Virtual Town Hall Meeting: Consumer Professional Partner Program (CPPP) Presenters: Steven Towle and Thilo Kroll. >> LAUREL: Good afternoon. This is Laurel Richards with ILRU in Houston. Today's webcast will be on the subject of promoting health and preventing complications through exercise, a specific project of that Research and Training Center which has to do with a program in which consumers with spinal cord injury serve as educators to healthcare professionals, physicians, therapists, social workers, et cetera, nurses, RN's, most particularly with physical therapists -- students of physical therapy and medical students. This Research and Training Center, as I say, is the sponsor of this webcast. It's a Rehabilitation, Research and Training Center on spinal cord injury. It's promoting health and preventing complications through exercise. We at ILRU are partnering with -- are junior partners with the National Rehab Hospital, the Center for Health and Disability Research, and our partners today and our presenters today are Thilo Kroll and -- oh, Steve, I blocked -- your last name is -- >> STEVEN: Towle. >> LAUREL: Steve is a member of ADAPT and God knows what's going to happen to me now. Do you think there will be a demonstration in my front yard? >> STEVEN: Just take a deep breath and go on. >> LAUREL: The Research and Training Center is sponsored by -- and is supported with funding from the National Institute for Disability and Rehabilitation Research, NIDRR. And this town hall meeting today is to, as I say, examine one of the projects of the Rehabilitation Research and Training Center. And the basis of this comes from research -- fairly recent research that has indicated what those of us with disabilities have known for, you know, as long as we've had disabilities, and that is that primary care physicians and other healthcare professionals have really a very limited knowledge of our specific disabling condition and probably has very limited knowledge about disability issues in general. I mean, we know this just from access -- access issues, much less let's hop up on this exam table right now kind of approach. But this is an innovative approach that is being taken by the National Rehab Hospital Research and Training Center, and it has to do with consumers with spinal cord injuries serving as educators for students who are -- medical students and students who will become physical therapists. Thilo and Steve will do the presentation. As I said, Steve Towle is based in Washington D. C. and has long been active in a number of spinal cord injury associations, most particularly the National Spinal Cord Injury Association and has, Steve, I think until just recently has served on the state -- you were the chair of the SILC, were you not, in the Washington area? >> STEVEN: Yes, ma'am. >> LAUREL: Understands independent living pretty well and to top it off has been a long member of ADAPT, and you're kind of the Washington D. C. area -- is it president or chair -- >> STEVEN: President of the local chapter here in D. C. of National Spinal Cord Injury Association. >> LAUREL: And with ADAPT? >> STEVEN: No, no, there are no leaders in that group, just a member of ADAPT. >> LAUREL: The capital area ADAPT, I forget about legalitairianism. Thilo is at the Center for Health and Disability Research, that's also in D. C. and Thilo, I believe, you're the co-director of this Research and Training Center. >> THILO: Thanks, Laurel. >> LAUREL: I'm going to turn it over to you y'all and look forward to the presentation today. >> THILO: Thank you for the nice introduction. It's nice to have two of our strong partners on this rehabilitation Research and Training Center on SCI providing health and preventing complications through exercise here on the phone with us today, which is really nice that we have this opportunity through these webcasts and let me just say, Laurel, I think you have been involved also and ILRU has strongly been involved in hosting several of these webcasts and this is already the third virtual town hall meeting as we call these particular kinds of webcasts where we seek actually consumer input into all our research and training activities of our RRTC or research and training center. With that I would like to just really emphasize that the success of the RRTC really depends on consumers and we really build this as a participatory Research and Training Center. We really would like to have maximum input into all our activities from people with SCI in the community. And this virtual town hall meeting, like I said, is the third one. The last virtual town hall meeting looked at the design of a survey focusing on exercise and prevention of secondary conditions and with the help of your feedback and input, we were able to make the survey much stronger and much more focused on consumer concerns. That's what we hope to achieve pretty much the same thing today with this webcast and this virtual town hall meeting today where we're going to talk a little bit more about the training side and how we can improve basically education for healthcare professionals and also students of health care professions. We already -- Laurel already gave a good introduction of both Steve and myself. Maybe, Steve, you can add a few words about the Spinal Cord Injury Network and just give -- say a few words about what you are working with and maybe also give a few comments about your involvement in this RRTC. >> STEVEN: Sure. Spinal Cord Injury Network as I said is the local chapter for the National Spinal Cord Injury Association where we're real happy to be a part of the RRTC. I've been injured about 30 years, I'm a C-5/6 quad and I've been doing peer work about 20 years. The chapter has been in existence for about 40 and peer support has been a key piece of that ever since we have we got started. It's a nice fit with the RRTC in that we have an existing kind of cadre of peers of the it's not as formal as this tight group is going to be with the RRTC, but the folks have got a lot of experience and are going to work real well or have so far in the planning stages with the RRTC. We're glad to be part of the group. Thilo, I'm not sure what else you want me to say. >> THILO: That's kind of pretty much it and it's really a pleasure to work with the Spinal Cord Injury Network so closely and to really have this day to day input actually into our work and having a lot of conversations and both selecting people who will work with us closely also here on the hospital side as spinal cord injury educators who are life consultants as we call them, as well as involving peer mentors and a range of activities that this RRTC and SCI does. But to begin with, our presentation -- first of all, maybe we should address this question: Why should consumers be involved in teaching healthcare professionals and what is actually behind that idea? And Laurel, you gave in your introduction already a few observations based on research and maybe we can talk a few moments about that. The way we've structured basically today's presentation is that Steve and I will talk a little bit about this concept and then our program and then we really invite you to contact us by E-mail, so on and so on, and leave us with your comments, your concerns, your questions, your input and today during this webcast, but also in the weeks to come. So this is only the start of this communication and hopefully we'll have a two-way street here so we can improve this program as we go along. >> LAUREL: Thilo, if you'll allow me, I think I neglected to point out if people care to send E-mail -- send in questions via E-mail, down at the -- on your screen there is -- right under where the realtime captioning is taking place, there is an area that says click here if you wish to send E-mail or send in a question. If you you'll just click on that, then it will automatically bring up your E-mail program, preaddressed to us. Just type in your question and hit the send button and we'll be all ready to go, Thilo, when it comes in. Or later during a discussion forum. >> THILO: Thank you. That's helpful. Steve, do you want to say a few words -- I mean, based on your experience, why you think consumers should be involved in educating healthcare professionals? >> STEVEN: I love what Laurel had to say a little bit earlier, touched on kind of the heart of my concern as a person with a disability. I don't know how many times I've gone to the doctor and I've heard other people talk about going to the doctors and have them say something like -- the doctor didn't pay attention to me, he was in such a big hurry, the P. T. had all of her education or his education and didn't listen to what I had to say. And I think that's so important that professionals listen. If I've been injured 30 years, I may not have a formal education, but I know a whole lot about my body, and when folks don't listen to you in any piece of your life, when you're ignored by somebody, you don't feel -- I mean, how do you feel when somebody ignores what you're trying to tell them? You feel badly, and you go somewhere else if you can, and that's then results in a lot of situations that I'm aware of, people just don't go back to doctors. And if they stay with a doctor because they're intimidated for some reason, they're not going to get the kind of treatment, and that's not good dock for the doctor or the patient. It's a two-way street. Communication works if it goes both ways. And the other thing that occurred to me at some point, we're talking about how rehab gets so much word these days and if you've got 60 days for a quad or 30 days for a para or whatever it is these days, but everybody can get on the team to help is a plus and if you've got a peer system in place, then that's just another strong piece of the team. I think it's just real, real important. >> THILO: Yeah, that is very important information that reiterates basically also a bunch of research findings as Laurel has pointed out earlier that have repeatedly shown that there is -- both from practice limitation in terms of -- that are imposed by the health care reimbursement system, but then there are a number of communication issues that seem to be very common in the general practitioner practice, but also in exploring some of the educational programs of physical therapy students and medical students. There seems to be a high emphasis on what we call the medical model on learning about the functionality on the medical side of spinal cord injury, but there seems to be very little emphasis on how -- what is actually the experience of spinal cord injury. How do people with spinal cord injury actually function in their day to day life in their different living environments in context and what elements and strategies do they develop basically to prevent secondary conditions on their own? And in my weekly meetings here with peer mentors also I learn every week new strategies and new ideas how to prevent the secondary conditions like pressure ulcers and urinary tract infections can be kept in check or delayed. And there is a wealth of knowledge which some professionals call tacit knowledge which remains unexplored. And I think that is an untapped resource and we need to get to it and this is a way of building this into kind of a formal program. And in switching to today's presentation, and you find on the website that announces the webcast a PowerPoint presentation, and I will loosely go through this presentation and walk you through it, and explain how this program -- how this thinking has come about and how we wish to develop it with your input. We have, for one thing, and we get a lot of negative comments about this ugly acronym, which is the CPPP it stands for a Consumer Professional Partner Program. The history of that is that it's based on another consumer driven education program for healthcare professionals. The basis is almost too strong of a word because it's more loosely anchored or loosely focused on it. The original program that started this debate was called the patient partner program. And that was the program that was developed for people with arthritis and with sponsorship from the pharmaceutical industry, and it worked with consumers in training healthcare professionals, predominantly physicians, about joint examinations. So basically the people with arthritis or consumers with arthritis took over the education of healthcare professionals in medical schools and taught them basically, using their own examples, their own body as an example, to what could be done and how joints look like and feel like and how they should be examined. That was the rough starting out point. The Consumer Professional Partner Program as we planned it is critically different though from this initial idea that started it, that sparked it. First of all, we would like to focus a lot more on the social aspects or the independent living issues, the disability knowledge and social topics as well as the medical side. So we like to combine what is known as the social model, social side of disability with what needs to be known, what needs to be taught about the basis of secondary conditions and people with spinal cord injury. And we will combine the life experience of spinal cord injury and the consumer needs with the knowledge gaps existing in current student curricula of healthcare professionals and of medical disciplines and health care disciplines. So we also wish -- that's the third point, we wish to create a flexible, adaptable curriculum with your help, with consumer input, that can be used in many different ways and that will be made available for everyone to use and to modify. And one vehicle will be what we call the virtual resource network on prevention and our RRTC partner ILRU will host this kind of library or network which will have a lot of these resources including this consumer professional partnership program and its training resources. Now I want to go through the slides and on slide 2 we are stating a little bit of our training aims. The training aim is to develop the CPPP program in which what we call SCI life consultants or spinal cord injury educators will serve as trainers and educators of students and various health professions. Especially we started out with physicians and medical students and physical therapy students. We already heard from a number of people who said why did you leave out nurses? Why did you leave out occupational therapists? This was not done deliberately. This was just to keep it small initially and let it grow and spiral out as we go along, and it was based on basically some agreements we had and some connections we had with medical schools and physical therapy college schools here in the Washington D. C. area. So that was the starting out point. We wish to implement the program first on the pilot test base here at our very own hospital, the national rehabilitation hospital and the program of physical medicine and rehabilitation and we'll seek some input and feedback from the physicians that go through that program and hopefully that in addition to the consumer feedback will help shape this program. And then the third training aim is to implement the program eventually with 1,000 future or current health professionals in those domains, the physical therapy and medicine in the Washington metropolitan area and eventually go beyond this area. I'll talk a little bit more about that. The training method is really to work closely with the SCI life consultants as we call them, and the first life consultant will start in a few days or weeks here at our team and will be on site 50 percent of the time, and then next year as the demands will grow in the second year funding of our RRTC, we will bring on more SCI educators as this program progresses and we will train those educators or SCI life consultants who will then also go into these local area colleges and provide training. The training program content will be posted on our RRTC website and our current temporary website is hosted by ILRU and there you can see again how closely involved also the consumer side in this RRTC. It is the -- the U. R. L. is www.ilru.org/sci and there you find information about the RRTC currently and you'll also be able to find information on this training program. The educational topics we had thought about initially include barriers for people with SCI to obtaining health care services, common complications and consequences of delayed or inappropriate prevention of secondary conditions. The benefits of exercise of physical activities that meet the needs of people with SCI and very basically disability knowledge and patient provider communication skills. And again, work briefly through the different phases of this program. And the first phase like I said we're very much in the beginning. We're developing this program and we're moving into this pilot testing phase in November where we will start a first teaching element here at the National Rehab Hospital, and we'll invite feedback from the physical medicine and rehabilitation program residents. Then we'll move on into probably a residency program in the area because there is very good access through our principal investigator, Suzanne grow, who has connections to several these residency programs in the Washington D. C. area, and we will also then go into our therapy programs -- physical therapy school programs and medical school programs that we have already talked to in preparing the application. Then we see in Phase III there will be a curriculum expansion and we see in many different ways, we can expand to other medical disciplines like health science disciplines. We can move into other colleges and other sites, basically, and we can include additional topics that haven't been covered previously. And we really see this as a very flexible curriculum we're develop willing which will consist of different modules that can be used in very different ways and so on. And the final phase will actually be that we move a lot of the content that will be used, the training content, the training materials, the training consents, the training the trainer guide on to the Internet and the virtual resource networks on exercise and prevention will host this component which we will call the virtual consumer professional partnership program. It will contain some brief video vignettes of teaching sessions where we videotape training materials, PowerPoint slides, possibly a white board, question and answer chat infrastructure and hopefully some life sessions eventually if this is desired. We're both educators, but also consumers with SCI can get in touch with our SCI life consultants or SCI educators at designated times to inquire about certain topics. Now that we're in the phase of developing and compiling our training manual, and the training manual will be available in many different formats. For internal use here, we'll compile a binder that concerns -- that will also contain an S. C. D. with video material, text material and it will contain information in different topical module areas and we'll talk about that in a little while. And it will also be a manual that could be used for home study and for review with clinical project staff. So the training manual in its initial step will be used to train the SCI life educator and with that knowledge, but also with those resources and that information of the additional material that is attached to this training manual, this SCI life consultant or SCI educator will go into the field and will go into the colleges, will go into the PMR residency program and so on and so forth and will teach it. And we're seeking, again, we're seeking your input in devising also this training manual, this training concept and shaping basically the consent and format and format suggestions for our training manual. A brief module outline is every module, as we call it, will contain a title, some learning goals or teaching goals, the core contents, key points to remember, some teaching keys the SCI educator can use in the session, these teaching keys consist of a sequence of how to present information in various settings, what questions to ask, what scenarios to bring up, what examples to provide, and the module will also -- each module will also contain questions for self-study and review. It will contain a teaching exercise, a very practical example of what can be taught and how it can be taught, a little story that can be told, and it will -- mostly at the end also contain a number of resources that can be found both in printed form and multimedia form as well as an online resources. So the resource section -- and we're still currently debating whether that should be done at the end of each module chapter or as a separate resource guide to which we can refer. Each module identifies key problems, key goals, some problem-solving strategies, evaluation strategies to assess the educational outcome, and maintenance strategies, how to ensure that the knowledge -- the information content that is provided during a teaching session and the awareness -- hopefully, eventually the behavior change of a future provider can be maintained over time. So it will contain really this kind of problem-solving approach, not only providing knowledge but really going a step further and providing the knowledge in a way that will be easy if the willingness is there, the motivation is there on the provider's side and to really change the behavior to incorporate this knowledge into the body of knowledge this provider has about physical disability, about spinal cord injury. So it will be a very pragmatic approach. Now, the content of the modules -- we see perhaps four modules compiled or in the process of compiling them. The first module we call disability knowledge and skills and we're going to talk about in this module about living with a disability. We'll introduce a social model of disability, or what we call looking beyond the body. We also will talk a little bit about the general barriers for people with disabilities in society, and then we will talk a little more specifically about the challenges and barriers people face in the provider office and Laurel already indicated some of them in her introduction. And we will Taylor this to the different settings we're confronted with, the hospital setting, whether we're talking to further education professionals, specialty physicians like PMR physicians, physical medicine rehabilitation physicians, whether we talk to physical therapists, nurses and so on. And then finally, what Steve has mentioned earlier in the communication issues that he brought up about listening, learning listening skills, how to communicate with people who have difficulties with speech, allowing time, scheduling, planning for these visits, some very practical ideas. You know, how to proactively think about a visit of a person with a spinal cord injury in the provider office. The module 2, spinal cord injury and prevention of secondary conditions or complications will focus on a brief review of what spinal cord injury actually is and what are the critical rehabilitation issues and then we will move on to focus mainly on the common medical complications and secondary conditions after SCI. What are they, how can they be treated, what are the experiences of people with spinal cord injury with them. What strategies have they developed and how can these strategies that health care providers learn -- how can they work out in the natural environment, different living environments. So we'll talk about that. And then we will also highlight -- and Steve has also referred to that -- the importance of peer to peer strategies in the area of prevention. Where currently one of the other projects we're working on together is a peer metric program focus on the prevention of secondary conditions of a newly acquired condition. We will take some of the experiences we learn in that program, and some of the experiences Steve has talked about and we'll incorporate that into this teaching and training module. And then again we'll use a lot of checklists to make it easier for providers or students to remember these critical keys and key elements of the module. Module 3 will look at the benefits of an active lifestyle and exercise, what to do, not to do, the development of critical exercise plans and that could be passed on as resources. Most of all, resources that providers can use to pass on to consumers with SCI as they see them. Where to find information about physical exercise and activity for different situations. And we also will include some peer models or peer to peer demonstration of exercises, most likely in the form of videos but also in descriptive form. And then the final module, module 4, currently -- and remember as a first step for the SCI educator or SCI life consultant will include some presentation skills, some core elements on successful presenting and one issue that is always very critical is how to make it believable presentation for health care providers and students and how to make it a very competent and very confident presentation so that they -- they are willing to listen, willing to learn, willing to absorb the information. And then we'll include some examples for these presentation skills. We will include information that providers can use to follow up on information that was presented during a teaching session. We'll include some techniques and strategies to include question and answer elements, practical demonstrations, for example, pressure releases on site, or communication training and role plays and so on, and how to use audiovisual materials and equipment. Now, we've included two slides or three slides on some content that we include as part of resources or checklists and audiovisual content, and those are examples that we're thinking of. If you have any suggestions or ideas in addition to these checklists for audiovisual content, please let us know. Just to briefly run through it, we wish to include like a brief checklist, what is the social model of disability? What is living with a disability as compared to treating people with disability? We like to see a checklist on barriers and strategies to improve access and communication and a checklist on prevention. A checklist on exercise, and probably instead of just having one checklist, we'll have multiple checklists depending on the need, for instance, you see here checklist on exercise. Probably one looking for customized exercise for people with paraplegia and another one separately for people with quadriplegia and the same for prevention, probably prevention of secondary conditions. The videotapes that will most likely include or refer to is one on peer mentoring, the benefits of peer mentoring, and peer to peer interventions and peer mediated knowledge and skills. A video that brought to our attention by Steve, silent storms. If you want to say a few things about the silent storm video? (no audio) Hello, Steve? >> STEVEN: Yeah, I'm here. Sorry about that. I had muted and now I couldn't get the button on. Silent storm is a film -- and I've just drawn a blank -- the national organization that put it together. The Executive Director of the national association of alcohol -- on alcohol, drugs and disability is one of the guys that really was instrumental in putting the piece together, but he got funding from another organization and that will come to me in minute. It's essentially talks about cross disability, not just spinal cord injury. It deals with substance abuse and treatment for substance abuse, the lack of it, how folks interact with people with substance abuse and the importance and the lack of treatment and why that's caused in many cases by the stigma of not only having an addiction, but having substance abuse with the addition. Lots of folks in disability specific organizations, for instance, are cautious about getting involved and the lack of treatment for folks with disabilities because of the whole stigma thing. People just sort of think automatically well I've got a disability, that's enough of a problem. I don't want to -- and then folks that have their own priorities, which is natural enough. It's a great tape. It runs about 15 minutes I think, and if you leave a note for me with Thilo Kroll, you probably have his Email address, I can get a copy of it for you. >> THILO: It's a topic that's not talked about much and it's very important really to have that as an option to include that. >> STEVEN: It's a big piece. Exercise is difficult enough for folks whether or not you've got a disability, but if you layer on substance abuse, of course that's going to contribute a whole lot to not doing is the exercise that you need to be doing to prevent secondary conditions and cause some of its own secondary conditions. >> THILO: Okay, thanks. Then we are talking -- instead of not only to have full blown videos, but we are seeking to include some narrated little vignettes that are probably like 30 seconds to one minute long sequences that really show to healthcare professionals and future healthcare professionals on certain prevention techniques such as pressure releases, such as transfer techniques, and so if you have any thoughts on that, what we could incorporate here for these video vignettes, that would be very helpful. We have some ideas of what to do, but any comment or ideas is welcome. And the same goes for exercises. And again, the way we're filming this is we would like to have the peer to peer component very strongly represented there and we started with our peer mentoring video that is really completely in the hands of our peer mentors currently, and we're just providing some help with editing and some help with putting it's eventually on a D. V. D. or on to the Internet, but we just handed them the camera and basically asked them to capture what they thought was important, what they thought was the most indicative of peer mentoring and we'll see some of these -- hopefully this input -- this immediate input reflected in the exercise prevention video. So some additional potential video content is following closely with the chapters that we had talked about, living with a disability, and again, if you have any ideas what to film, what segment sequences to film, that would be very helpful or if you have other resources you can point us to, like Steve mentioned the silent storm video and there are probably a bunch of other video resources out there that can be drawn or incorporated into this training. Because one thing we would like to do is using the information that is out there and not necessarily reinventing everything. I'll go quickly through this list, video content could include film footage on challenges of physical barriers in medical settings, strategies to overcome barriers in medical settings, some SCI quick facts which could be narrated slides for PowerPoint which can be turned into a short movie, common medical complications, prevention strategies, peer model demonstrations, and the benefits of active living and exercise, again, modeled by peers. And ultimately the idea is once we go out into the field to present these programs to healthcare professionals, to students, we will ask them to complete an evaluation form on site which will provide feedback to us on their perceived usefulness, relevance and quality of the information so that as we go along we can modify the program. And questions will also be asked regarding the appropriateness and convenience of the delivery format and style we've chosen, and the same goes, of course, eventually for our virtual component of this training program where we will look at accessibility, usefulness, appropriateness, content relevance and we'll have a section for improvements and again just to reiterate, as we go along, we can modify it or change it and with your input. Now, to conclude just a brief overview, the abstract on the webcast website right now lists a number of questions and so we invite you now, if you have any comments or questions, even if they go beyond the questions we have listed, please feel free to write to us, to write to ILRU and write to Steve. And we'd love to hear from you and the ultimate goal is really to make this program successful and to share the program's success that we use it as widely as possible. With that, I just think -- Steve, do you have anything to add? >> STEVEN: No, I think you've done a wonderful job. I just encourage folks to write in with their questions. We've got a wonderful team here, but there is the slight possibility that we've overlooked one tiny little thing. I'm kidding. You know, we'd love to have your input and hope to hear from you. >> THILO: with that, Laurel, I pass it back to you and see if there are any questions or is it Marj? >> LAUREL: Yes, Marj Gordon is fielding the questions today if we have any that have come in. >> MARJ: Yes, thank you, Laurel. We do not have any questions at this time. >> THILO: Okay. >> LAUREL:Thilo, we had received one set of comments regarding these questions, you know, you had asked for recommendations for things to cover, and I didn't know if you wanted to cover that now. >> THILO: Yeah, that would be good. Should we -- yeah, maybe we can go quickly. Laurel, so that I can catch my breath a little bit, do you want to just maybe see what that was? >> LAUREL: I'll tell you what, I'll read the question and then some of the comments that -- or recommendations that were made. And then you can edit me as we go. The first question you had put down was what should healthcare professionals learn from consumers about living with a spinal cord injury and disability? And we got some good comments on this. One was just they need to know what SCI is, the implications across different health care issues such as impaired lung capacity, dysreflexia, osteoporosis and how these things affect the medical care and sort of a primer on one of the areas of vulnerability regarding having a spinal cord injury. >> STEVEN: That really is so basic, Laurel, if I could interrupt for just a second. We had a guy contact the network not too long ago who had gone to see just a regular urologist over a UTI, urinary tract infection and had been hospitalized with I. V. antibiotics, and he had difficulty using a catheter when he got into a disreflexia. What the staff wanted to do was put in the catheter. The problem was that he was -- the dysreflexia was caused by the catheter that he had in. Finally, just about before it was too late, the doctor, who trusted him, told them to pull the catheter that that was really the problem. He did and the guy was okay. So it just points out the difference even a urologist and people in the urology unit had some difficulty understanding the difference between somebody with SCI and somebody without one. >> LAUREL: You know, I'm sure our colleagues out in the field have a myriad of experiences. We had a colleague who contracted bladder cancer and we later Suzanne Groah who is the principal investigator for this Research and Training Center commented sort of casually in a meeting that bladder cancer was one of the conditions that folks with spinal cord injury especially were -- needed to have checked -- checked rather frequently. And you know, we didn't know this. We have a number of people with spinal cord injury on staff and there are just areas of lack of knowledge that are pretty profound and profoundly affect the quality of life. Your friend with dysreflexia, for instance. Now, there was also a comment that spinal cord injury is so individualized, you know, that there may be stereotypes of what to expect among health care providers, but you know, you really can't make assumptions that they are not only just based on the different levels of spinal cord injury and what that implies, but what are the implications of an incomplete injury or what the implications of -- Steve, you said you were a C. 4-5? >> STEVEN: C. 6. >> LAUREL: As opposed to somebody with a much lower or higher one that these -- these are very important things for the health providers to know. >> THILO: Actually this is a good suggestion also in terms of how we structure this program. You know, I would think it requires more than just including one example, one story line or one -- just one person talking about SCI. >> STEVEN: Absolutely. >> THILO: We need a range of different stories just to see how that not only -- because the physician probably looks at the individual -- looks at SCI and looks at the textbook knowledge and be there or not there, and that's all; but that's the focus in the provider office. What's not seen is where does this individual live? How does this person live? And how does the individual injury level affect the individually over time -- differently over time. So that is also very helpful comment for us to include and sort of build in this manual. >> STEVEN: and that addresses sort of the medical piece of the individual and when you layer on top of that just individual choice, you've got an incredible combination of possibilities for somebody with a spinal cord injury. >> LAUREL: You know, relating to a similar thing, but this individual also -- on question No. 2 which is what do the health care providers need to know about prevention and care of conditions that are related to secondary conditions? And she said, well, gee, just what are secondary conditions? She thinks that's an area of lack of knowledge. Have you found that, Steve? >> STEVEN: Not -- well, I guess personally, yeah, and indirectly I guess I have. Docs get calls all the time from folks who want to talk to somebody or who want a doctor who knows spinal cord injury. That's sort of the phrase that everybody uses and a lot of times that's difficult to find. So if they don't know spinal cord injury, they certainly don't know secondary conditions. >> LAUREL: Thilo, she also points out that she things it's just real important that how preventive care, you know, preventing means to prevent secondary conditions need to be built into the day to day life of a person with spinal cord injury, treatments and protocols, et cetera, and that doctors should probably need to know that kind of information as well. >> THILO: Uh-huh, that's good. And I'm always amazed to see -- it's probably a reflex of like Steve said a lot of physicians don't know anything about spinal cord injury, but then also I see the resourcefulness on the other end that people with SCI become automatically the experts and they develop strategies that healthcare professionals are not aware of. You know, that are not necessarily to be found in textbooks, but they make sense, be it strategies that enable them to live more independently and one example is -- one of the peer mentors we're working with, he thought up a device which he uses to insert a little pen which will help him basically to type. He types with it. He writes with the pen. He opens doors with it by hitting an automatic door opener, and that's something that -- the device is something he has developed and he has thought about it and I believe there are a lot of these examples out there and it would be wonderful really to document it. What do people do? >> LAUREL: You know, with this virtual network that we're constructing over a five-year period, there may be an opportunity for us to set up an area where people can, you know, send in their recommendations for certain ways of dealing with stuff over -- really over the 30 or 25 years that I've been at ILRU and working side by side with a number of folks with spinal cord injury, I have gone in and out -- I can't tell you how many times people started drinking cranberry juice and would drink it every day and it would go out of phase and now it's back in phase. It's sort of like eating eggs. You don't know whether you can or you can't so you've just got to take your chances. >> THILO: Another vehicle might be also we have the first (Inaudible) session and if the future can have an ask the peer session where there can be kind of a dialogue going on about what people have found or what works. >> LAUREL: That would be great. For the folks who may not be aware of it, we've just instituted a quarterly, Thilo -- >> THILO: Yeah, quarterly, yeah. >> LAUREL: Quarterly opportunity to send in questions on a given topic to Dr. Groah, Suzanne Groah, and she will respond to the questions. This first time our subject area was skin breakdowns. Wonderful questions sent in and I believe they are posted now on our website. I'm not sure, Thilo, what the upcoming topic is going to be, but it's a wonderful opportunity to get immediate input on your one specific area of interest or concern. And as you say, similarly, perhaps we can have -- ask the consumer or ask the person who -- what is it around the block a couple of times? Maybe even a panel would be very welcome. Shall I move to the third question that you have here? >> THILO: Yeah. >> LAUREL: Do we have time? Let's see, oh what should healthcare professionals learn about healthy and active living for people with spinal cord injury? Her response is very good. Healthy and active people with spinal cord injury are just like everyone else, they have different interests and live life like everyone else. They have families, engage in the same activities as everyone else for good or for bad, and I don't think this particularly well known outside of a small cadre of people who are in the movement. >> STEVEN: That would be pretty easy for professionals to get sort of tunnel vision from (Inaudible) and the same sort of problems over and over again, skin, UTI, whatever, and yeah, that's a great observation. They probably should -- a bunch of health people should visit doctors. That doesn't make any sense, does it? >> LAUREL: You only have to see one wheelchair basketball game to know that. >> STEVEN: True. >> THILO: and even thinking about the medical profession I think or medical setting when you -- I think when you have a better grasp or understanding is like the old family doctor who had a better understanding of what each family member did or was going on in the family and who was there available to provide support and help and assistance and what hobbies people had and I think there was much more of that and I think maybe more recently like Steve said, the tunnel vision has become more prevalent and I think to infuse a little bit more of this old context of understanding. Where do people live and how do they live and what interests them also can help to form other questions. Where are maybe some issues that need to be addressed, you know, in terms of preventing secondary conditions and then how can -- how can I assist with as a practitioner assist with identifying resources that might be out there to enhance and promote an active lifestyle. >> LAUREL: That's really good. >> STEVEN: There is sort of a problem and I always kind of wondered about what the answer is. I mean, there is a concentration of spinal cord docks and P. T. expertise generally and whatever your specialty is in rehab centers. There is some diffusion, of course, but when you go to the doctor or the clinic down the street, you're just not apt to find that expertise. Other than educational -- that we're trying to do -- I don't know how you'd speed up that diffusion. >> LAUREL: That's not a minor issue, either, is it? >> STEVEN: No. >> LAUREL: Now with so much managed health care, I believe getting a referral to a specialist is tricky under the best of circumstances, but my goodness, I think getting a referral to a urologist would be -- is critical and time sensitive. >> STEVEN: Absolutely. You're running 103 fever. >> THILO: You need some -- at least some basic understanding and the first line of healthcare professionals that people are likely to see, even the primary care provider, if they have at least rudimentary understanding of spinal cord injury and -- or at least are aware of resources once they see someone with a spinal cord injury in their office, and that is something that hopefully even -- if we could just tap into that knowledge or increase that a little bit, you know, that would be great way of progressing, and by going into colleges and maybe addressing these issues early on when students still learn a lot and they may remember this one session, even if it's just two hours, in the entire curriculum, but they may remember the person with the spinal cord injury in that session. >> LAUREL: That's right. >> THILO: And they think back to it and they have a little resource guide in their hands and they might go back to that. >> LAUREL: I think that's -- you know, I can see, too, after this course has -- you see, it's being developed now. It's implementation is this upcoming fiscal year? >> THILO: Yeah. >> LAUREL: Rand then I presume some refinement, et cetera s and then I guess continued delivery in a traditional setting plus then the development of either a stand alone self-study online course. Will the manual be for both the consumer educator -- will it also be for the student -- the health care student? >> THILO: We will probably pull out some of the information, some of the content and a little bit reshape it and reform at it. Actually, what we're currently planning to do is it has actually spiralled into many different directions already and one issue is that we really try to strengthen the peer involvement at our hospital here, and there is actually also thinking that another educational component might be added with a different population in mind, and that's people with newly acquired spinal cord injury. Because the new -- the content like learning about disability, learning with a disability, preventing secondary conditions, active living and so on, those areas are similar, but the way it's presented probably has to change slightly, but we have this idea that eventually our peers will take over basic nursing driven education at the hospital so that -- >> STEVEN: Which isn't happening a whole lot. >> THILO: Exactly. And it may not happen in the way that is really acceptable to people with spinal cord injury because they don't see good role models. They don't see people they -- >> STEVEN: Just another piece of paper in that stack they've given you. You have somebody come in with a spinal cord injury come in and talk to you and answer questions for you. >> LAUREL: It's hugely encouraging to see somebody independent or capable when you're so vulnerable and newly injured and families, too, I suspect. You know, after we finish redoing the entire medical curriculum for the health care providers, and it will be mostly about 2 percent everything else and 98 percent spinal cord injury issues that, you know, maybe along some time during the cycle of the project we might consider adding on a piece that's developing fact sheets or that consumers can take to their primary care physician, you know, these are typical secondary conditions or here are implications related to quadriplegia, paraplegia, incomplete injury and so forth. Maybe to arm the person with the spinal cord injury somewhat going out into the world. >> THILO: Yeah, that's very good and very helpful. I think we'll work on that and I think just maybe as a note of maybe not caution, but we are realistic enough that we know we can't go over throw a lot of victories that are in existence, but what we would like to do is -- >> STEVEN: Sure we would. >> THILO: Yeah, that would be nice, but to influence them at least to a little extent and we have to be ultimately very flexible in what we can convey maybe in two hours time, and that is something we're going to work out with individual sites. But we tried to develop a broad range of these modules, but you saw -- I mean, we have four modules right now for the training manual, and then we might add another one or two modules, but we like to keep that still focused but at the same time we also may have to be flexible in the way we implement it at each different site. >> LAUREL: Boy, I would think -- Thilo, one question that has arisen is how on earth did the agreement with a medical hospital come about so that you could -- I mean a teaching medical teaching hospital that this time would be allowed for the project to introduce these concepts? I'm astounded that it happened. >> THILO: It happened basically based on personal contacts that individuals who were involved in this RRTC had with different sites, but I think it comes down to some very personal contacts that have at least opened some doors, and we have to see, you know, if we have the letters. We have to see to what extent it will be realized and how it will be realized. It may be every two years that we get a time slot somewhere or we get maybe a guest lecture or we get -- we get it as an add-on or it will be part of a standing curriculum. So we will be very flexible in executing this in different sites. >> LAUREL: Very remarkable. We are formally affiliated with Baylor College of Medicine, and have had opportunities, but nothing as coordinated and structured as this. This is pretty extraordinary. Oh, one last question you asked, a real quick answer was how can we improve the professional behavior of healthcare professionals toward people with spinal cord injury and other disabilities? And she says, boy, teach them basic disability etiquette. Isn't that the truth? How do you talk to folks? Steve, I bet you haven't a word to say about that. >> STEVEN: I don't want to get started; but it's wonderful I mean all the P. C. stuff about people first. Part of that is education. We sensitize people that somebody -- the individual is maybe a little bit different than some able bodied folks that the doctor or the P. T. or the O. T. has been seeing, and I think there is just as much -- and Thilo talked about this a little bit -- it's just as important to educate the consumer that he has the right to be treated as an individual as it is to sensitize the professional that he has an obligation to treat the person as an individual. So and again -- go back to the person's right, if that individual is not being treated correctly, then he or she needs to address that with the professional and move on in some positive direction, whether it be go on with treatment because the individual responds to you or go somewhere else. >> LAUREL: Yeah. Thilo, we've covered a number of the questions that we had responses to. I believe you're still inviting people to look at these questions and to send in some comments -- anything they care. >> THILO: Absolutely. That would be very helpful in the process and hopefully we'll have an update in a year from now where we can talk about this again and report back on what progress we've made and with everybody's help and input and -- or maybe we've run into some difficulties which we will also report and maybe people can help us to resolve those difficulties then. But any comment, any concern, any question -- if there are any healthcare professionals out there or program directors, you know, we would be happy to hear from them as well to involve -- get involved in their curricula and we see this -- I guess an equivalent would be in the software and Internet business as an open source project. So we like to incorporate input, but we also will put everything out there for everyone to use. >> LAUREL: This is the Linux of the education -- I would point out that we will establish for this town hall meeting a discussion forum. If people would like to contact you or Steve directly or us, or if they would like to come to the same web page and there will be a new link, and it will be to the discussion forum and they can go there and just like any discussion forum, enter their comment and others can either respond or just read and see what other folks have to say. >> THILO: Yeah. That's great. That's good to hear. >> LAUREL: and if you like, we can also, Steve, post the information on silent storm there if there is information on what it might cost to obtain or et cetera. >> STEVEN: I'll get that information to you. >> THILO: and also, Steve, I think we can both receive comments. If you would like to contact Steve, you know, if that's okay with you, Steve -- >> STEVEN: That's fine. >> THILO: As we're talking any way. I would like to thank everybody and ILRU in particular and doing this webcast and enabling us to do it and to get our voice out there about this and our topic out there. And we look forward to more. >> LAUREL: Well, thanks to both of you for today's presentation. I just want to repeat that you've asked for input not only on these questions, but you are also soliciting suggestions and recommendations for vignettes I believe. >> THILO: Right. >> LAUREL: For the video, ideas for them or once that ones that exist that you might want to recommend to Thilo and Steve. Also I believe that you all were requesting recommendations from the field of resources that might just be useful in general along these same lines. So please any ideas you have or recommendations would be very helpful. Again, your ideas can be sent directly to Thilo or Steve or us at ILRU or posted on the discussion forum. We'd welcome them very much. In addition, this town hall meeting is going to be archived and what that means is that we'll have the audio streaming plus the realtime captioning will be preserved along with this web page right here. And so that if a person who hasn't heard this or you want to recommend it to somebody else, they can come to this page and click on the link for the audio, there is going to be a transcript of this presentation if you prefer just to read it. The handouts will still be here. We'll have a new link which will be to the discussion forum and note also that there is an evaluation form and both as an archive and today we would request that you complete the evaluation and any comments would be very welcome. In addition, I want to acknowledge the support we have for this project. Again, it's sponsored by the Research and Training Center on spinal cord injury. Thilo, Steve, we got some inquiries after we sent out the first announcement which was what is SCI? And we're very Humble down here and recognize that we've made an assumption that everybody knows what we're talking about all the time. I'm a little bit worried now and repeat that ILRU is -- well, we have eve safe that for another time, but it's spinal cord injury on promoting health and preventing complications through exercise. It's a program underwritten by the national institute for disability and rehabilitation research as far as the department of I had indication, and the special help that we've had today. Two people are off-site and that's Rob Dickehuth who is the technician that takes these telephone lines -- audio and then somehow it's put into this box or something and it's audiostreamed in realtime through your computer to your computers through the Internet. And Marie Bryant is our realtime captioner and those of you who are familiar with captioning, recognize that she's very good and stays up with even the fastest of us talkers. >> STEVEN: Typing her fingers off. >> LAUREL: at ILRU we have a team that is terrific in operating these town hall meetings, and they include Marj Gordon who had we had any questions today would have handled those, Dawn Heinsohn, Sharon Finney, Rachel Kosoy and Mark Richards. So we'll close -- and I just want to point out to my friends in the independent living movement again that these -- this initiative of soliciting even aggressively soliciting consumer input into help us shape research programs is not all that common, and we in the independent living field have often been somewhat dismayed by the lack of sensitivity and interest in consumer involvement. Now, here at NRH the center on health and disability research is well known for its interest in shaping the research so that it would have -- of applicability and would address issues of most concern to those of us with disabilities. So this is very welcome and thank you for that. I think partly, Thilo and Steve, it's partly because researchers are aware of -- well, Participatory Action Research, participatory action research, but also are sensitive to what consumers are saying to them, but in addition, I think it has to be a result of the success of the disability rights movement. >> STEVEN: Amen. >> LAUREL: That more and more people are living independently in the world and more and more people with disabilities are empowered and are willing to take stands and make clear what their wishes are so that we have people who are now working for different agencies in various administrations and we have people who, Steve, are willing to come to different communities and make clear what are the issues of the day. Just the disability rights movement has made extraordinary changes to our whole way of life in the last -- what do you think, Steve -- 20 years, 30 years. >> STEVEN: a solid 20, but longer than that certainly. >> LAUREL: These last few is certainly incredible. >> STEVEN: It's actually beginning to be noticeable. >> LAUREL: and not of course that folks at NRH needed anybody with a padlock and chains to bring them around. They've always been brought around. Thilo, thank you from that. Meanwhile, we'll close out here inviting you again to complete an evaluation. Inviting you to visit the archives. We have a number of other webcasts that may be of interest to you. We'll have another town hall meeting, Thilo, in about two to two three months, will we not? >> THILO: Uh-huh. >> LAUREL: and it may be better than this one if possible. >> THILO: We don't know the topic yet, but we'll post it as soon as we know it. >> LAUREL: So again, thanks for all of you for joining us today, and we'll see you next time and good afternoon.