technology program in Utah. This is a wonderful discussion. You have talked quite a bit about the design and the structure of research. I was wondering if you could talk about PAR with respect to dissemination of results and the benefits when it comes to application of those results to affect change. So -- PAR beyond design but it's effect on dissemination. Peter: I'll let you run with that Glen. Glen: Marty, thanks for that question. We will actually get to that in a little bit. We're going to talk about the consumer empowered team and I believe Heather -- we're going to talk about that in maybe about 20 or 30 minutes away from here, but there is a figure of that -- that will be on your screen somewhere within the website you can look at. Right now what we'll talk about -- Monika is going to talk about applications of PAR and then we would get to the issue of dissemination. A very crucial part of the PAR process. Peter: Okay, Monika, would you like to proceed? Monika: I would like to proceed, thank you for asking. Okay, as I have said in the first part of the presentation, there are differences in how researchers define PAR; but despite those differences, there are several commonalities among the majority of PAR projects. And I will try to briefly describe those commonalities. They include meaningful consumer involvement in all phases of the research project. They also include power sharing between researchers and consumers so in other words both of those groups contribute equally. They share decision-making, they share the resources both intellectual and physical. Another commonality is mutual respect for the different provinces of knowledge. They have said academic knowledge and experiential knowledge. Another commonality is by directional education between the researchers and consumers in participatory studies, you have a co-learning process going on. We learn from one another, consumers learn from researchers, and researchers learn from consumers. Another commonality is convert the fact that results of research are converted into new policy and programmatic and social initiatives. So there is a balance between the research and action. Another commonality is empowering process through which participants can increase control over events of importance to them. And lastly, the common element is the fact that PAR stands in stark contrast to the traditional research, the paradigm which where participants are treated more as passive objects, not active participants of the research. Peter: Can I just say one thing here, Monika, even in the terminology in the literature, we've been working hard -- if you read some journals they will use the term subjects instead of -- instead of calling a person a participant, they call it a subject. And we've been able to -- that terminology is being changed in of the publication manuals for the American Psychological Association. We're working very hard to try to change the professional view of how they even talk about the people that they're working with in their research instead of having something kind of subjected to -- really you're an engaged willing participant. Monika: We also feel that it's important to know that PAR literature spins the social sk sciences and examines issues. It has been used in anthropology, applied behavior analysis, business, community psychology, disability research, education, epidemiology, and health promotion. And we would be able to list many examples of participatory studies that have been conducted in each of those disciplines, but for the purposes of this webcast, because it focuses on the disability and rehabilitation research, I'm going to present three examples really briefly of studies done in the disability field. One of those studies was conducted by actually graduates from the program here at the University of Kansas, the authors were Balcazar, Dr. Seekins, Dr. Fawcett and Dr. Hopkins and what they did is they looked at how to empower people with physical disabilities through advocacy skills training. So here the participatory approach was used with people with physical disabilities. Another example would be a couple of studies and publications that were produced by researchers again working here at the University of Kansas at the beach center. They, on the other hand, collaborated with parents of children with disabilities. What they looked at is val waiting parent to parent programs. And the last example is again research done by Danley and Ellison, and they have collaborated with people with psychiatric disabilities and they looked at their career paths. So these would be three examples of participatory studies done with different people, different kinds of disabilities. And then the last part of my presentation, I wanted to talk -- although we have already talked a little bit about the methodology, I wanted to sort of emphasize one more time the fact that PAR may use both, qualitative and quantitative data, which again reflects basically diverse methods that can be used with participatory studies, and some people might think that it's a weakness, but it's actually not, we feel. We feel that the different sources of data offer different ways of knowing. And rather than seeing those different methodologies as being in conflict with one another, we'd like to see them as being complimentary of one another. Because if you use multiple methods or rather using multiple methods might be essential to both understanding the nature of the phenomenon you're trying to investigate, and putting that under standing to practical use in real life circumstances. So basically using both methods would be very helpful to bridge the gap between the research and practice as large as you can. Dr. White: Glen: Looks like we're a little bit ahead of time. Peter if you allow me, I would like to talk about a nonexample if I could. Peter: Yes, may I make one comment though while we're fresh off of Monika -- I applaud you for that approach. Two things came to mind, number one, obviously all research, whether it's quantitative or qualitative brings a perspective to that study. Some might call it a bias, and I think what's interesting in what you guys are saying which is true in all science, Glen, as long as you make explicit those assumptions, then that's really how people can evaluate the research and that's how when a lot of research is stacked up together you can more effectively evaluate the whole field. On the quantitative side there has been -- and hard and soft science -- recognizes there is too much emphasis on this level. As we know that's often not relevant when you look across many studies and often that is just a function of sample size. So this feeds right back into your comments and Monika's comments as well that we're not talking about PAR in isolation. We're talking about it as an effective method in the context of broader social science change. Glen: Absolutely. And also the important -- you think -- if you do some research that says you come with the P. value of this, that could be translated into public policy which could affect thousands of people's lives just on the basis of one stupid little P. value instead of more broader clinical outcomes. Just a quick nonexample, when I first did research -- and a lot of times, ladies and gentlemen, as researchers not all of us but some of us -- or some researchers will take and they think what they have is a solution, they've got a magic bullet, they've got some kind of sure fire intervention and they're looking for somebody to apply it on. And I've got this and I really want to find a population I can do this on. It's kind of really backwards. Instead of really going in to listen, listening to the individuals affected by certain problems and saying what are the context and the issues you're really facing and working with those consumers to figure out what it is we need to do to help you remedy whatever the issue is that you have in a way that's acceptable to you. That's the best approach. Really going in the role of Warner. And working on my masters thesis many years ago, I was working with some young kids with spina bifida, and as they aged one of the problems they ran into was developing pressure sores. I've been in a wheelchair for years myself. So I know that's an important issue. I thought how can I get individuals to do more frequent wheelchair push ups. That's one way of helping to prevent pressure sores, not the only way, but one way. I developed a little watch that prompts them to do wheelchair push up for three seconds or longer every half hour and if they didn't, I had a little sense sore under the cushion attached to the computer that measured how often they did it but also a little alarm that went off. It sound like a microwave alarm and they could postpone that every half hour. If you look at the data, it was very effective in changing their baseline level of push ups every half hour from 22 percent to almost 90 percent. Now, a scientist would look at that and say, wow, that's great effects. The question I had to ask myself as I reflected on it, does everybody -- and I know many people listening here have involvement in assistive technology, but does everybody in the United States want an alarm on their wheelchair? I think that that was maybe a little bit hackneyed. I was thinking about science and how does one go about manipulating the environment to solve problems. If I had to do it over again, I would ask participants, what are acceptable ways for you to increase a certain type of behavior. I think that's where PAR really helps to inform science. Okay, we're going to talk about benefits of PAR. So one of the things that we believe -- as I just mentioned, it's not just the rigor of the research, but it's the relevance of it. How relevant is the research to the lives of people with disabilities? We know that there is a lot of money that's being spent, not enough though I don't think but in the area of disability research, and some of it's focus tends to be on cure, but there is a lot of us left here that we need help now. You know, we can't wait for the cure. So we need to think about day to day independent living, how do we go about making our lives healthier, allowing us more independence, more choice, all those different things we believe in. So we want to not just increase the rigor, but the relevance of it. It helps us to really think about more pertinent research questions. That's what really gets the whole ball rolling when we think about research questions. So I think consumers and consumer experts can help inform us. What are the questions you're really interested in answering. We had a conversation yesterday with Shannon Jones. She's the director of our SILC for Kansas and one of the questions I'm interested in is how can we determine what the net impact for IL services is in terms of being cost effective. Not an easy question to answer, but those are the kinds of questions that researchers really need to be thinking more about. PAR also helps shape user friendly instruments. So we may have certain ways of measuring things, but consumers can help teach us more about, well, have you thought about doing it this way? Or have you thought about doing it with this population or under these conditions? And the same thing with more acceptable interventions. The beep and lift, the little alarm thing I had, that may not be something everybody really want strapped to their wheelchair. More thorough data analysis, really holding us accountable about the interpretation of the data that we get from our research findings. Improved credibility and validity of research as well, to be able to validate what we do. And I think also increased utilization and sustain ability of research programs. And that's kind of to a certain degree where dissemination comes back in, Marty, when we think about who are the champions of the research that we do? If it's guided by consumers and they really feel satisfied that we're work nothing a direction that's very helpful for them, they're going to be more likely to say this is something that really works and this is -- it doesn't come off so self-serving, we as scientists or researchers say, well, talking to policymakers, we really think this works. You really need to go back to the people that are the beneficiaries of it and they are the ones that can argue with credibility the importance of whatever outcomes there are. And then I think the other thing that we're just really starting to tap into right now is this whole issue of enhanced empowerment of consumers. One 6 our colleagues talks (Inaudible). And you they're doing research but they're really not involved in the process at all and we want to avoid those relations. We really want consumers to be involved in this whole process. What are the challenges of PAR? Well, one as we know is it costs more money. It's something if you're going to really do it right, it's going to take more time and more money. So both of those are important challenges. And then this issue of balancing scientific rigor with (Inaudible) to people disabilities. As researchers, let's say if we're doing a grant, there are certain standards that we're held to by our peers as far as -- in terms of what's acceptable from a research orientation. But also we cannot do that to the neglect of thinking about how relevant our research is. When I do research grant, one of the things I ask my co-investigators, one of the things you have to think about at the very get go, you have to ask this self this question, how will this benefit the end user? What is the relevance of this? How does it help the lives of people with disabilities? These are questions we have to ask at the very get go to work to get to that point. I think power and control of the research process -- this is still an area that we're still feeling our way in it. How much control does one give oral how consumers in that research process. We do think it's something they need to have some influence in the process and there is a whole con continuum of that range that's being discussed right now. Kind of related to that is the methodological tensions in the research process. We think about looking at how does one go about maintaining experimental control. Keeping a research project pure in a research sense and yet recognizing that we need to be -- let's say if we're doing something that's experimental control group designed. The group gets the intervention. You've got a control group that's waiting for the intervention. If it's something that's very serious, you don't want to prolong that very long because you want to make that available to everybody if it's really beneficial. We know that that's happened many years ago in Alabama. There was a study on Syphilis and there was some sharecroppers and they had Syphilis and they were following them over a long period of time. During that time, they found a penicillin and that was the cure for Syphilis. And they withheld that from the sharecroppers. It caused a whole lot of problems, death, a lot of cognitive problems. That's what caused the whole research institutes to really reevaluate what's informed consent. How do we protect human subjects as they say. So that's very important. Conducting PAR without marginalizing consumer collaborators in the process. There are a lot of people who use the buzz words of PAR but it comes out as more tokenism or window dressing and I think that's something that Peter and his shop and us and folks from ILRU and other centers around country that are dedicated to this really feel is important. I don't want to be -- let's see if you have a five-year grant and you come at the first year and they say this is what we're going to do and they invite you back five years later and tell you this is what we did. What dmru do you have in the process? So we really believe there has to be more of a dynamic exchange in that process, not just a hello and goodbye. I think the other challenge and then I think we'll get into a little bit more deeply is this lack of methodological descriptions about how to actually conduct PAR. How does one actually systematically conduct PAR? A lot of people talk about it, but how do you do it? And that's what we're going to go to? Just a few moments. First I'm going to give the mic, if you will, back to my colleague Peter. Peter: Thank you. Even though Heather is saying no, I'm going to get her involved. She's the real force behind this project and I hope all you guys get to know her and I hope we get to see each other face to face. I hope that hes calls will lead to more interesting conversations and that's really the point of what we're doing here. So Heather, why don't you lead this point. Heather: Well, several excellent points, Glen. Let me open it up once again to the participants for questions that they may have of our presenters and once again, please identify yourself and where you're from. Are there other questions from the folks that we have on the line? Glen: Just wondering if there were any from that assistive technology issue I've got or the issue of PAR influence in even looking at -- there is a lot of technology out there right now and how much is really being designed or influenced by consumers. Heather: That's an excellent point. And certainly some of the technology for independence projects are looking at questions -- not that are not specifically to that point, but are similar to that point, that there needs to be much more consumer involvement in the design and development of assistive technology that meets the needs of people with various types of disabilities. All right, do we have any questions, Mark, that have come through on the web? Mark: Well, I've got two, and I think they're about what you're about to talk about, but if I could give them to you. One is, if we were to conduct a study, what would be the variables we would measure to see the effects of PAR? You want the other one? Glen: Restate the first one again. Mark: If we were to conduct a study, what would be the variables we would measure to see the effects of PAR? Glen: Well, we could kind of talk that one out a little bit I suppose. There are going to be some effects that are going to be more like social acceptability of the project, you know, how simple was that projector the outcomes to consumers. Let's say you did one with PAR influence versus not. What is the net value or as far as buy in maybe or willingness for people to be involved in disseminating it. Also I think Monika, your understanding of the literature, talk a little bit about the construction actually of the research project. Maybe talk about that. (Inaudible). Monika: Let me think just for one minute about that. The variables that we would measure for a study that looks at the effectiveness of PAR. Well, if it were an intervention study, I would assume that, first of all, you would want to measure the effectiveness of your intervention. What you could also measure is if you had participants collaborate with you on the design of an intervention, at the end of the study, once you have established that this intervention is indeed effective, what you could do is you could measure participant's preference for this intervention versus another intervention that might not have been designed based on their feedback. So basically what I'm trying to say is that a lot of the social validity assessments are conducted by asking participants. And of course that kind of feedback is very valuable, but another way to find out about what participants prefer, what consumers prefer, is just by giving them a choice. And I think that it would be a very powerful demonstration that I assume they would prefer the intervention that they helped build. It would be a very powerful, to me, demonstration of their preference. Glen: I think maybe just adding onto that, you could look at other variables such as how much does it cost? A lot of times when we're doing research and you have a lot of money to throw at a problem, but how does that generalize or when the research dollars go away, how does that really maintain? I think sometimes consumers have a really great idea or ways of saying no we don't have to do it that way, we can do it this way and it won't cost that much. Or maybe in terms of energy expenditures, or whatever. I can imagine where -- just really thinking through what are the actual outcomes of this research that you're doing. We were talking among ourselves here and one of the things we thought about from more of an occupational therapy field, not to pick on O. T.'s, well, gee, we've got this really great way of training, people that are C5 quadriplegic, they can get dressed in the morning and they can get dressed all by themselves. Well, we have to think about what are the implications of that particular research, right? Here you spend an hour and a half getting dressed in the morning, but you're so shot you can't go to work or do anything else the rest of the day, so we have to think about what is the effectiveness of the interventions we're doing in the very first place. The consumers can help us be informed what is the value. Peter: Glen, this is Peter. A lot of times in universities, you have to take your research, as you guys know before human subject committees and what's called institutional review boards, and a flip side consideration that I and others have written about and I know you've thought about is what are the risks in terms of an ethical sense of not doing the research or the costs of not doing the research? You know, how will that hurt the community? How will that not further an idea and I think you can sometimes make some very compelling arguments in addition to perhaps benefits of doing research, what might be the cost of not doing it. And have you thought -- have you come across that concept? Glen: No, not at much -- I mean, I think you've raised a very interesting point. I don't know for some reason -- I think -- I'd like to have people weigh in on this. Some people in the disability field kind of wonder what is the value of research? Why do we need it? Why not just take that money and use it for advocacy? And believe me, I'm one of the biggest advocates. I'm a very strong advocate. I've filed suits against the American public health association, the Kansas City Royals. So I really believe in that but I think sometimes we really need to recognize the value of research and the value of research that has yet to be funded. So I think you bring a good point across. Peter: Glen, as you know it's not and all or nothing question. And certainly it depends on the political environment and the social environment in which you're using the research. For example in testifying before Congress, they increasingly have looked to these sort of cost savings analyses with regard to outcomes and to a large extent, frankly, this is where many economists of over quantified in my view some of the results and we've lost the richness from rigorous qualitative research that I think is also haver valid. Glen: In the past we have flashed the chrome as I call it and I think just recently in Washington I was reading that they succeeded in wanting to talk to John Ashcroft, they were able to talk to his deputy to get some changes made. But I think also in addition to that, it's not all or none, but another part of our tool chest, if you will, is being able to have some research that really can support the direction and the facts that we want to go. We take people out of nursing homes, have them live more independently in the community, it's in fact going to have this positive effect tore change. So those things are really very important and I think the community is starting to learn more about that. Heather: Okay. Well -- Mark: Heather, I've got one additional question that I can ask. This came from our friends in Logan, Utah. How can we design and know on you project/research goals before we start the project when things will probably change when PAR is employed? And in especially regarding the questions in module 1. Heather: Glen, would you like to address that? Glen: Heather, I wonder if you want to look at that with respect to module 1. Do you feel comfortable with that? Peter: We can certainly speak to that. I can certain. The questioner raises a very good point. To some extent all research is a snapshot at a particular period of time. We've all been in the position where we've written something and perhaps by the time it's published it's already out of date. That doesn't necessarily mean it didn't contribute to the debate or it didn't provide an important starting point. My own personal view is that if the design is good and it's capable of being researched, then it should be published, and by definition, sometimes the circumstances will change at the time that comes out or in line with the speaker's question, sometimes the circumstances will change particularly in action research. And that change is, of course, data unto its own right. That change and the way of measuring that change, which is what Glen and Monika I think are going to talk about are important pieces of information which makes this research perhaps a little more complicated than more static quantitative research where you're, say, measuring unemployment rates at time one and again at time two and not looking at many intervening. I'll defer to Heather in just a second. Part of the answer is making explicit the assumptions going into the research and the environmental pressure and changes that's go on and that's all part of the write up that's going on. Heather, would you add to that? Heather: Yes, I think more like qualitative research where you're describing the process and how things have changed within the design as you go through the process because it's more of a team approach. It's not a single researcher designing and conducting the research. Peter: Yeah, and again, change is not necessarily bad nor good, it's a component of this research that needs to be measured systematically and then when that is done, that can lead to an understanding of perhaps why the outcome is not what you expected or perhaps what you predicted is not what you predicted or maybe your underlying assumptions were wrong. That's what Monika referred to earlier when she quoted Lewin with this spier al where one outcomes leads to another. Glen, Monika, what would you say to that? Glen: Great. Monika: Well, actually if I could have the question repeated one more time. I think I got it right, but just for clarification, would you please repeat the question again. Peter: And you can take it on right from there, Monika. Mark: Sure, how can we design and know our project/research goals before we start the project when things will probably change when PAR is employed? Especially regarding the first questions in module one. Monika: Thank you. I think I got it right but thanks for that clarification. Again, I think that it's important to realize that things are not going to be set in stone. Again, because going into the project I think researchers who are interested in participatory research acknowledge that there might be -- there might be some changes as far as the research goals because you're taking your systematically evaluating consumers input. I think another thing that I wanted to add to that is that sometimes what happens is that for researchers, you know, grant proposals are being announced and researchers who are interested in participatory studies might not have enough time to research consumers, relevant consumers, to ask for their input. One of the strategies I'll talk about in just one minute talk about the strategies for PAR implementation. But I think one of the strategies for researchers interested in this is to have ongoing relationship with consumer groups or organizations. So that you have an idea what the research goals can be. You can talk about it. You can change them slightly with the consumers and then when the grant announcement comes on, again, you don't scramble to find somebody to talk to. You already have an idea. Glen: One thing, too, maybe I think certainly we wanted to bring consumers a long. I think the other thing, two, NIDRR and others are starting to recognize is how do we go about grooming and teaching people with disabilities how to become researchers, to kind of grow our own, so to speak, teaching people with disabilities to be able to actually be involved in directing research and overseeing it. I think that's really important. And I know that our respective RTC, Research and Training Centers are involved with this conversation are really committed to doing that to bringing in people. Part of my research group on rehabilitation research group is to bring people in with disabilities and to train them. And also NIDRR has a new program on what they call NIDRR scholars where right now we have 200 graduate students, one is a young woman from Brazil that's blind and another young lady, 19 years old that's a paraplegic that's just starting to come into our research and kind of see what it's about. Peter: I think we need to expose people -- this could be another area that you could influence, you know, public policy and help improve the lives of people with disabilities. With that I'm going to turn it back over to Monika and she's going to discuss more about systematic strategies for implementing PAR. How the heck do you do it. Monika: I think I have a daunting task ahead of me because I don't have a lot of time and a lot of information that I would like to talk about. But again, because of the interest of time, I'm not going to go into detail talking about the system mat particular strategies for implementing PAR. And Dr. White and I have an article that hopefully is going to be published in the archives of physical medicine and rehabilitation that goes into great depth talking about the four strategies. So we encourage everybody who becomes interested based on our webcast today to seek that article once it gets published. But anyway, back to the topic. The four strategies for system mat particular implementation of PAR are, number one, participant selection and recruitment; number two, role and relationship clarification for researchers and consumers; number three, research team education; and number four, management and support. I will go into just a little bit more detail for all four of them in a second, but I wanted to make sure that the audience understood how we came up with those four strategies. Basically, based on the review of literature, we noticed that there are no -- or very few clear descriptions of how the participatory nature of a study was conducted. And we became interested in that aspect because, again, if sometime down the road researchers want to evaluate the effectiveness of PAR, they need to know what PAR as an independent variable would look like. So you would need to have those strategies. Based on what we have read, we looked at the different things that researchers, participatory researchers have done and we categorized those things into four groups and that's how we came up with those four strategies. So back to number one, which is participant selection and recruitment, we feel that there are several activities that you might do to select relevant participants and recruit them successfully. And I purpose fully put an emphasis on the word relevant because researchers need to collaborate with relevant consumers. Who are the relevant consumers? Based on that -- on the document that NIDRR published in 1993, the authors of that document report that any person that is -- or entity for that matter that is a director indirect beneficiary of a research project should be regarded as a potential PAR team member. A team would consist of different people. It could be funders, researchers, consumers, consumer families or service providers. And, again, it's important that (Inaudible) as possible are represented. So the PAR team should be composed with attention to diverse it among different members with respect to power and authority in the program, philosophical orientation, political agenda and demographic markers, like race, class, gender and age. It's important, though, to remember that working with a variety of stakeholders may present challenges because, again, it increases the complexity of research planning and may establish -- may make establishing common ground more difficult. So just as one quick example, if you, for example, had a project focusing on reducing secondary conditions for people with spinal cord injury, you might want to include in your team people who have spinal cord injury and secondary conditions. Their family members or caretakers, researchers, clinical educators, product developers, rehabilitation engineers, service providers, policymakers, advocates, et cetera. One thing, though, to keep in mind is that the voices of the primary stakeholders, which in this case would be people with disabilities who have secondary conditions, don't get drowned. So make sure you have adequate representation of those people. Another thing as far as participant selection and recruitment and Dr. White had already talked about it, so I'm not going to dwell on it is that when you -- when a researcher wants to gain access to a group or setting, do it in a fashion that demonstrates respect and equality and not again what we call experimental colonialists. When you establish a relationship with participants, make sure that it's based on, I guess, it's a genuine relationship. Make sure that you take part in informal events as a researcher, meetings or activities, maybe being on a first name basis, being authentic. Even, you know, little things, like celebrating each other's birthdays. They might seem like silly things, but they really diminish the unnecessary we feel formality and (Inaudible). As far as number two, role and relationship clarification, we think that the first thing researchers might want to do is to define the scope of PAR. Meaning that a lot of writers who talk about participatory research says that full participation is not possible in every situation, and the scope of PAR was varied depends on the nature of the question, the research question, the experiences of the participants and the experiences of the researchers. So you might want to look again at the scope of PAR and a couple of the examples of continuum of participatory research involved, for example, as far as consumers are concerned, their roles can vary from restricted involvement to high involvement, but moderate power sharing, to full participation and control of the research process. Researchers' roles, on the other hand, can vary from being experts who consult with a consumer advisory committee to being collaborators or who control decisions, a long with funding agencies, to finally being members of the team that collaborately shares power on decision-making. So we feel that the first step is define scope of PAR, what's feasible, in other words? Another thing that you might want to do is to define member roles. Several authors say that the roles have to be clarified as soon as the project begins. And in further studies, researchers should be viewed less as experts, professionals, and principal investigators and more as consultants, facilitators and coaches. Consumers, on the other hand, should be viewed less as subjects and more as team members and participants, collaborators or co-researchers. For sharing of power, which again is a part of this second strategy, this is a tough one. It's a really tough one. Power is defined as the control over resources, decisions, actions and activities. And historically I don't have to elaborate really on that, but there has been power in balance between the researcher and researcher participants where researchers typically have hold most of the power. In contrast, PAR strives to diminish the inequality in power by encouraging the researchers to step down and relinquish control and the consumers to step up and take more control. We call it depowering, and some of the things that researchers might want to do to, again, accomplish this depowering is rotating leadership responsibilities, creating horizontal, not hierarchy structures within the research team, obviously encouraging substantial involvement of participants, so of people who have traditionally been under represented, providing tangible support so that barriers for participation are minimized and training and hiring consumers. So for example, consumers could chair committees and another strategy for, again, increasing consumer participation would be using vernacular language on the part of researchers. As far as the third strategy which is research team education, it's important to remember that one of the objectives for PAR is decentralization of knowledge. So simply put, knowledge -- so that knowledge is not private property of that group, but it's shared by everybody, and the decentralization of knowledge can be achieved by educating both the researchers and the consumers on a number of dimensions. And again, I'm not going to be able to cover all of them, but one of the things that researchers could be educated on is, for example, the reality that the consumers have faced and continue to face. Or, for example, social dynamics. They can learn about the social dynamics between the dominant and the traditionally marginalized groups. One other thing that we think researchers could do a little bit better job at is learning to talk in every day language. Basically, we think that using jargon, scientific jargon is yet another way of control, if you will, it's sort of language control. Some of the things that consumers could learn is the basics of scientific method and mechanisms for conducting well designed studies and again this is basics. We're not thinking of making everybody doctoral students, but just basic so that consumers and researchers can talk about the research they're both carrying out. Some other things that consumers could learn is, for example, identifying problematic issues, planning and conducting actions, evaluating the outcomes and conducting and leading group activities so that again this sort of goes with what Dr. White was saying about empowering of the consumers. They take control over events that the are important to them. And lastly, two sentences, the last strategy is management and support and all this talks about is that there needs to be some kind of a structure for conducting the research that honors PAR philosophy. On one hand, but on the other hand, also facilitates achievement of the research outcomes. And some of the things that can be decided upon is decision-making methods. So how are we going to make decisions? Is it majority rule method or consensus method? Conflict resolution, what do we do if we don't agree? How do we settle? And creating resources and payment mechanism to reimburse both researchers and consumers for the time and effort that they put, and obviously accommodating individuals with disabilities so that they can participate meaningfully. Dr. White? Glen: All right, thank you, Monika. So we talked now most recently to strategies to implement PAR. What I'd like to do is take a few moments here and talk about PAR in action. How does this really work? And I'd like to cite just some examples from our own center. I know that a lot of other centers that are out there are also starting to do this in different levels. In one of our articles on the consumers as collaborators in the research process, we have a small figure. Some of you may not be able to see it on the web. It's posted on the website, that's correct, now, Heather? Heather: Yes, it is. It's posted on where people came in to access the webcast. So if you go back to that initial page, it's posted there. Glen: And I'll describe for you that may not have a computer just what this is. I'm do it very briefly. Imagine, if you will, a circle in the center of this age have page, and from that circle in four I didn't directions there are arrows pointing away from it. That circle has a term called consumer empowered team and that consists of consumer consultants, advocate leaders and researchers, as part of that team, if you will, and around that circle and these arrows are a series of boxes and they have kind of arrows and it's going in a clockwise fashion. And we start out really with the very first thing we talk about is formulate thing research question. Now, either that's going to be formulated from researchers or from consumers helping them. That's the ideal. Or sometimes you get a grant or whatever that says we want you to do A., B., C., D., what they call priorities. And sometimes -- although not always, those priorities are influenced by consumers or they should be. So you have that research question you start out with in research. Then you want to prioritize what are the concerns and develop goals. What is the goals that you want to see or accomplish in that research? So that research question is going to kind of shape some certain things you want to accomplish. And then you want to think about, well, what do you want to do? What are the research procedures to accomplish what you want to do? And those should be really shaped by this consumer empowered team. Remember back I talked earlier about the little alarm I put on these individuals' wheelchairs. Well, if I had gotten a little information from folks, maybe I could have done something less object truce identify, maybe a vibrator that could have been more ep acceptable. Then following that you have the results. The team really helps you think about what are the results and what do they mean? And results we think about consumer valued outcomes. In other words, how socially important and relevant is this to me? How easy is it for me to implement? Somebody may have a great intervention, but it's so troublesome to implement or takes so much time or energy, it's not worth it. And then the other question to did is does this increase my quality of life. The consumers can give feedback on this. Another part is -- and this goes back to Marty's question earlier on about the dissemination. The consumers are a really important part of that process. Did they buy into it and are stakeholders from the get go, they can be champions to disseminate the product and really influence it. And then there another line that goes back again from the consumer outcomes box to formulating new research questions. So it's kind of a learning process, if you will. Well, given that consumer PAR team model, I want to share a couple of projects we did. I'll do this very quickly. We developed some secondary condition booklets, again, very interested in issues that affect the health of people with disabilities, and such as pressure sores or urinary tract infections or chronic pain or fatigue, aging with a disability, whatever. So we put together to develop a series of these books. Well there, is a lot of research out there that is not always so easy to understand or read. So we set about doing the literature search, finding 150 or 200 articles. We took those and tried to capture those in a way that was meaningful. We worked with a team of consumers that helped us think about what articles are important to me and whatnot? And then so we crafted an outline on that and fed that back to them and said does this seem reasonable to you? As we started this whole process of developing and editing this, we had a constant exchange with consumers in helping us shape this. So those were really developed through the paralyzed veterans of America and we developed 12 booklets that are very usable, not only by consumers, but we're finding a lot of rehabilitation centers want to have access to them as well. They were disseminated also by consumers always well and through a lot of different mechanisms and ways. In fact, thee are now in Spanish and disseminated in Spain and South America and Mexico as well. The second project was we worked with a local independent living center in oh sage city Kansas. And we wanted to develop -- when we talk about research what does it mean? When we talk about reliability or any of these terms, what does that mean? Well, when we went down the meet with these consumers at this center -- there was about 20 of them around the table. The research wasn't even on their radar screen. What's the value of research? So when we went down there, our response was, wow, we've got to start something different. So we came down in a sense with one kind of an agenda that we wanted to accomplish and after listening to consumers, we recognized that we had to think about a whole different agenda. They really helped shape a whole new research project we never thought of. As a result of that we wrote what's called the KNOW way guide. The KNOW way guide, teaching consumers or other interested advocates how to use research as a way to create change in policy, practice and procedures. And so it's got a story about this gentleman and how he went about making some changes in his community, addressing his personal disability concern. So that's another example of how the consumer PAR team changed a complete project for us. So that's kind of PAR in action just very, very briefly. The next step as we are starting to wrap this up, where do we go from here? And one of the things we're going to be doing -- I've been involved with -- it's called the disability forum in American public health association. One of the things I'm going to be doing in this next meeting in San Francisco is having a forum on PAR and disability and health. How do we go about thinking about PAR and really getting consumers involved in the process when we think and talk about health? So there will be a whole session on that. Monika talked about this article that is that we hope is going to be coming out, and then we do still want to work on this research where we can help provide people in independent living centers and other centers just a very easy understandable guide about what does research really entail and how does one really think about it and evaluate it? We're not going to turn people into rocket scientists or researchers, but we'll give them a basic understanding of research and how it really works. That's going to be coming out probably within the next few months. The other thing I think we really need to think about in terms -- we've talked about PAR all day today, but another thing we need to think about in other arenas and areas, I heard somebody term -- I wish I could say I coined it, I did not, but pat, we've got PAR, pat, participatory action treatment. How do we empower people, patients, whoever, that are working or interacting with rehab individuals or physicians or whatever, to have more of an advocacy and advisory process in that treatment. So that's an area that I would like to see us go into a little more. In an earlier conversation I thought when you think about rehabilitation and rehab people to go back out into the community only to come back in maybe one month, two months later with a severe pressure sore, something like that had happened in the auto industry, Peter, you know as a lawyer, when Ford had the pin tows that kept blowing up, what did they do? They had a massive recall. When is the last time a rehab center has had a recall of patients when they have not given them proper care and treatment? So this issue of participatory action treatment I would like to have us collectively explore. With that I'm going to turn it back over to Peter and for any kind of final Q. and A. and wrap up. Peter: Well, thanks, you guys, that was a fascinating discussion. Heather may have a few final points we do want to take any comments from the participants or those on the line. So I want to thank you both and I want to thank Heather for helping organize and really being the im pet us behind what we do here and turn it to her for any closing remarks and then open it up. Heather: I'd just like to thank you, Glen and Monika for the discussion today and for being presenters on our first webcast here of the Community-Based Resource Center. I'd like to point out that of course the CBRC has a website. There is a public discussion board on the site. We invite you to participate in this board. Likewise, you can join an E-mail list that would give you updates on activities and different notices about activities of the project. The trainings will be three years. There will be three opportunities -- well, the first one is this year. There will be two more opportunities to participate and they include webcast, the online modules and an online symposium and the purpose of the trainings is to bring disability-based organizations, individuals with disabilities into the research process, not simply as participants or as subjects, but instead as really participants in the research process of design and use and so forth. So I'd like to ask if there are any questions that participants have that are on the line? It doesn't seem so at this point. So I'll turn to Mark to see if there are any that have come in over the web. Mark: Yes, I've got two very good ones. Heather: Excellent. Mark: One, what can you say specifically about good approaches for implementing PAR in technical research, e.g., engineering? What resources do you recommend for technology researchers as guidance for how to go about implementing a PAR approach? Glen: Let's take those one at a time. Mark, I'll have you ask that second one in a minute. Give us the first question one more time. Mark: What can you say specifically about good approaches for implementing PAR in technical research such as engineering? Glen: Wow, I remember a discussion on this with some engineers from sandia labs and one of the things I think is very critical, if you look at a lot of the research that's out there right now and you look at the technology that's out on the marketingers we're just finishing up an article that we're submitting looking at assistive technology unanticipated as a cause of secondary conditions because it's never been fully analysed or looked at from a consumer's point of view. I think their buy in and help in shaping this is very important. There is an article in talking about usability of assistive technology and I think getting consumers involved -- now they may not know all the technological processes like stress load and all the other things, I certainly don't know. I'm not an engineer, but they certainly can speak from their personal experience in just trying equipment to see if it really works or not. I think we cannot negate that personal experience that individuals have to shape that from the very -- especially if you have a flawed design from the get go. Then it's just going to be a house of cards as they go a long. I think that involvement is very critical. I don't know if, Peter, you want to add into that, your shop. Peter: No, I was actually enjoying listening. I wouldn't add anything else. I'm just amazed at the expertise that we hopefully have drawn together and this discussion process will be very much a cumulative process and we'll continue to answer and address questions as we go, very much like one the questioner asked. This process in itself is I guess changed process, wouldn't you say, Heather, and something we hope will be of value to the whole community. Heather: Right. Absolutely. Glen: Well, Mark, the second question? Mark: The second part of that question I think you might have partially answered. What resources do you recommend for deck knoll gi research es as guidance for how to go about implementing a PAR approach? Glen: There is a lot of emerging literature in the area of PAR. Monika is going to go and grab a little article real quickly, but I really feel that there is an emerging -- this is really I think a convergence. I'm sensing that there is a lot of opportunities that are going on, more and more people are thinking about this issue of PAR and if you look at even the national council on independent living, if they had some information on the PAR as an important part of the long-range plan as well. Let's see, Monika, why don't you go ahead and do this. Monika: I just ran so I'm a little out of breath, so please excuse, but what I brought is a printout from a website that basically has many -- probably around 20 -- links to participatory action research sites. So it's not specifically for engineering, but I think this person might want to take a look at them. So I'm going to really slowly say the website address. Is that okay? Would you prefer that we E-mail that to you Heather and post it on the site? Heather: That would be fine because we have resources oat site and there are going to be more coming on their way. Glen: Why don't we do that for the requester of that question. We will E-mail this to Heather and we'll post this right on the site as one of those sites you can actually get more information on PAR. Heather: Was there a second question, Mark? Mark: Yes, there is if we have time. I think we do. I'm a researcher at the institute for community inclusion. I'd be very interested to know whether the process of PAR is' affected at all if a researcher is also part of the consumer group with which the research is concerned? A researcher with a disability or who may have a somewhat closer connection with part of the population in a particular study? Glen: That's a really excellent question. As a person with a disability myself and several of on our other people here working have disabilities. We struggle with that. You say is it good enough, and we have people here with disabilities that are working in the process, and I wonder about that. It dose back really even if you talk to people with the independent living movement, what is a true consumer, right? Is that a person that's really consuming services or somebody that's working at a center? So there is a whole lot of philosophical discussions one way or the other, right? My sense and what we believe, and certainly adding to the richness and depth and understanding of the nature of problems and what they are and what they really hen. It's certainly a plus. It's a tremendous plus to have people, staff researchers with disabilities and I believe it's just as important to invite and bring in other people with disabilities who are right out there on the front lines facing these issues and problems every day. In fact, there are researchers who in fact are doing this. They have problems or situations they're dealing with every part of their life, daily experience as well. So I wouldn't say eighth ee either important, but it's really both. Monika, do you have anything to add to that? >> Monika: No, it really sounds to me like a pretty good situation to be in where a person has sort of, again, as we refer to it the experiential knowledge as being a person who actually lives the life and lives some of the problems on one hand, and on the other hand has sort of research background so that this person can contribute also to the process of doing research. So I think it's a very good situation. Heather: Excellent. Well, with that, I'd like to wrap up the presentation that we've had today. It's been an excellent discussion and would like to thank once again Glen and Monika for joining us. I would also like to thank the CBRC would like to thank NIDRR for their support for the Community-Based Resource Center as well as this webcast. In addition, we'd like to thank the project staff at both the Law Health Policy Disability Center, and at ILRU, Independent Living Research Utilization. And Mark, are there some individuals you would like to thank as well who are part of the webcast crew? Mark: Oh, yes, the webcast team who works so hard for this, Dawn Heinsohn, Marj Gordon, Sharon Finney, and Rachel Kosoy. And of course rob and Marie. Heather: Great. Thanks very much. And I'd like to invite people to our next webcast which will be in July and that webcast will be on introduction to research. Thank you all every one for joining us today. Mark: Thank you for having us. We really loved to be on with you all.