Report: Forum on International Collaborative Research in Rehabilitation
by Paul Ackerman, Ph.D.
July 23, 2003
(Note: Forum materials, including abstracts and list of participants, may be found at http://cirrie.buffalo.edu/proceedings/CIRRIE2003.html)
BACKGROUND-What is CIRRIE, and Why this Forum?
The Center for International Rehabilitation Research Information and Exchange (CIRRIE) is a project sponsored by the United States Department of Education's National Institute on Disability and Rehabilitation Research (NIDRR). Given a statutory mandate to fund and improve the U.S. rehabilitation field through shared international knowledge and the exchange of foreign experts, NIDRR sought to develop a center to carry forth this directive; CIRRIE, utilizing the resources of the State University of New York at Buffalo is that center. Its mission statement responds to the NIDRR needs: "to facilitate the sharing of information and expertise in rehabilitation research between the U.S. and other countries."
To carry out this mission, CIRRIE has developed productive, working mechanisms that are open and available to any person interested or involved in international rehabilitation and/or disability research . These activities are, briefly:
Developing an international rehabilitation online database searchable in user-friendly ways;
Assisting rehabilitation research Forum organizers in the U.S., funded by the Office of Special Education and Rehabilitation Services (OSERS), to establish an international component within domestic Forums by involving eminent colleagues from other countries;
Facilitating international exchanges of rehabilitation research experts between research centers in other countries and OSERS-funded projects in the U.S. by providing airfare; and
Disseminating information to rehabilitation service providers through monographs, workshops, and international Forums such as the current report describes.
Given that mission and those objectives, CIRRIE queried its constituents and determined that a Forum on international collaboration was needed. Many individuals and institutions in the United States in the field of disability and rehabilitation research understand that international collaboration often presents unique opportunities for advancing their work. Some have developed successful collaborations. Others have been unable to bring their international interests to the point of implementation for a variety of reasons.
A forum was developed to examine different forms of international research collaboration and to identify problems and best practices. The meeting included an array of case studies to enable the participants to identify different forms that collaboration has taken in several fields of rehabilitation research. Funding agencies provided information about the possibilities and limits for funding international research through their programs. Information resources to support international collaboration were presented. The potential of the International Classification of Functioning, Disability and Health (ICF) as an instrument for cross-national comparative research was discussed.
Participants included researchers from many fields with collaborations at various stages of development. It was CIRRIE's hope that this forum would strengthen the understanding of the processes through which successful international research collaborations are initiated and conducted.
FOREWORD-A Guide for the "Lonely Researcher"
Because the Forum proceedings are lengthy, and because the topics discussed are diverse, this foreword was written to give the reader an overview of the Forum and assist the researcher in making the contents relevant. Armed with an Internet connection, the researcher can use the material presented in the Forum, referenced as websites and email addresses, as a starting point for a wider and greater collection of knowledge. For the "lonely researcher" in search of an international partner, (a metaphor used in summarizing the first day's themes), the Forum proceedings offer experiences not only of developing international research partnerships, but of maintaining and nurturing them. All of the speakers discuss the rewards of international partnerships: greater scope of research goals, comparative studies, different cultural and results perspectives, and the personal satisfactions of working with interesting-and interested -colleagues.
The Forum was keynoted by Sharon Hrynkow the Director of the Fogarty International Center, the most visible international research agency of the U.S. Government. Dr. Hrynkow shared with the participants the goals, the priorities, and the specifications for research with the Center. She also talked about the characteristics and components of good research-and good research proposals. There are mantras of successful and unsuccessful research (e.g., "all politics is local") and these she taught to the participants of the Forum.
Case studies of international partnerships followed. Drs. Savic and Charlifue presented a comparative study of matched U.S. and UK spinal cord injury populations. The presentation included descriptions of their training, inter-disciplinary work, and the extensive patient protocols that were as informative to patients as to staff. Now a need is seen for a further phase with the two populations, but funding is difficult, and they are devising alternate plans to salvage good data.
Dr. Levine from Michigan and Dr. Graimann from Austria met at international conferences and immediately envisioned collaboration between their major research interests: direct brain interfaces. Their joint work confirmed the value of the partnership with enhanced research results; these results, however, were not obtained without extensive communication, both electronically and in person. The value of built-in communication channels is illustrated and encouraged.
Three-party international research partnerships were presented by Dr. Vanderheiden from WI, Dr. Harkins from Washington, DC, and Mr. Hellström from Sweden. Working in the field of assistive technology for persons with deafness and international standards for this technology, the three researchers have been able not only to obtain relevant research results, but to propose and validate international standards that have been adopted. Their partnership is dynamic and fluid, a necessity for this work. They discuss the types of funding and cooperation that make their work possible.
A project in Florence, Italy, with the partnership of the U.S. National Institutes of Health is described by Dr. Benvenuti of Italy and Dr. Stanhope of MD. This project was forged in 1989 when Dr. Benvenuti was a visiting scientist at NIH, working with Dr. Stanhope. Through professional and personal affiliation they were able to discuss their research visions and found them compatible. Thus started the successful partnership, built on shared research ideas, and buffered by the overcoming of obstacles of language, culture, communication, IPR problems and restrictions in site visitation.
Dr. Mokhtari from France and Dr. Van der Loos from CA discussed a proposed project between the U.S. and the European Union. This project will develop resources between researchers on both continents in rehabilitation therapy and assistive technology by establishing exchanges, centers of excellence and research communication. The problems of funding through the European Union were discussed.
The problems of striking up a professional relationship are overcome when researchers know the resources available to them for finding research-compatible scientists or which funding agencies might be interested in or flexible enough to receive an application. The next section of the Forum explains these resources.
Marcia Daumen, of CIRRIE presented and explained CIRRIE's resources. CIRRIE offers a large searchable database of non-U.S. research, a Country director of resources available in international countries, international conferences, discussions, publications and travel grants.
Mark Odum presented NARIC, the major U.S. resource for rehabilitation research literature, databases of NIDRR programs, products, grantees, cross-library information research, and a calendar of events. Because NARIC information sometimes includes research and articles with international perspectives and importance, it is a useful complement to the CIRRIE database. Its major focus, however, is comprehensive domestic rehabilitation research reporting.
Dr. Myklebust, of NIDRR, then headed a section of the Forum devoted to exploring funding resources for international research from U.S. governmental research agencies. His first speaker, Dr. Corrigan of Washington, DC., talked about the possibilities in NIDRR for international research partnerships. A few of the grant competitions of NIDRR, particularly field initiated projects, the Switzer awards, and collaborative grants with NIDRR's centers, are available. NIDRR sometimes funds collaborative research, but usually through funding to U.S. grantees with sub-contracts to international partners.
Dr. Bridbord then spoke of grants from the Fogarty International Center (FIC) of the National Institutes of Health (NIH). This comparatively highly-funded program with high visibility is open primarily to grantees who have started with NIH grants and wish to make them international or to apply the results of those grants to international projects and centers. He gave the criteria for acceptability of research applications and the philosophies of management that should govern the project. Long-term projects are possible with FIC.
Dr. Weinrich presented the potentials for funding both of the National Center for Medical Rehabilitation Research/NIH and NIH itself. The necessary characteristics of NIH international awards, the grant mechanisms available through NIH, and the process of peer review were explained.
The U.S. Department of State's Bureau of Educational and Cultural Affairs (ECA) was represented by David Levin. There are many opportunities for exchange visits arranged through funds of ECA, not the least of which are the various Fulbright opportunities. Many of the awards in ECA are unique; advice was given on how to prepare them.
Latin America is an international area that could be fruitful for international partnerships, and is sometimes overlooked because of its lack of visible or English publications. A section of the Forum was devoted to exploring potential partnerships from this part of the Western Hemisphere. The Pan American Health Organization (PAHO) has an extensive website that provides research results, literature, personnel, and funding opportunities for researchers interested in research-partnering with Latin America.
Dr. Salicrup discussed the possibilities of Latin American partnerships through the Fogarty International Center of the NIH and major organizations such as PAHO, the World Health Organization, the World Bank and others. These partnerships create distinct possibilities for co-funding of research and training programs for partners from both North and South America.
Rounding out the Latin American spectrum was a presentation by Drs. Videtta and Carney, co-project directors of a collaborative research project between the Oregon Health and Sciences University and a consortium of hospitals serving traumatic brain injury patients in Argentina. The project has been characterized by solutions to many problems of culture, language, service philosophies and communication. These solutions are excellent learning experiences for new partnerships.
Is the European Union (EU) a viable funding source for U.S. researchers? This question was addressed in a short, ad hoc presentation by Drs. Leonardi and Van der Loos, both experienced in working with EU funding on both sides of the Atlantic.
To bring a wise and experienced perspective to international partnerships, Dr. Nash of the USA presented his definition and perspective on the pleasures and problems of international research partnerships. He offered the Forum participants his personal policies of project and partner selection, foremost of which was "confirm, confirm, confirm."
Dr. Ackerman finished the day with a summary of the development of international partnership, as presented throughout the day. The metaphor of "courtship" and all its behaviors and feelings seemed to best express the process of finding and developing international research partnerships. Dr. Stone followed with the expression that he felt that, perhaps, CIRRIE was a "marriage broker." All partnerships are helped by the resources presented at this Forum.
Day Two examined the newest tool in the repertoire of international research, the International Classification of Functioning, Disability and Health (ICF). Developed by international committees revising the classification systems of the World Health Organization (WHO), the ICF offers a truly new and useful measurement tool, currently translated into many languages, that can effect the comparisons of Ss and populations along many functional parameters.
Dr. Simeonsson discussed his work in the development of a new revision of the ICF which adapts it to the need of children's research. Dr. Leonardi, a pediatric neurologist in Italy, told of that country's large-scale and intensive efforts to get the ICF adopted in all its research and service programs. Both speakers demonstrated the flexibility of the ICF and emphasized its usability.
Dianne Caulfield of Canada then told about the Canadian-U.S. center for the ICF, the North American Collaborating Center (NACC). This center is devoted not only to further development of ICF measures but to training persons in its use and in communicating to researchers everywhere about development, issues, and conferences affecting it. The NACC is a viable resource to researchers seeking to use the ICF.
Dr. Hendershot described the organization called Disability International Standard Tabulations (DISTAB). This organization is dedicated to working with coding systems for comparing international populations. It involves five different countries, Canada, France, The Netherlands, South Africa and the United States. Current efforts are the back-coding of existing studies to determine reliability, and the communication of results to all constituents. Dr. Hendershot's presentation included examples of coding solutions, and perceptual graphics of the ICF and its predecessor measures.
Finally, a case study of research in progress between the U.S. and Brazil was presented by Dr. McInerny of the American Institutes of Research and Dr.Buchalla of the Brazilian WHO Collaborating Center. The project is planned to measure differences in services to cognitively-impaired subjects with staff training and exchange as the intervention. Measures will be in ICF and other ordinal measures, but difficulties exist in procuring a standardized Portuguese ICF-a task that this project may also have to consider.
David Keer of NIDRR summarized the ICF section of the Forum. He emphasized how important the ICF is as seen by U.S. government research agencies and talked about efforts now in process to procure a wider encouragement of Federal grantees to use the ICF or to back-code projects with its measures. Dr. Ackerman summarized Day Two of the Forum as a challenge for all researchers, but focused on the rewards of using the ICF. Not only would it open up more research capacity, but it promises to make research applications that use it more appealing to funding agencies.
Dr. Stone closed the Forum with appropriate thanks, remarks on the processes and content of the Forum, and the announcement that the proceedings would become a part of CIRRIE resources all over the world.
DAY ONE (July 23, 2003)
Welcome and overview
Dr. John Stone, Director of CIRRIE, opened the meeting. He described the purpose of the Forum, to examine what works and doesn't work in forming and maintaining international research partnerships. He explained that the Forum is designed to provide great variability in the presentations.
The International Classification of Function and Disability (ICF) is a tool designed to provide a framework for comparative research. That is why it is featured on the second day of the Forum.
Particular thanks for the Forum go to the staff of CIRRIE, its sponsor, NIDDR, and to all the co-sponsors, especially the Fogarty Center.
Sharon Hrynkow, Ph.D., Deputy Director of the Fogarty International Center for Advanced Study in Health Sciences, National Institutes of Health (NIH), Bethesda, Maryland introduced the mission of NIH: to uncover knowledge that will lead to better health for everyone. Through its twenty-seven Institutes and Centers the NIH fulfils its mission by: conducting research, supporting research, helping in the training of researchers, and fostering communication of medical and health sciences information.
Her agency, the Fogarty Center, has an even more specific mission: to reduce disparities in global health through support of research and training programs. Through the Center's extramural programs, its intramural labs, and its training programs for the next generation of researchers, the Center seeks to form and promote international research collaborations as the key to developing and advancing knowledge of global health. The Fogarty Center started as an agency making fellowships for the foreign exchange of scientists; today visiting scholars are augmented by directors of foreign research awards, foreign components of domestic awards (the most popular of the programs), and training grants. The Center also effects liaison with the U.S. Department of State so that the U.S. foreign agenda in health is compatible with or complements U.S. Foreign Policy.
From the work that the Center has completed, it has learned some valuable lessons about international partnerships. It has found that successful features of international partnerships include:
Public health needs. Projects which address public health needs are rarely straightforward. It is difficult to tell which projects meet the needs of larger populations vs. those projects which satisfy the curiosity of research questions whose impact is thereby limited.
Scientific quality of the research is sometimes difficult to guarantee when a whole population is the target audience and multiple researchers are involved, but excellence is absolutely necessary for effectiveness. The NIH grant and review process guards this excellence.
The potential for impact of research activities is extremely important in international research. Goals are not mere dissemination goals, but actual saved or changed lives.
Sustaining over time the changes wrought by research is a necessary part of a research proposal in the international arena.
Adequately supporting the infrastructure of research, including Human Capital, is as necessary as conducting the initial research. Otherwise, how would the impact be measured, the scientific quality maintained, the effects prolonged, and the target population reached?
Research planning must also take into consideration changing landscapes-economic, political, social, and even moral. If all these changes cannot be anticipated from the first, a research proposal has to have flexibility enough to sustain changes as they occur.
Adequate funding for all the projects and phases of the research has to be planned and met.
These characteristics are what the Fogarty Center looks for in international research collaborations, and, if present, almost assure a successful project. But what are program characteristics that can be used by researchers to obtain their goals? The Fogarty Center recognizes nine program strategies that have proven themselves over time to assure the success of international research.
The programs have stable personnel, housing, and administration and have long term commitments;
The programs contain long-term mentoring;
There is mutual reinforcement for research-by all countries, all funding sources, and all researchers and practitioners;
Increasing emphasis of work at a foreign site shows a commitment to the program;
Advanced training courses at a foreign site increases the infrastructure and builds capacity;
The research personnel must be respectful-and knowledgeable of local customs;
There is support at re-entry of researchers back to non-project positions;
The research program engages in extensive networking; and
The administration of the program is flexible
One of the major problems in all international research is the political problem. (also known as the "changing landscape" problem). All politics is local. Decisions that have to be made early on in any international collaboration are: 1) how to shore up collaborations in the face of changing political backdrop; 2) how to select an international partner; 3) should you have a formal agreement, and is there value added to this; and 4), what security measures (i.e., grants, travel, shipment of samples, etc) will support or interfere with your project?
International collaborations have changed dramatically in the last few years. The many elements of any successful venture are being recognized and planned for. Future international cooperative efforts may be more problem driven than project driven; involve more clinical services; incorporate the administration of the grants with more emphasis; be more reliant on information technology; look for "glue" that bonds together successful partnerships.
The best advice for international research planning is a quote from one of the most successful hockey players in the world, Wayne Gretzky: "I don't skate to where the puck is, I skate to where the puck is going to be."
Questions were encouraged.
Q Dr. Hrynkow, is a foreign
collaboration component always a part of a grant application to the
Fogarty Center or are there times when it could be added
A The foreign component is always a part of a Fogarty Center grant application.
Q It is known that a meeting on head trauma was
occurring concurrent with this meeting. How did that fit into the
Center's priority setting on international collaboration?
A Many of the priorities of the Fogarty Center are set by use of meetings of experts, which described the current meeting. After this meeting and the input from outside sources, a blue ribbon panel from the Center will decide on a research priority and write an RFP for one in the area of head trauma, trying to establish the public health question. That is an example of how research priorities are set for this Center.
Q Are there any successful research
intermediaries, i.e. any organizations that helped to
communicate between researchers and industry or between researchers
A The Fogarty Center had established some, e.g., a mental health center in China, AIDs centers and TB centers in foreign countries, to assist in information flow. In all cases these centers were multi-governmental.
CASE STUDIES: SUCCESSFUL INTERNATIONAL COLLABORATION IN REHABILITATION RESEARCH
Moderator: John H. Stone, Ph.D., Director, CIRRIE
Dr. Stone reiterated that the purpose of the case studies was to demonstrate various types of international research collaboration and to provide a forum whereby participants could assess practices that could either help or hinder their own international collaboration efforts. Therefore the case studies provided no universal "do's or do not's", but rather personal experiences and reflections about what assisted each of their own projects-or provided obstacles.
Dr. Stone introduced the first case study, An International Investigation of Ageing with Spinal Cord Injury. The two speakers for this Case Study were:
Gordana Savic, M.D., a Research Scientist at the National Spine Injuries Center, Stoke Mandeville Hospital, Aylesbury, United Kindom; and
Susan Charlifue, Ph.D. (Cand), M.A., a Research Supervisor at the Research Department, Craig Hospital, Englewood, Colorado.
Since 1990, Craig Hospital has led an international investigation of ageing with spinal cord injury (SCI), collaborating with two leading centers of SCI care in Great Britain. Garnering resources on both sides of the Atlantic, five separate episodes of data collection have been conducted in 1990, 1993, 1996, 1999, and 2002. In the latter two phases, the investigators were joined by collaborators in Canada. Specific areas of interest have focused on changes over time with regard to health, functional, and psychosocial status. In addition, due to the longitudinal nature of the study, risk models have been developed to identify predictors of various health conditions.
The project started through the collaboration of physicians from Craig and the U.K. meeting at international professional meetings and sharing/advocating common philosophies of spinal cord treatment and rehabilitation. Because of their common interests, the physicians became acquainted with each other's centers and population characteristics, and thus were in no way hesitant to share and exchange professional personnel and ideas. Exchanges were arranged for physical therapists and occupational therapists from both sides to visit the other, and exchange training by physicians of junior medical staff was instituted. This provided international perspectives on practices and procedures.
Craig Hospital was attached to the Model Spinal Cord Injury Program of NIDRR and thus became focused on research in several areas of spinal cord treatment and rehabilitation that it determined could be assisted by international research. These areas were: survival with spinal cord injury, the increasing incidence of secondary conditions, increasing lifetime costs, and increased general interest in disability and ageing.
Through its NIDRR grant, Craig carried out a feasibility study of the international project in 1988, and in these explorations identified funding resources, obtained required approvals by IRB/Ethics Boards, identified staffing needs for the study, worked with hiring policies to procure staff, identified and provided accommodation and transportation needs, and determined the first steps to project initiation. After careful consideration and resource allocation, the "Longitudinal Study of Ageing with SCI" was set in motion.
In 1990 the First Phase was initiated. The sample population was identified and contacted. All participants were invited to come to the respective clinics for testing and interviews and the use of the data was explained. All records since the onset of SCI were examined and coded as data. The Ss were given laboratory and radiographic studies, full physical examinations, range of motion testing, ECGs, respiratory studies, and in-depth medical histories and psychosocial interviews. The follow-up reports on each S described the findings of the records/patient review.
Phase II and III were conducted in 1993 and 1996 respectively. They were essentially repeats of the data gathered in Phase I, but the data were analyzed to show statistical consistency and validity. In these two phases, the staff also took photographs of participants, made home visits when warranted, and executed full reviews of interim hospital and GP records. At the end of Phase III, information letters were sent to all participants describing the general findings, professional reports described the findings and postulated risk models, and a flurry of writing increased the literature in peer reviewed journals and consumer brochures. The data also suggested compelling areas for further investigation.
Phase IV in 1999 added a Canadian Cohort who also had like treatment/rehabilitation philosophies, could benefit from the research design and previously gathered data, and could fund the continuation of the project. However, lack of sufficient money from the Canadian source hindered full physical workups of Ss, but maintained medical histories, psychosocial interviews and medical record reviews.
Phase V, starting in 2002, saw even more limited resources but interest in additional topics for study. Major modifications to questionnaires were derived, focusing more on psychosocial issues and the functional impact of problems. More telephone interviews were conducted, yet the data seems valid.
Currently, data analysis for the whole project is being executed. Letters to the participants will describe to them the latest findings. The main questions of the project, however, are unanswered: Will there be funding to continue? If continued, what areas of research focus need to be modified or stressed? The strongest question, however is: Have we made an impact on the care of people ageing with SCI?
All the agencies wish the project to continue. To do that requires some challenges (some call them obstacles). Identifying funding sources is a large problem in today's restricted research pool. If financial resources do become available, then creative budgeting must occur that takes into account patient compensation, newer and more expensive diagnostic studies, and study staff and administrative/intramural support. Major professional staff must have release time for the study, which may have employment or honorarium costs. Finally, the IRB/Ethics issues are sometimes major hurdles in an international project. All funding sou rces want ethics clearance, often by Boards relevant to their countries and not the collaborating countries.
The staff of the investigation believes that there is a recipe for professional success in collaborations; the following seem to have been active procedures assisting their project:
Put the participant first; make sure his/her needs for information and physical accommodation are met;
Work as a consistent team; be familiar with the entire staff, all procedures, etc;
Consistently report study finding back to participants;
Consider the interim period between phases as a pre-planning period; look at the whole project in pre-planning; and
Institute regular and on-going communication.
Questions were held until after the next presentation.
Dr. Stone then introduced the second case study, An International Research Partnership for Development of a Direct Brain Interface. The two speakers for this Case Study were:
Simon P. Levine, Ph.D.,Professor, Departments of Physical Medicine and Rehabilitation and Biomedical Engineering, University of Michigan, Ann Arbor, Michigan, USA, and
Bernhard Graimann, Ph.D., Assistant Research Scientist, Department of Medical Informatics, University of Technology, Graz, Austria.
An international collaboration between the University of Michigan Direct Brain Interface research group, the Graz Technical University Brain Computer Interface research group, and the Henry Ford Hospital of Detroit, Michigan has been formed. Working on the problems of capturing and interpreting brain commands from persons with little or no ability to move, the research parties have been successful in increasing the measurability of brain signals and in establishing working paradigms of brain functioning and in stimulating further research and application through extensive professional writing.
What is direct brain interface? Direct brain interface is an assistive technology which directly accepts commands from the brain, analyses the recorded brain signals, recognizes special brain patterns in the signal and translates these patterns into control commands for assistive devices. There are two perspectives in studying brain patterns. One perspective studies and measures the oscillations of brain signals, usually with electroencephalographs (EEGs) (University of Technology, Graz). The other perspective studies event-related potentials, using the electrocortogram (ECoG) and open head electrode implants (University of Michigan). Other differences are the study of synchronous (TU Graz) vs. asynchronous (U of MI) signals. Each perspective breeds its own research culture and specialized data, but the possibility of comparing and complementing each research effort is obvious and necessary in the development of direct brain interface assistive technology.
Through joint attendance at international meetings, and finally through personal contact (and a strategic science exchange funded by CIRRIE), the three agencies decided to work together. As they got to know each other, they found that they had similar goals and standards. They had two major short term goals: 1) to develop an assistive technology sophisticated enough to work a single-switch control, and 2) to potentially help a limited population of motorically-impaired persons, demonstrating that direct brain interface was, indeed, possible. The long-term goals of the agencies were to: 1) develop a direct interface capable of controlling multiple independent channels, and 2) make the results of research available to all engineers, physicians, and rehabilitation specialists working with assistive technology.
The concept of the working partnership was complex and could only be solved by productive dialogue. At first, the agencies only wanted to share data to reinforce their research, but concurrent with the sharing was the realization that each agency had to help the other understand the data, particularly during analysis. There were concerns about methodological differences, the interpretation of results and the methods used to access the data. Only when Christoph Guger of Graz visited the University of MI for one week (the CIRRIE travel grant) were the differences recognized and resolved. It was necessary to have face-to-face interactions between researchers, have the research presented formally, demonstrate signal processing methods, observe data transfer and explanations, and compare joint examination of results, before a working relationship--the partnership--could be formulated. With this understanding, methodological challenges could be resolved, appropriate research goals outlined, and working personnel identified. As a further benefit, both agencies worked cooperatively on research funding proposals, were joined by the Henry Ford Hospital, and received funds from NIDRR, and the U.S. National Institutes of Health.
Early on in the partnership the value of face-to-face meetings was determined. Thus, there were early (yet brief) exchanges from the project PIs, the visit of two senior researchers from Graz to MI for one month, a workshop in Graz, a presentation of results by a Graz researcher to the MI group, and occasional interactions at Forums. Both researchers talk of a pivotal meeting in Graz, where some of the most important partnership planning took place on a hillside trek between the principals.
The partnership was solidified and enhanced by regular communication, through email, a worktools website , a weekly online chat, and joint publications prepared with collegial writing software. (The website for the Direct Brain Interface project at the University of Michigan is http://www.engin.umich.edu/dbi/. The worksite tools section of this website include email archives, data collection resources, datasets, electrode location information, instructions and documentation, online meetings transcripts, papers and presentations, peak search information, results, and contact information. Access to the worksite tools are, however, restricted for obvious reasons of S privacy and scientific rigor. The website does, however, offer a detailed description of the project.)
After a two-year collaboration, the results of the joint projects exceeded the expectations of all agencies. The results from Graz influenced the direction of research at MI; the combined methods of MI and Graz were used to detect template-based and spectral-based pattern analysis. MI kept its theoretical approach to signal detection, but incorporated spectral change features. It is felt that the new methodology of the combined results will provide improved detection accuracy, reduced interface response time and improved feedback. At least ten single and joint publications have been generated from the project and published in or submitted to juried publications.
Thus international partnership not only produced a quality research program, but changed the direction and the results of the collaborators and future researchers. The personal collaborations and visits by the staff were considered major facilitators of the project.
Questions and Answers were accepted by the presenters of both case studies. The questions were for the Craig-Stokes Mandeville case study:
Q Is Stokes Mandeville [Hospital in the
U.K.] ahead of the U.S. spinal cord
injury system, and, if so, was that a problem in the research
A Stokes Mandeville is neither ahead of nor behind the American SCI system. However, we encountered different vocabularies and some cultural/technological differences. Contact helped us resolve those differences.
Q Why was the Physical Therapy and Occupational
Therapy so important between CO and the
UK? Did it continue throughout the project?
A The Physical Therapists and Occupational Therapists did much of the data gathering and therefore had to use the same measures and the same vocabulary. Because of lack of money, there was only one chance for the exchange. The effect however was lasting throughout the project's length of time.
CASE STUDIES: SUCCESSFUL INTERNATIONAL COLLABORATIONS IN REHABILITATION RESEARCH (CONTINUED)
Mary Stuart, S. D., Chair of the Department of Sociology and Anthropology at the University of Maryland, Baltimore County, Baltimore, Maryland, USA, was the moderator for the next three case studies.
Dr. Stuart was formerly the Director of Medical Economics for the State of Maryland and was asked to study Medicare in Maryland and recommend changes in the state's system to allow more integration of good practices. In studying models of Medicare in the U.S., Dr. Stuart found them not productive. She, therefore, looked at international practices, publishing the systems called the "best in the world." She is now making recommendations to the state of Maryland to change their systems. She states that many of the international projects she observed started from collegial friendships.
She introduced the case study entitled U.S. Sweden (Telecommunication Access). The speakers for this study were:Gregg Vanderheiden, Ph.D., Professor and Director of the Trace Research and Development Center at the University of Wisconsin, Madison, USA;
Judith Harkins, Ph.D., Professor and Director, Technology Access Program, Gallaudet University, Washington, DC., USA; and
Gunnar Hellström, M.Sc., President, Omnitor, Stockholm, Sweden.
Three quite different types of collaboration are being carried out between the Trace/Gallaudet Rehabilitation Engineering Research Center (RERC) and Gunnar Hellström, president of Omnitor, a Swedish company focused on telecommunication, with a personal interest in deaf communication. Because of extensive experience with international collaboration, the parties to these partnerships agreed on the parameters of the partnership:
Work together, with independent finances; not just one group subcontracting work to another.
The groups who work together should have a common goal and find that, working together, they can get to that goal sooner and better.
The collaboration works best when the end goal is something that either of the parties would happily do all the work for.
The collaboration is thus seen as a sharing of the load and an increase in the ideas and resources for accomplishing it.
This collaboration works within those parameters. What is interesting in this presentation is that three projects are being described between Trace/Gallaudet and Omnitor-different types of projects, but working under the aforementioned parameters.
The first project described is one that updates and adapts, for the U.S., a video-assessment tool developed by Mr. Hellström. It is used to evaluate systems' ability to support signed languages and lip-reading. The partnership in this case, replicated and translated Omnitor's tool to assess sign language transmitted over networks. In the process of assessment, it was necessary to change the system's format, update technology, adapt to different linguistic and cultural needs, revise the tool based on experience, and make sure the final adaptation was user friendly. To accomplish this, there were only a few meetings, in the U.S. and scheduled with other Hellström travel, but internet communication was frequent, and the necessary transfer of very large files was accomplished also through the internet.
The advantages of this cooperation (vs. a single project) were that there was a rapid transfer of knowledge in an environment where video communication technology and the use of it are changing daily over the world. Sweden and the U.S. are the only countries with video relay services. The people interested in this project and capable of funding it are a very small community; thus a large funding grant could not have been obtained.
The second project described was the development and/or revision of standards to ensure access to mainstream telecommunication services by people who are deaf. What is important about this project is that widespread telecommunication services are always built on international standards: no standards-or "common language"-no telecommunication services. Often standards that assist minorities, such as persons with deafness, are seldom introduced in the standardization process from the beginning.-and later is usually too late. This project, then worked with building standards as they were needed, with no delays.
The main area of concern was standards for text and real time multi-media communication, which meant text in telecommunication services as well as sufficient video quality for sign language and lip reading. Activities which promoted standards were the sharing of information, the actual writing and creating standards in ITU, IETF and 3GPP (international standards organizations), and data from checking user views. As a result of these efforts between the partners, international standards for text telephony were developed and accepted; input from the U.S. was driven by the Trace/Gallaudet RERC; European input was advocated by Omnitor. The global telecommunication industry now has standards for gateways between text telephone and text in the internet as well as standards for the three media, video, text and voice, in real time communication of all (the accessible companion to voice telephony).
What was concluded from this second project is that:
international standards are essential for deployment of accessible telecom services;
if driven by accessibility actors, the big telecom company players are usually positive to creation of accessibility standards;
having people actively participating from varying parts of the world is essential for acceptance and completeness of standards;
rapid access to funding for international cooperation is essential for success in standards work.
there are only a very small number of researchers worldwide with needed background; therefore collaboration is essential in international standards development;
international standards work is time consuming-and getting worse;
standards work requires "turning on a dime" specifically you must generate a huge amount of correspondence so multiple partners with the same goals can contribute from different corners; and
sustained funding for standards work is almost impossible to obtain; Trace and Gallaudet believe that the somewhat flexible Center-based funding (RERC) is vital to accomplish the tasks with short time schedules.
The third project is called a Proof of Concept project. It implements a concept that emerged out of the standards work. It was spearheaded by the Trace/Gallaudet RERC using key technologies developed overseas. Essentially it was a strategy/concept/hardware/software that allowed divergent text and transport technology to work together. It was necessary to prove this concept in order to offer suggestions and credibility to the standards development. Therefore, this project also had the necessity of timeliness: the working models had to be developed within months of inception in order to have impact on the standards process. Fortunately project extensions were possible to complete the work and Omnitor had many of the fundamental technologies in hand. The goals were completed.
The conclusion of the researchers were that:
International collaboration can bring new resources to bear which can, in turn, make results more robust and shorten development/deployment timelines
Ongoing or quick funding opportunities are needed for collaborative research efforts in key areas such as international technology standards work.
For success, formal agreements are no match for two groups that just want to work together.
Dr. Stuart then introduced the research project funded between the National Institute of Child Health and Human Development (NICHHD)/National Institutes of Health(NIH) and the Italian National Research Institute (INCRA) Rehabilitation). The speakers for this presentation were:
Francesco Benvenuti, M.D., Geriatric Medicine and Clinical Neurophysiology Specialist, Director, Geriatric Rehabilitation, Italian National Research Institute on Ageing (INRCA), Florence, Italy, and
Steven J. Stanhope, Ph.D., Director, Physical Disabilities Branch, National Institutes of Health (NIH/CC), Bethesda, MD, USA.
This international scientific collaboration began in June 1989, when Dr. Benvenuti began work as a visiting scientist in Dr. Stanhope's Biomechanics Laboratory at the National Institutes of Health (NIH). At that time, personal and professional relationships were established. It was noted that NIH does research on physical properties such as gait analysis, while Dr. Benvenuti is responsible for a large clinical population that needs the results of good rehabilitation research. NIH is technology rich and INRCA is patient rich-a complementary research environment which developed into "grass roots" joint research. The fundamental basis of these collaborations lies in the complementary expertise (and motivational visions) brought by each individual towards a central rehabilitation research theme. Dr. Benvenuti's expertise includes managing large, multidisciplinary, clinical research programs focusing on the function and outcomes of people with diseases, disorders and injuries that result in disability, or a limitation of function. Dr. Stanhope and the NIH team contribute technical expertise and guidance in measurement and computer modeling methodologies that are designed to explore the pathways that link impairments to functional movement limitation and ultimately physical disability.
Ongoing activities include the development and implementation of research projects, information exchange, joint publications. (The partnership has produced at least twentyone publications so far, including posturographic protocols, published in 1999. Areas included are on topics of aging, Parkinson's Disease, osteoporosis/flexed posture, stroke and bradykinesia., exchange of scientists, and the development and implementation of training workshops.)
The speakers listed some of the obstacles they have encountered and some of the activities they have used to overcome them:
It is easier for the Italians to visit sites in Washington, DC, than for NIH personnel to visit Florence. Justifying travel is difficult when personal skepticism is prevalent, e.g., the note from the NIH administration which asks "So, what do you really expect to get out of this collaboration with a scientist from an exotic, beautiful, historically and culturally rich city in Europe?."
Communication is difficult in such long distances. Emails must be maintained, but offer only limited chance for discussion of complex issues. Telephone calls have a six hour difference; this project set a calling time, 8 a.m. Washington time, to which it adhered; this was a convenient time for Italy, and allowed consistent scheduling.
Language, too, was a barrier. The principals and staff had difficulty with each other's language; therefore all communications were simple, concise and elemental to prevent misunderstandings. Administrative justifications and official documents, likewise were kept simple in language to facilitate understanding.
Recognizing the cultural differences was necessary. Early on, each principal visited the other's agency. This was absolutely necessary to get a feel of the cultural differences, both in personalities, communication, and in work with patients, methodology, and the interpretation of data results.
Transmission of data over the internet proved more difficult than originally anticipated because of differing file formats and technological problems. In some cases, directions became misleading.
The protection of Human Subjects concerns caused the development of an IRB in Italy which applied for registration, and was accepted by the Office for Human Research Protection of the NIH. The NIH also reviewed the research protocols in its Bethesda IRB.
Finally, the difficulties in writing and approving reports, posters, protocols, etc. were partially solved by using joint writing software and the internet. Both parties often had to work on short deadlines, and these were sometimes facilitated by the six hour difference.
A highlight of the partnership was the training offered to staffs at both sites and other countries held in Italy. This was called, by the principals, "manufacturing opportunities." The workshop had the value of helping to standardize the vocabularies and data procedures of the partnership as well as bridging communication barriers in the staffs. Also, it was a chance to put together some of the results into a training course that will be useful to rehabilitation centers everywhere.
The speakers reiterated the fact that the partnership had been challenging, but a joy between them because it facilitated their personal visions of rehabilitation growth and change. They stated that "personal dreams are often as important as professional goals."
The final case study of the morning was introduced by Dr. Stuart. It was a case study of a partnership between biomedical labs in the USA and France: Stanford University/Veterans Affairs (VISIT: Virtual Knowledge-Based Network for Integrating Assistive Technologies) France (Robotics). Speaking for this project were:
Mounir Mokhtari, Ph.D., Associate Professor, Disability Engineering and Communication Laboratory, Institut National des Télécommunication, Evry, France, and
Machiel Van der Loos, Ph.D., Biomedical engineer, Rehabilitation Research and Demonstration Center, Veterans Administration Palo Alto Health Care System, Palo Alto, California, USA.
This presentation describes a proposal that will be submitted to the European Union (EU) in the Fall of 2003 in response to the EU's Sixth Framework Call for Proposals in the Network of Excellence category. Separate funding for the U.S.-based work will be sought from Federal U.S. sources such as the Department of Veteran's Affairs (VA) and the National Science Foundation.
Information, communication, and mechatronic technologies are considered by the rehabilitation research community as new opportunities to increase the well-being of people with disabilities and consequently provide a more equal place for them in society. For effective delivery of these technologies, researchers must be able to integrate different professional fields in medicine, engineering, evaluation, and management disciplines. The distributed availability of competencies and infrastructures around the world impel the field to harness these diverse capabilities through a "network of excellence" which involves key researchers in both Europe and the USA.
The Network will have two foci: therapy and assistive devices. The network concept has a fruitful history. Through visits of both U.S. and French scientists to each other's laboratories, through meetings at Forums such as RESNA, AAATE, IEEE-ICRA and others, personal and professional relationships and complementary research have been identified. Some workshops in rehabilitation and robotics have shown even more possibilities of efficient research opportunities. A sabbatical visit of a French professor, Prof. Chantal Ammi was supported by France Telecom and documented research collaboration and funding opportunities in the U.S. It is now being put together as a research proposal that will involve many agencies and research centers, and provide funds (at least to the European side) for flexible usage in promoting international research. It is hoped that the U.S. will respond with similar funds.
Questions and Answers were directed to Drs. Mokhtari and Van der Loos.
Q Is EU funding available to
U.S. researchers for joint collaborative
A The question was answered by a researcher from Italy. Funding is available to U.S. researchers only if that researcher is a key agent. The research (and research funds) must stay in Europe; therefore any Americans are consultants or subcontractors.
ACCESSING INFORMATION ABOUT INTERNATIONAL AND U.S. RESEARCHERS
This section of the Forum features two agencies which provide, to the public, information about rehabilitation research. The purpose of these presentations is to help any researcher find out what other research relates to their topic of interest, where other researchers are who might be collaborators, and how proposed research may be used to fill research and knowledge gaps.
The first presentation is from the NIDRR-funded Center for International Rehabilitation Research and Information Exchange (CIRRIE). The topic is Assessing Information about International Researchers. The representative for this agency (the hosting agency of this Forum) is:
Marcia E. Daumen, M.L.S., Information Resources Manager, Center for International Research Information and Exchange (CIRRIE), State University of New York at Buffalo, Buffalo, New York, USA.
CIRRIE has an international rehabilitation resources database that provides unique information for international rehabilitation researchers. Its website address is http://cirrie.buffalo.edu. That website will take the researcher to any aspect of the CIRRIE resources, which include an international rehabilitation research database, information on CIRRIE travel grants, resources on cultural diversity, schedules of rehabilitation Forums, both domestic and international and CIRRIE Forum proceedings.
Ms. Daumen then proceeded to demonstrate how to use the various resources of the CIRRIE website:
The CIRRIE Database of International Rehabilitation Research is a collection of rehabilitation research conducted outside the United States. Its over 20,000 citations start in 1990. It also includes the products of commercial and non-commercial databases and non-indexed journals. Much of the material is "fugitive" material that is non-juried by American peers and includes submissions by authors. There are abstracts of each citation and links to the full text when possible. It can be searched by Subject headings (using the attached CIRRIE Thesaurus), by the Author, and by Title Keywords. The search can also be limited to specific research areas, e.g., special education, or health and function, by country or geographic area, by the language of the publication, and by the date of publication.
A searchable directory of research facilities, non-U.S. Government agencies, and international organizations and associations is on the website. It is called the country directory. Entries contain contact information, URLs and descriptions.
A list of international rehabilitation/disability Forums is updated monthly. An archive of selected Forum proceedings is planned for the near future. All CIRRIE Forum proceedings are posted and available. This Forum proceeding is expected to be posted in December, 2003.
Communication with researchers sharing similar interests is fostered through CIRRIE's RehabTalk. This section of the website contains a collection of electronic discussion lists and a bulletin board to post messages.
Because of CIRRIE's interest in cultural diversity, and its work on the cultural perspectives of the major immigrant groups in the U.S., the site contains the CIRRIE monograph series, workshops and training programs, including a computerized training program.
Access to the travel grant program, including the rules for using travel grants as well as the application forms, are available from the home page.
The CIRRIE database is an excellent catalyst for developing international partnerships, from surveying existing states-of-knowledge to finding research colleagues with similar interests and activities. It offers ways to make personal contact with potential international research partners.
The second presentation on rehabilitation information was presented by the National Rehabilitation Information Center (NARIC). The speaker was:
Mark Odum, Director of the National Rehabilitation Information Center, Lanham, MD., USA.
The National Rehabilitation Information Center (NARIC) maintains Internet resources that are useful for identifying publications, researchers, and research projects related to disability and rehabilitation in the U.S. These resources may be especially useful for researchers outside the U.S. in identifying individual researchers and research initiatives in their field.
NARIC has a record of 25 years of "Information for Independence." Funded by the National Institute on Disability and Rehabilitation Research of the U.S. Department of Education, it started as an information system in 1978. In 1982 it operated for its consumers through a toll-free telephone number, and in 1989, NARIC entered the digital age with bulletin boards systems and a CD distribution of its rehabilitation research literature database, REHABDATA. In 1994, http://www.naric.com was established, significantly improved in 1996, and, through it, five databases were developed in 1997: 1), REHABDATA, 2), NIDRR Program Directory, 3), Compendium of Products of NIDRR Grantees and Contractors, 4), Knowledgebase of organizations, agencies, periodicals and Internet resources, and 5), the Calendar of Events. In these 25 years, NARIC's collection has grown to more than 70,000 documents, and REHABDATA has become the premier index of disability and rehabilitation literature utilized by libraries in North America, Asia and Europe. (For a specific REHABDATA search or download, skipping NARIC.com, the website address is http://www.naric.com/search/rhab/thesaurus/. In addition to Internet searching, however, live searching is possible through information specialists at NARIC. The hours of service are 9 to 5, Monday to Friday; telephone is 800-346-2742 (v); 301-459-5984(tty); Email is email@example.com.
In addition to these databases, the following information services are available:
In 1999 NARIC developed the Instant Disability Information Center: one-click access to NARIC resources and topic-specific browse pages to guide users through more than 72,000 resources.
REHABDATA Connection Alert service was established in 1998. The monthly email service helps information "power users" stay up to date on the latest in disability and rehabilitation research-there are now more than 600 subscribers worldwide.
RehabWire newsletter, also introduced in 1998, was developed for NIDRR personnel to explore the rich diversity of research the institute funds, to present the latest acquisitions in topic specific bundles, and to alert staff to issues and events in the field. The newsletter is available to the public online.
NARIC considers itself to be a global information center for rehabilitation data. In 2002, NARIC received and responded to 94 requests from 31 countries. NARIC has hosted representatives from Saudi Arabia, Canada, Japan, Taiwan, India and Great Britain. Eleven percent of REHABDATA Connection subscribers come from known international domains. REHABDATA indexes list more than 3,500 articles on disability and rehabilitation issues in countries other than the U.S. 210 of these documents were added in the last five years. About ten percent of journals indexed in the collection are edited and published outside of the U.S. Thus, NARIC has become known by the U.S. rehabilitation field as "A National Resource with an International Audience."
FUNDING AGENCY PERSPECTIVES: RECOMMENDATIONS TO RESEARCHERS ABOUT INTERNATIONAL PROPOSALS
This section of the Forum was moderated by Joel Mykelbust, Ph.D., Director, Planning, Budget and Evaluation Division, National Institute on Disability and Rehabilitation Research (NIDRR), Washington, DC., USA. The purpose of this section was to receive comments from representatives of various U.S. Governmental agencies about their positions and resources in funding collaborative international research in rehabilitation.
The first agency to speak was the National Institute on Disability and Rehabilitation Research (NIDRR) of the U.S. Department of Education. The representative for NIDRR (which also provides support for CIRRIE and this Forum) was:
Francis V. Corrigan, Ed.D., Deputy Director, National Institute on Disability and Rehabilitation Research (NIDRR), Office of Special Education and Rehabilitative Services (OSERS), U.S. Department of Education, Washington, DC, USA.
NIDRR is primarily a domestic agency. Therefore, not all of its funds are available for international funding. What makes NIDRR different, however, is NIDRR's statutory authority, which includes a provision that gives NIDRR permission and the authority to fund international projects which also promote growth in the U.S. rehabilitation field.:
Research grants may be used to conduct a program
for international rehabilitation research, demonstration, and
training for the purpose of developing new knowledge and methods in
the rehabilitation of individuals with disabilities in the United
States, cooperating with and assisting in developing and sharing
information found useful in other nations in the rehabilitation of
individuals with disabilities, and initiating a program to exchange
experts and technical assistance in the field of rehabilitation of
individuals with disabilities with other nations as a means of
increasing the levels of skill of rehabilitation
Rehabilitation Act of 1973 as amended by P.L. 105-220, Section 204 (b)(6).
Can be viewed on Internet at http://www.access-board.gov/enforcement/Rehab-Act-text/title2.htm
The "bottom line" of this statutory reference is that international research funded by NIDRR must show some relevance and benefit to the U.S. rehabilitation field. In a broader context, the U.S. Department of Education supports international research in other areas that might be described as comparative research, educational evaluation, or international evaluation. Examples are projects with the Organization for Economic and Cooperative Development (OECD) of the U.N. and projected projects with the United Nations Educational Scientific and Cultural Organization (UNESCO) of the U.N.
There are many different types of projects funded by NIDRR. International research is not a part of or fundamental to all research projects in NIDRR, but those that can or do engage in international research dimensions will be summarized as follows:
Rehabilitation Research and Training Centers. NIDRR's Rehabilitation Research and Training Centers (RRTCs) conduct coordinated and integrated advanced programs of research targeted toward the production of new knowledge, which may improve rehabilitation methodology and service delivery systems, alleviate or stabilize disabling conditions, or promote maximum social and economic independence for persons with disabilities. Operated in collaboration with institutions of higher education or providers of rehabilitation or other appropriate services, RRTCs serve as centers of national excellence in rehabilitation research. Also, they are national or regional resources for research information. These centers conduct graduate, pre-service and in-service training. The centers also disseminate and promote the utilization of research findings. The RRTC sometimes have international foci as part of their mission, exchanging scientists and data with international programs.
Rehabilitation Engineering Research Centers. Rehabilitation Engineering Research Centers (RERCs) conduct programs of advanced research of an engineering or technical nature designed to apply advanced technology, scientific achievement and psychological and social knowledge to solve rehabilitation problems and remove environmental barriers. Each center is affiliated with one or more institutions of higher education or nonprofit organizations. Involved at both the individual and systems levels, RERCs seek to find and evaluate the newest technologies, products, and methods that ultimately can benefit the independence of persons with disabilities and the universal design of environments for people of all ages. RERCs can have an international focus, which may have been suggested by contact and information provided through professional and international organizations such as the Rehabilitation Engineering Society of North America (RESNA) and the Institute of Electrical and Electronics Engineers, Inc., (IEEE).
Field-Initiated Projects. The Field-Initiated Projects (FIPs) are designed to encourage eligible applicants to originate valuable ideas for research and demonstrations development or knowledge dissemination activities in areas, which represent their own interests yet are directly related to the rehabilitation of people with disabilities. FIPs are not restricted purely to domestic projects; thus international researchers may apply for these types of projects together with a U.S. applicant. There are two different types of projects available under the FIPs: research projects and demonstration projects.
Fellowships. Fellowships, named for the late Mary E. Switzer, give individual researchers the opportunity to develop new ideas and gain research experience. There are two levels of fellowships: Distinguished Fellowships go to individuals of doctorate or comparable academic status, who have had seven or more years of experience relevant to rehabilitation research. Merit Fellowships are given to persons with rehabilitation research experience, but who do not meet the qualifications for Distinguished, usually because they are in earlier stages of their careers. Fellows work for one year on an independent research project of their design.
More information on any of the programs, and the announcements and applications for projects may be found through the various resources of the NIDRR website: http://www.ed.gov/about/offices/list/osers/nidrr/index.html?src=mr
In addition to these funding possibilities, there are other centers and grants that focus on international matters. These are centers and grants that were announced and requested as special centers by NIDRR. They include CIRRIE, the host of this Forum, and also a Landmine Survivors RERC, and an international internet disabilities E-zine project, Disability World.
Dr. Robert Jaeger is responsible for interagency and international affairs at NIDRR.
Dr. Myklebust then introduced the National Institutes of Health (NIH)/John E. Fogarty International Center. The Speaker for the center was:
Kenneth Bridbord, M.D., M.P.H., Director, Division of International Training and Research, Fogarty International Center for Advanced Study in Health Sciences, National Institutes of Health (NIH), Bethesda, MD, USA.
The Fogarty Center is an agency of the U.S. Government that is totally devoted to international research, although to date it has a limited repertoire in rehabilitation research. Many of its programs, however, are broad enough to cover rehabilitation. For instance, there are large international programs in Brain Disorders and in Stigma. It is likely that the Center will enlarge its rehabilitation research portfolio when it activates its new initiatives of Environmental and Occupational Health. Trauma and injury (particularly in the workplace) will be priorities for Fogarty Center funding. International rehabilitation research, then, is just a matter of the researcher finding the Fogarty Center, researching its research culture, and drafting a very careful and comprehensive proposal based on the principals that Dr. Hrynkow (keynote speaker) and Dr. Bridbord discuss.
To receive a Fogarty Center international grant, the applicant must have a research grant from the NIH. That grant can then be expanded to an international perspective-particularly in the developing world. The Mission of the Fogarty Center is called the Global Research Initiative: to "promote and support scientific research and training internationally to reduce disparities in global health."
Fogarty Center can support junior scientists as well as
international research scientists. There are a series of Fogarty
Centers; 14 of these Centers have rehabilitation-type research.
These centers can also provide small grants to researchers
effecting complementary research with international
interpretations. It is hoped that in the future,
NIDRR and NCMRR will consider
fitting some of their Networks of projects within the Fogarty
Center Networks of centers and/or grants.
(For information on what is Funded by the Fogarty center in the various regions of the world, use the website: http://www.fic.nih.gov. For information on application, the website is: http://www.fic.nih.gov/programs/grants.html#research. In this website there is also information on research funding available outside of U.S. Federal agency funds.)
In most Fogarty Center grants, several guidelines must be followed:
The research effort must require a long term effort. Some important projects are currently in their fourth five-year funding cycles. Thus, stability and long-term commitment are essential to a significant international research project.
A funded Fogarty Center grant requires both individual and institutional partnerships. An initial award is made to a U.S. Institution partnering with one or more institutions in developing countries. The long-term goal of these grants is to build centers of research excellence.
Each project requires simultaneous investment in research and training. Each reinforces the other.
The project requires commitment for long-term mentoring. Formal, short-term training programs are not usually adequate to assure a stable supply of scientists and a stability of research procedures.
Trainees must be strategically selected from those who have a strong commitment to return home (to the developing country).
The project must respond to local needs and priorities. This is often a difficult concept for American researchers, but is essential to long-terms goals of the project.
Scientists of the developing countries must participate meaningfully in the selection of trainees and research projects.
Flexibility-of long and short-term training, of U.S. and in-country training, of multidisciplinary training, and networking-is absolutely necessary. No project follows a straight line. Research results change the content of training. Local training methods vary from place to place. Only flexibility will keep a project on track.
The "center of gravity" for training must shift to the developing countries from the U.S. side as the project progresses.
The research capacity must always be strengthened as it progresses.
The project must develop leadership among its trainees, researchers, and its subjects.
The Fogarty International Center hopes for more proposals from the National and international constituencies of NIDRR.
Dr. Myklebust then introduced the National Center for Medical Rehabilitation Research (NCMRR) of the National Institutes of Health. The representative of the NCMRR was:
Michael Weinrich, M.D., Director, National Center for Medical Rehabilitation Research (NCMRR), National Institutes of Health (NIH), Bethesda, MD, USA.
The National Center for Medical Rehabilitation Research (NCMRR) was established within the National Institutes of Health (NIH) by legislation (P.L. 101-613) passed in 1990. The Center is a component of the National Institute of Child Health and Human Development (NICHD). The mission of NCMRR is to foster development of scientific knowledge needed to enhance the health, productivity, independence, and quality of life of persons with disabilities. This is accomplished by supporting research on enhancing the functioning of people with disabilities in daily life. A primary goal of the Center is to bring the health related problems of people with disabilities to the attention of America's best scientists in order to capitalize upon the myriad advances occurring in the biological, behavioral, and engineering sciences.
The National Institutes of Health consist of 27 Institutes and Centers and have an annual budget (in Fiscal Year 2003) of $27 billion. Nearly 71% of that budget is spent for research grants. From Fiscal Years 1994 to 2000, budgets of foreign components of domestic awards have grown greatly, to over $120 million in 2000.
International awards for research from the NIH appear, generally, to address six international issues. These issues are:
the organization of health care delivery;
the organization of health care financing;
characteristics and treatment of patient populations;
spectra of disease and disabilities;
technological resources; and
attitudes toward health, prevention and cooperation.
There are no standard priorities for international research among the Institutes and Centers of the NIH. Priorities vary institute by institute. In general, however, they usually require unique patient population, and/or unique patient problems and/or unique expertise.
When seeking NIH grants, there is a certain lingo, a vocabulary that you will learn. This lingo describes the various kinds of research grants and their components. As an applicant you will have to know this lingo, both to decide what type of grant for which you will apply, and how to project a budget within it. Common terms are:
RO1-an investigator-initiated research grant;
RO3-a small research grant;
R21-an exploratory research grant;
P grants-program research grants;
Direct Costs-funds awarded to do research activities;
Indirect Costs-funds awarded, within a research grant, for institutional or management costs; and
Hypothesis Driven-this is the core of almost all research funded by the NIH. It is considered the NIH "mantra."
(For more detailed information about research grants from NIH including examples, use the website: http://grants1.nih.gov/grants/oer.htm.)
As important as it is to know about the research opportunities of NIH, it is also important to know how an application will be peer reviewed. The quality of the grant must be high enough-or specific enough-to pass the peer review given it. These are the general outlines of the peer review process:
Each application is assigned to a study section when it is received and has gone through a preliminary inspection.
Each study section has specific expertise in the area of the grant application.
All applications are judged on scientific merit.
All applicants receive critiques of the application by the peer reviewers.
If an applicant does not receive a grant, he/she may re-submit the project at the next application deadline
Institutes weigh scientific merit very heavily in funding decisions.
There are many helpful resources to the potential applicant of a grant from NIH. There are databases with all NIH-funded projects to compare your application with existing ones or to find a colleague with similar interests. There are Institute web pages to assist you in finding appropriate institutes to accept your application(s). Finally, an online grant-writing tutorial exists to help you in writing a competitive application.
NIH welcomes quality research applications that have relevance to American health, but may also contain international issues.
Dr. Myklebust then introduced Mr. David Levin, Senior Program Manager and Diversity Coordinator, from the Bureau of Educational and Cultural Affairs, U.S. Department of State, Washington, DC, USA.
The Bureau of Educational and Cultural Affairs (ECA) of the U.S. Department of State fosters mutual understanding between the United States and other countries through international educational and training programs. (The Home page of ECA is: http://exchanges.state.gov. On this home page are links to all the programs mentioned in the talk.) The bureau does so by promoting personal, professional, and institutional ties between private citizens and organizations in the United States and abroad, as well as by presenting U.S. history, society, art and culture in all of its diversity to overseas audiences. The disability community is a part of the diversity of the United States.
The Bureau has a budget of about $400 million. Most of that money is for exchanges. For instance, $300 million is for use of the Fulbright Exchange program, which offers, among its other awards, 800 Fulbright grants per year, just for international teaching.
There are many open competitions, however, for international exchange and international programs involving disability issues. The ECA is very interested in finding out what you would do, if given State Department funds, why you would do that, what benefits there would be for the U.S. and for the host country, and how what you would do would benefit the U.S. rehabilitation research community. ECA can be flexible in its awards and may be another potential source of funding projects with international parameters.
ECA is very interested in
CIRRIE's exchange program, especially since it
seems to foster research programs through its contacts. Your
attention is directed to the Fulbright programs which may have even
more ability to facilitate research. Fulbright fellows can come to
the U.S., as well as vice versa. The population of
scholars who receive Fulbright awards is not limited to faculty and
researchers, but 300 grants per year are awarded to graduating
seniors. The latest type of Fulbright may be of interest to active
researchers who cannot leave their research for an entire semester:
the Fulbright Senior Specialists are peer reviewed and registered
experts who are picked by the Fulbright Commissions to provide a
consulting service to a country that requests it. These awards are
from two weeks to six weeks; the total application process is
online and the research roster is being developed now, in the third
year of the Senior Specialist program .
(Detailed information on all Fulbright awards, including the Senior Specialist awards, can be found at the Center for International Education Services (CIES), the facilitating contractor for Fulbright awards. The website is http://www.cies.org.)
You are invited to examine some of the international exchanges (found on links from ECA website) and their effects. You will find that there are many exchanges involving disabled persons and issues, particularly in exchanges from Europe and Asia. Also, you will find that many Institutional grants are helpful to both disabled students and researchers.
One of the most popular grant programs is the Citizen's Exchange program. With these grants, institutions in the U.S. are able to facilitate research and exchanges, including students and researchers who are disabled.
Many projects from ECA are unique and have requirements not covered in other grant applications. It is wise for a first-time applicant to talk with a Grants Officer or staff member prior to submitting an application. Guidance will be given when possible about the acceptability of a request or appropriateness of budget requests. I am more than happy to receive such requests, particularly when they contain disability issues. I can be reached at firstname.lastname@example.org or by telephone at 703-629-4360.
Concluding the section on U.S. Federal funding for international projects, Dr. Myklebust took questions from the audience.
Q If I call a Federal staff member about a
project I wish to submit for funding, how helpful can they be to
me. Are they in a conflict of interest in advising me about a
A As helpful as possible, on a personal, non-binding level. If there is advice they cannot give you, they will tell you that, without bias. The best way to ask a question is to send a one-page summary of your project to a project officer, and ask for advice. Follow this up with a telephone call.
A (From David Levin): In the State Department we would like very much to talk to you before you write the grant. Further homework can be done by the applicant who researches the website: http://www.iawg.gov; (the Interagency Working Group on International Exchanges) to get more insight into fundable grant applications to ECA.
Q (to Dr. Weinrich, NIH): In your quote on research costs, were those for direct costs?
A Yes, those costs quoted (71% of budget) were for direct costs of research.
U.S.-LATIN AMERICAN RESEARCH COLLABORATIONS IN HEALTH AND REHABILITATION
This section was moderated by Eva Gavillan, Ed.D., Program Officer, National Institute on Disability and Rehabilitation Research (NIDRR), Washington, DC, USA. Dr. Gavillan is the CIRRIE and other international projects officer in NIDRR. She has been a Fulbright Fellow (to Panama) and is now on the Fulbright Senior Specialist roster.
Dr. Gavillan announced the topic of the next section: Rehabilitation Collaboration in the Western Hemisphere: The Pan American Health Organization (PAHO) Perspective. A speaker from PAHO was introduced:
José Miguel Caldas de Almeida, M.D., Ph.D., Coordinator, Mental Health Program, Pan American Health Organization (PAHO), Regional Offices of the World Health Organization for the Americas, Washington, DC.
Dr. Almeida was unable to attend the meeting. Knowing that the contribution of PAHO was vital to international disability research between the U.S. and Latin America, CIRRIE presents the following extracts the PAHO website.
The Pan American Health Organization (PAHO) is an international public health agency with 100 years of experience working to improve health and living standards of the people of the Americas. It enjoys international recognition as part of the United Nations system, serving as the Regional Office for the Americas of the World Health Organization, and as the health organization of the Inter-American System.
PAHO is based in Washington, D.C., and has scientific and technical experts at its headquarters, in its 27 country offices, and its nine scientific centers, all working with the countries of Latin America and the Caribbean in dealing with priority health issues. The health authorities of PAHO's Member States set PAHO's technical and administrative policies through its Governing Bodies. PAHO Member States include all 35 countries in the Americas; Puerto Rico is an Associate Member. France, the Kingdom of the Netherlands, and the United Kingdom of Great Britain and Northern Ireland are Participating States, and Portugal and Spain are Observer States.
The Organization's essential mission is to strengthen national and local health systems and improve the health of the peoples of the Americas, in collaboration with Ministries of Health, other government and international agencies, nongovernmental organizations, universities, social security agencies, community groups, and many others.
PAHO promotes primary health care strategies, which reach people in their communities, to extend health services to all and to increase efficiency in the use of scarce resources. It assists countries in fighting old diseases that have re-emerged, such as cholera, dengue and tuberculosis, and new diseases such as the spreading AIDS epidemic, providing technical cooperation including education and social communications support, promoting work with non-governmental organizations, and support for programs to prevent transmission of communicable diseases. The Organization is also involved in prevention of chronic diseases such as diabetes and cancer, which are increasingly affecting the populations of developing countries in the Americas.
In its efforts to improve health, PAHO targets the most vulnerable groups including mothers and children, workers, the poor, the elderly, and refugees and displaced persons. It focuses on issues related to equity for those who lack access to health, and on a Pan American approach encouraging countries to work together on common issues.
PAHO disseminates scientific and technical information through its publications program, its Internet site , and a network of academic libraries, documentation centers, and local health care libraries.
It expedites health promotion to help countries deal with health problems typical of development and urbanization, such as cardiovascular diseases, cancer, accidents, smoking, addiction to drugs and alcohol, and others.
The Organization also executes projects for other United Nations agencies, for international organizations such as the World Bank and Inter-American Development Bank, for official development cooperation agencies of various governments, and for philanthropic foundations.
PAHO strengthens the health sector capacity in the countries to advance their priority programs through intersectoral action, promoting an integral approach to health problems. It also works to improve women's health, promoting the greater integration of women in society, as well as awareness of their importance as both recipients and providers of health services.
PAHO trains health workers at all levels, through fellowships, courses and seminars, and the strengthening of national training institutions. (Resources are linked to website: http://www.paho.org/English/DPM/SHD/HR/pfsiabout.htm) It leads in the use of advanced communications technologies for information, health promotion, and education, working with journalists in many countries.
The Research Grants Program is a special fund administered by the Research Coordination of the Pan American Health Organization, through which it facilitates the process of generating knowledge in diverse fields of public health and collaborates in strengthening the research capacity of Latin American and Caribbean countries.
Dr. Gavillan introduced the next topic, Partnerships and Strategic Alliances: A Concrete Way to Reduce Global Disease Burden and Health Disparities. This topic was developed by:
Luis Salicrup, Ph.D., Program Officer, the Americas and Canada Program, Division of International Relations, John E. Fogarty International Center for Advanced Study in Health Sciences, National Institutes of Health (NIH), Bethesda, MD., USA.
Much has already been said about the Fogarty International Center (FIC) of the NIH. What will be of interest in today's meeting is expressed in the mission statement of the FIC:
Promote and support scientific research and training internationally to reduce disparities in global health.
The FIC staff calls this Science for Global Health.
Partnerships between FIC and Latin-American countries have been a major activity in meeting this mission with Latin America. (For further detailed description of activities and listings of potential grants and partnerships, go to http://www.fic.nih.gov/regional/americas.html#top.) The FIC of the U.S. National Institutes of Health and several Government and Non-Government Organizations in the United States, Mexico, Brazil, Argentina, Chile, Canada, Colombia, Costa Rica, and other Latin American and the Caribbean (LAC) countries have developed partnerships and strategic alliances aimed at working to strengthen cooperation in the fields of biomedical and behavioral sciences, and related training.
These partnerships also have been developed with international organizations and professional societies such as the World Health Organization, the Pan American Health Organization, the World Bank, the Wellcome Trust (U.K.), the Third World Academy of Sciences, the American Society for Microbiology and the European Molecular Biology Organization.
All of these agencies and organizations have common interests with Fogarty. Among the areas of common interest are: infectious diseases including HIV/AIDS, maternal and child health, occupational and environmental health, genetics/genomics, medical informatics, cancer, cardiovascular disease, brain disorders, clinical research, operational and health services, mental health, women's health, border health research and addictive disorders such as alcoholism. In addition, participating parties intend to work in partnerships and within the missions of their respective agencies to advance efforts that reduce global health disparities.
Partnerships have often taken the form of co-funding projects with Fogarty or multiple partners. This "buys in" to program direction, leadership, and relevance of data and assures the continuity and the sustaining of the research program over time. Mechanisms supporting collaboration with FIC include:
co-funding for post-doctoral training at NIH-the Pan-American Fellowship Program (PAF)
co-funding in all of FIC's research-training programs on infections and chronic diseases, environmental health, bioethics, medical informatics, etc.
co-funding of selected FIC's research programs, including the Brain Disorders in the Developing World; Research Across the Lifespan; the Fogarty International Collaborative Award (FIRCA); Health, Environment and Economic Development (HEED); Stigma and Global Health Research Program; and the Global Health Research Initiative Program for New Foreign Investigators (GRIP).
identification of training opportunities for researchers, including those from developing countries
the exchange of scientists
xchange of information
collaboration on the possible establishment of LAC (Latin American and Caribbean) countries of an NIH Alumni Association
exchange of materials
joint research projects
other forms of cooperation, including support for developing country Latin American and Caribbean scientists in joint U.S.-Mexico, U.S.-Brazil, and U.S.-Canada efforts, subject to the availability of resources
organization and conduct of workshops.
Major dissemination and utilization occur through regional workshops produced from these partnerships. Examples of the major workshops are as follows:
NIH-LAC Research Cooperation Workshops
2000Pan American Symposium on Molecular Approaches to Disease
2001Health and the Environment
Nutrition/Micronutrients in Central America
2002HIV/AIDS in the Caribbean
2nd Pan-American Symposium on Molecular Approaches to Human Disease
2003Latin America and the Caribbean Grant-Writing Workshop
It appears to the speaker that the following have been keys for the successful partnerships fostered between Fogarty and their Latin American and other partners:
The clear understanding of the mission, vision, goals, strategic objectives, programs and activities of all the participating partners;
Identification of common synergies;
Strategic linkages (through creativity, trust, and perseverance);
The involvement of all stakeholders in the conceptualization, implementation, and evaluation of the program-related activities and initiatives, with emphasis on the competitive advantages of biomedical and behavioral research in reducing global disease burden and health disparities.
Dr. Gavillan allowed questions:
Q In peer reviewing Fogarty grants, is a
special or separate study section used?
A A special study section is convened for international training grants, called IFP. Fogarty often uses NIH study sections for content. Selection of the peer review study section varies case by case.
Dr. Gavillan then introduced the final case study of the day: Brain Injury Rehabilitation-the Argentina Project. Its participants were:
Walter Videtta, M.D., Chief, Intensive Care Unit (ICU), Hospital Nacional Professor Alejandro Posadas, Buenos Aires, Argentina, and
Nancy Carney, Ph.D., Assistant Professor, Department of Medical Informatics and Clinical Epidemiology, Oregon Health and Science University, Portland, Oregon, USA.
In August 2000, a research project was initiated and funded by the NIDRR to compare outcomes for patients with traumatic brain injury (TBI) between the United States and Argentina . Cases from the NIDRR-funded TBI Model System database-all recipients of U.S. rehabilitation-would constitute the treatment group. They would be matched and compared to cases from Argentina, where there is no rehabilitation for TBI. U.S. investigators traveled to Argentina and trained a team of physicians in all aspects of the research protocol. Three years later, there are 278 cases in the Argentina dataset.
This presentation focuses on: 1) discovery and resolution of hidden cultural differences, 2) confronting new questions as the research progressed, and 3) reconciling the disparity between what is needed and what is available for patient care. The conclusions are those of the speakers, not the sponsors.
There were many logistic and language challenges (and obstacles) between the U.S. and Argentine administrators which had to be solved in order to keep the data comparable. The differences between the investigator team on both sides were formidable.
Language differences required constant vigilance and definitions worked out between the investigators (both U.S. and Argentine Co-Principal Investigators).
There was a starting-point difference between the two teams. Both had accommodated to science and cultural medical tradition that were quite different to both sides.
Across hospitals, there were differences in: 1) the interpretation of protocols; 2) medical informatics systems for treatment. All of these problems had to be ironed out through agreement, training, and usage.
It was found that of the five Argentine hospitals, two were not productive of valid data. Therefore, they had to be dropped from the study-diplomatically.
Cultural challenges abounded.
Whereas U.S. staff could state positives or negatives quite openly, the Argentines practiced a culture of more gentility and diplomacy. They found it difficult, sometimes impossible, to say "no." Thus, they were sometime reduced to effecting a negative decision through secondary, or more passive activities. North Americans had to learn to "re-interpret" the actions and words of their South American colleagues.
The U.S. staff was direct (seemingly rude, to the Argentines) and could challenge their superiors. The Argentine staff could not do this.
Discussions were, at first, conducted with completely different ground rules between the two sides. They took a great amount of time at first, and it was the Argentines who made most of the changes, sometimes seemingly out of politeness.
The medical staff had a different hierarchical style. Argentina had a strict doctor and nurse concept of roles; the roles were different, and formally complementary. The U.S. staff had more of a teamwork approach, with a blurring of roles. Data gathering was thus ambiguous to the Argentines, and compromises had to be suggested.
There were also differences between the patient populations and this provided challenges to the collection of pure data.
In Argentina, patients were proud to be in the study. In the U.S., it was sometimes perceived as a nuisance.
The difference between socioeconomic status of patients in both countries added another variable that had to be controlled.
At follow-up data gathering, patients, particularly the Argentine patients wanted to be better than they were, and often faked recovery.
Patients did not need compensation in Argentina; they requested it in the U.S..
There were differences in the patient's perceived actions for prevention. Prevention was less a concept in Argentina than in the U.S..
Dramatic differences occurred in the family involvement with TBI. Argentina has an intact family system with a sense of family responsibility, whereas the U.S. fosters an "independent living" philosophy.
In Argentina there is no culture to "let the patient die." Extraordinary measures must always be taken when death is possible.
Some logistical obstacles took a great deal of time and effort to correct.
Credit cards, the basis for purchase of equipment, travel, food, etc. in the U.S., did not work in Argentina.
he economic crisis in Argentina made travel extremely difficult, not only from the U.S. to Argentina, but within the country.
he NIDRR grant was a Field Initiated Project with limited funds, and it was difficult to budget grant-related travel in South America.
IPR, or federal-wide assurance protecting the safety of patients was seen as a negative bureaucratic requirement in Argentina.
Some interesting obstacles occurred in the interpretation of data.
The data collection revealed different things not previously known about patients in Argentina.
The interpretation of the data begins to point to new roles for the ICU in treating TBI. These recommendations are seen as potentially negative to a system that functions on a traditional basis.
It became obvious that the public health system of Argentina was failing persons with TBI. Without rehabilitation provided by this system, the medical system was creating a whole new pool of disabled people.
Some of the outcomes of the research partnership which promoted better data, more effective professionals, and a stronger TBI system in both countries were the following:
The project upgraded the Argentine computer equipment, which created cleaner data, more on-time data collection, and allowed for more frequent communication between both parties.
Both sides were able to identify a multi-lingual Project Manager. This step alleviated many of the language problems, or at least clarified them for solution by the professionals.
A professional exchange was started between the Argentines and the Oregonians. Both profited immensely, and these exchanges did more to resolve cultural obstacles than any other actions.
The Oregon staff promoted autonomy in their Argentine colleagues. They taught them to write grants and introduced them to other potential partners and collaborators both in the U.S. and in Oregon's contact in the international field.
Together, the Oregonians and the Argentines created the Latin American Brain Injury Consortium (LABIC) which assures sustainability of the interest and activities of the project and takes the TBI professionals in South American to a high level of cooperation and partnership. LABIC is dedicated to improving patient outcomes. It has 14 Latin American countries as partners at the present time. It uses and pioneers (and teaches) medical informatics technology. It develops community resources. It institutes prevention programs. It liaisons with industry to provide funds and prevention.
What have the partners learned from the lessons of working together? The speakers shared the following insights:
Cement existing relationships between individuals. No international program is between co-directors, or professional colleagues; it is between individuals-individuals who like and trust each other. This personal relationship must be taken into account as much as the professional relationship.
Before starting, it would be wise to make sure that both partners can actually collect the proposed data. This is an aspect of the projects that sometimes gets overlooked in the glow of creative visions.
Research questions must be adapted to the target country, not to the U.S. and its systems and traditions.
Make sure there is enough money that can be used flexibly.
Be careful about cross-cultural comparison studies. Be realistic. In comparisons, consider the practicality and benefits of adapting existing scales to other scales.
Consider how, over time, the investigators will use data.
Be prepared to follow up the development of a partnership with education, both in-service and pre-service.
To both sides, this was a landmark project.
Dr. Gavillan encouraged questions from the audience.
Q How will these outcomes be of benefit to the
U.S. TBI field?
A If the research question is unique to patients, researchers or methods, then any or all data collected will be useful to the U.S. TBI rehabilitation field.
QHow did you survive the money problem (not
enough money)? Was a Field Initiated Project from
NIDRR really an appropriate funding
AThe personnel in the project were so committed to the project that they worked as needed in their spare time.
Comment: Higher costs should be anticipated for foreign research by organizers and by funding agencies. NIDRR is asking for comments to its long-range research plan. It is suggested that you make this fact known to the writers of that plan.
Q Were all of the hospitals in the project
Q Could cultural or funding problems be solved
if the projects were not known as rehabilitation problems? Perhaps
if they were called Health problems they would be funded.
A Calling the project by another name would be politicizing it. We found that politicizing is not effective.
A very short presentation was made at this time, by Matilda Leonardi, M.D., of Milan, Italy and Maciel Van der Loos, Ph.D. , of Palo Alto, California, USA in answer to questions regarding funding of research by the European Union (EU) in the Sixth Framework.
The current budget for the Sixth Framework is 17.5 billion Eurodollars. They will be attempting strengthen research by focusing, structuring, and integrating existing and future EU research..
There are seven thematics in the Sixth Framework:
Life sciences, genomics and biotechnology for health.
Information society technologies.
Nanotechnologies and nano-sciences, knowledge-based multifunctional materials and new production processes and devices.
Aeronautics and space.
Food quality and safety.
Sustainable development, global change and ecosystems.
Citizens and governance in a knowledge-based society.
The EU has designed three new research instruments to tackle their research projects:
- Networks of Excellence,
- Integrated Projects, and
- rogrammes implemented jointly.
As stated before, Americans cannot apply for grants from EU, but can be subcontractors or consultants to EU projects. Most EU projects are partnerships of more than one research agencies. For more information on EU research projects, the website reference is http://www.cordis.lu/ist, although much surfing will need to be done to get a comprehensive picture of what EU funds.
DEVELOPING AND MAINTAINING INTERNATIONAL PARTNERSHIPS:
TWENTY YEARS OF REFLECTION ON THE PROCESS AND OUTCOME
Dr. Stone introduced Dr. Ken Nash, Ed.D., Researcher, National Technical Institute for the Deaf, Rochester Institute of Technology (RIT), formerly Director, Office of International Partnerships, RIT, Rochester, New York, USA.
Dr. Nash is, indeed, a member of the elite group of researchers who form the "Travel Club." He has over twenty years of experience with international research and development partnerships, and has had projects with 18 countries. The topics of his international work have ranged from technology transfer to special education and higher education. He has a background in deafness, higher education and technology transfer. For his international work, he has evolved partnerships with Foundations, Non-Governmental Organizations (NGOs), business and industry, advocacy groups, immigrant organizations, the U.S. Government, the European Union and other governmental organizations, universities, colleges and special institutes and departments within higher education.
Dr. Nash started with a personal definition of an International Partnership:
An international partnership is an alluring and distant enterprise, filled with cultural subtleties, laden with bureaucratic requirements, framed by limited resources, and born of high expectations.
That definition can be broken into its meaningful phrases that give a more detailed view of the characteristics-and the challenges-of an international partnership.
An international partnership is an alluring and distant enterprise...
It is easy to be lured by the magic of distance and the promise of travel.
The researcher is attracted to the "distant and unknown." He wants to know it and use it-like a research hypothesis.
The distance and the unknown offer a special mystic to the researcher.
My personal allure for distant research was a desire to know what was behind the Iron Curtain. It was my motivation for getting into international research.
...filled with cultural subtleties...
The first experience with international partnership is a "question of roses." You are courting, idealizing, and spinning lovely scenarios.
Then you wake up with a "morning experience." Who is that next to me? What was I thinking? What have I gotten myself into?
Now the true differences in values-and allure-emerge. The researcher learns to adapt to them and conceives of the long-term experience.
...laden with bureaucratic requirements...
What you don't realize, perhaps, is that the amount of paperwork needed for an international partnership is hard to conceive, and easily overlooked in the early excitement of the partnership.
When a researcher "goes international", the staff work is doubled.
When a researcher "goes international", the need for the Principal Investigator's time is tripled.
What is your Office of Sponsored Research really doing for you? The international project is the acid test.
...framed by limited resources...
What is the first sign of a hidden or unknown concern? It is the phrase: "No problems-don't worry."
The cost estimates are usually inaccurate when working overseas. There is a change in the value of currency, and a change in what currency can buy. And partners often underestimate time and therefore cost.
The expectations of the home institutions must change. New Funding and Administration rates are necessary. New rules must be promulgated to allow for international research funding.
Funding is usually very slow to arrive. The European Union reimbursement system, for example, may take many months-or years-to reimburse Americans who are subcontractors.
...born of high expectation.
Energy is very high when the idea is conceived and the project starts. The real tests occur when you need to sustain the project through
- team turnover
- technology that becomes outdated
- new bosses
- changes in institutional mission
- new directions in key members' lives
- drop in the exchange rate of currency
- operation for 4 to 5 years.
The greatest challenge of the international partner is this: As a Principal Investigator, how do you assure progress and results when often you lack direct authority of the work of others (your partners and even your own team)? This challenge also asks the question: Where does the concept "international" fit into the value system of your institution?
There are some principles for survival and success that I have developed over the years. They have been basic to my long-term professional and project success. But, more, they have been critical to my personal satisfaction and peace of mind.
Principal 1: Selection of Partners
The selection of partners is the most important decision you will make in the international partnership. You will bring to bear complex personal, professional and political processes in making this judgment. Spare nothing to gather enough personal and professional information to make this judgment.
Principal 2: Mutual Benefit
Your project will fail if each partner does not "feel" that they are receiving the benefits they deserve (or need). Determining these benefits is not easy. They can be different-that is o.k. But most importantly: they must be equal. Look for benefits in publications, overhead, travel, recognition, funds, F and A, office space, etc. The process of deciding benefits is psychological. In order to do it, you must let go of your own ego to the extent possible.
Principal 3: Don't Be a Chair with Three Legs
A chair with three legs looks for a fourth for balance and stability. The first part of the project is built on researcher-to-researcher contact. Two legs are built. Then the funder joins the project and there are three legs. What happens after the external ending stops. Where is the stability? Where is the continuity? Where is the self support?
It is vital to plan for all four legs of the chair, including sustainability. Build stakeholders, including the clients, into the project. Look for funding for sustainability or a new research approach. Look at how sustainability can provide mutual benefits. Plan for the future phases of the project-right from the beginning.
As an example, when I worked on Project Access in Hungary, I was funded by the Soros Foundation. Looking for the "fourth chair leg", my Hungarian partners and I were able to recruit many other interested foundations. By the time the first part was completed, I had interest and funds from Lockheed Martin, Xerox, a Hungarian NGO, the Hungarian Chamber of Commerce, the Deaf Community and the Schools for the Deaf, a local and national Advisory Board, and the U.S.-Hungary Society of Rochester. The future of the project was assured.
Principal 4: Participation
Include as stakeholders every level of personnel in your institution, from secretaries in the office to the university Presidents. Include other departments, even the institution alumni and their organizations. Make them "proud" of your institution's accomplishments, particularly for the benefits it is providing for persons with disabilities.
Principle 5: Promises, Promises
Never make promises you cannot keep. Likewise, do not believe all the promises you are given. Reality is your goal and your honor.
Principle 6: Underground is Alive and Well
If you are at all interesting, people will talk about you, and "the word" will travel quickly and internationally. Sometimes "the word" is not accurate or damaging. The best defense for this is an offense: communicate quickly, accurately and openly.
Principle 7: Beware of Mirror Images
It is natural to assume that the "other side" (your international colleague) has similar perspectives, needs and motivations-or resources. Obviously he does not. Finding out the differences is a major challenge.
Principle 8: Remain Results Oriented
The process of international research can appear endless-it can often become a goal in itself. You must find a way to focus on the final objective. In your planning, make outcomes measurable, and work in small steps. Keep yourselves motivated by this strategy. And to keep others motivated, review the proposal and the goals with the team at quarterly meetings; post the progress on the website; include progress in minutes of the meetings. Find ways to renew the "big picture" with the entire research team.
I have pulled together all these thoughts, cautions, and examples into a group of suggestions for daily living as an international research partner. Looking at these in the course of your daily activities, adding your own tips, and looking at other successful researchers will give you a modus operandi that is satisfying and successful.
Tips for Daily Living as an International Research Partner
Keep everyone on the same page.
Balance unequal resources and workloads.
Assure that all countries/institutions receive appropriate and adequate credit.
Measure skill level of the team in the beginning.
Confirm-people, tasks, goals, progress, and confirm again.
Seek out local NGOs and business groups.
Find local leaders who have family connections benefiting from the research.
Recognize U.S. values for communication and follow-up.
Confirm, confirm, confirm.
Recognize strengths and weaknesses of the Embassies, both U.S. and the partner's Embassy.
Confirm, confirm, confirm.
Did I mention that you should always confirm?
CONCLUSION: SUMMING UP OF PRINCIPAL POINTS FROM DAY ONE
Dr. Stone introduced Paul Ackerman, Ph.D., Consultant in international disability research and leadership, Stanley, VA, USA. Dr. Ackerman was asked to sum up the principal points of forming international research partnerships that had been discussed during the day.
In pulling together the advice of the participants in the Forum, Dr. Ackerman said that he was struck by the metaphor of "courtship" posed by the experienced participants. Almost all of them mentioned the importance of personal compatibility with the research partners, and described the methods of working in the international field as one of personal value examination, working toward resolving personal and professional differences, and looking for long-term, sustainable personal and professional relationships.
If the researcher does not have an international partner, there seem to be several phases that he/she goes through to obtain them. (Some are personal searches for the partner, some are online, and some are through marriage brokers- metaphorically speaking.) The international partner builds a hypothesis that needs international testing. This hypothesis becomes a mantra, but it must be changeable to meet the needs of an international partner, and it must have more than one verse, looking to the future (and the four-legged chair described by Dr. Nash).
The next step might be the meeting of the potential international partner. Perhaps this might be an "affair", as ideals, goals, methods, staff and personal management become known and seem desirable to the other. The idea of a continuing partnership must survive this initial titillation.
Networking-introducing your potential partner to the field-then occurs. You execute a search through all the literature, through relevant databases and organization-the people who need to know about your partnership. Finally through encouragement from your colleagues and professional partners, you are ready to make your hypothesis into a working plan and application, and you are ready to define your roles and mutual rewards to each other. This can be not only a plan for action, but also a "pre-nuptial statement." It is important to determine the values each seek from this partnership and to make the obtaining of them equal.
The identification of funding sources is the search for the agency, organization, or philanthropy that will affect your "marriage." Pre-funding counseling will determine the opinion of that official about your chances for success and the value of your proposal. This is one of the most difficult of all the steps, for you may not be as desirable as partners to others as you think you are. You will have to shop to find these funding sources, and you will have to suspend any biases you might have about who you want to fund you. Private sources are as valid as governmental sources. You will develop a statement of your partnership in one page, and you will share it with many; you list not only you and your partner's qualifications, but what you want to do, both short-term and long-term, and what will be your outcomes, methods, multi-disciplinary involvement, research populations, other potential sponsors, expansion needs and plans, development of leaders and dissemination. You will spend 75% of your time doing this activity, but-get used to it-it will not take as much time as when the partnership is consummated, and you will have to give 300% of your time to it.
As you conceptualize your new international partnership, your friends will advise you-well and frequently-that the following criteria should always be built into the partnership:
Think of the partnership as long term. What do you want to do now, and in the next phase (...and when you are both old and gray and watching the "new kids" work with your ideas)?
Distinguish between an individual and an institutional partnership. Both affect each other, but both can work for each other with the right personal and professional planning.
Don't plan for research without planning for training and long-term mentoring. Others-your partner; your staffs; your offspring-need to know how to carry on and even improve on your ideas in the future. Training is the only way to make a lasting memorial to your "family" of research.
Train for independence. If you and your partner are separated, the researchers of either side need to return to their own homes and effect continuance of the project. This is especially true if your partner is from a developing country, where training staff might make them want to come to your house. It is important that they stay in their house and help their colleagues there.
Make sure that local needs in each country are met. Remember, the partnership is not for your benefit, but for those you serve. This is what makes your partnership attractive.
Flexibility is the key to success and stability-in your partnership and in your work. Both you and your partner come from different parts of the world and have different languages, different values and different cultures. Therefore, you will approach research in different ways. Be flexible. Give in to your partner when necessary for his values, but explain yours as well. Remember that there are more than one way to obtain goals; your value as a Principal Investigator is in defining that flexibility. Most partnership/marriage counselors will stress flexibility as the most important personal attribute to the project.
After the formalizing of the partnership, what then? The experienced partners presenting at this Forum all talk about the lifestyle changes necessary to the international research partners. They must accept lifestyles that are now bi-cultural and often bi-lingual. As if this were not enough, they might have to be working on a third new language of research, the International Classification of Function, Disability and Health (ICF). And, by mutual consent, both partners will be encouraged to have "open relationships" with other researchers. The nature of research demands replication and dissemination which involve close relationships.
Above all, the international partners should be prepared to face some difficult times together. There will be "decisions" times, where solutions to language and cultural changes will have to be made. There will be times of frustrations and anger when you find yourself gossiped against, or betrayed by your staff. There will be times of belt-tightening when finances are scarce, slow, or limited. From the beginning of the partnership, the partners must know that "for better or for worse" is a 50:50% proposition.
The results of the partnership will be long lasting and rewarding. You will have a real chance at answering that initial hypothesis (remember it?). You will have some wonderful international research "war stories" for your grandchildren. And you will have some wonderful friends.
And did I mention that you confirm, confirm, confirm?
DAY TWO (July 24, 2003)
METHODOLOGICAL ISSUES IN INTERNATIONAL COMPARISONS: THE INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH (ICF)
The Moderator of this section is Jerome Bickenbach, Ph. D., Professor, Department of Philosophy and Faculties of Law and Medicine, Queens University, Kingston, Ontario, Canada. Dr. Bickenback is one of the North American experts on the International Classification of Functioning, Disability and Health, a system of functional measurement that parallels the International Classification of Disease (ICD). Both the ICF and the ICD are products of the World Health Organization (of the United Nations) which produces standardized measurements that may make population comparisons possible . The International Classification of Impairment, Disability and Handicap (ICIDH) precedes the ICF and is being replaced by it. (At the website: http://www3.who.int/icf/icftemplate.cfm, which is a WHO website, will be found information about the IFO and its collaborating meetings, plus a downloadable book of the IFC or a chance to order it as a book.)
This is the first new model of measurement in ten years. There have been worldwide efforts to conceptualize, devise and execute field trials, and control for cross-cultural and cross-linguistic effects in internal collaborative work. Thus the world now has a universal classification of disability that takes into account cultural and linguistic differences. It is finally possible to make an interactional/person/environmental model.
Why will it be useful? (1) It presents a universal language which supercedes cultural and linguistic filters. (2) It can provide a linkage between care and multiple disabilities. (3) It is an international tool-a function of a human condition.
Dr. Bickenbach then introduced the first two speakers:
Rune Simeonsson, Ph.D., M.S.P.H., Professor of Education, Research Professor of Psychology, Frank Porter Graham Child Development Institute, University of North Carolina, Chapel Hill, North Carolina, USA, and
Matilde Leonardi, M.D., Pediatric Neurologist, Chair, International Scientific Research and Disability Project/World Health Organization (WHO); Italian National Neurological Institute Carlo Besta, Milan, Italy.
Dr. Simeonsson began the presentation with a statement of the purpose of the presentation:
to present an overview of the International Classification of Functioning, Disability and Health-the ICF;
to describe activities to develop a version of the ICF for children and youth; and
to identify implications for international research related to its use to document child health, functioning and disability.
The International Classification of Disease (ICD) classifies diseases. The ICF classifies health. Together the two provide researchers with exceptionally broad and yet accurate tools to understand the health of a population and how the individual and his/her environment interact to hinder or promote a life that should be lived to its fullest potential.
The Content of an ICF measurement must be understood because these measurements may become the research measurements of the future--the measurements that are culture free and provide accurate comparisons between subjects or populations. The universe of this content includes all health-related experiences. The scope of the ICF is the "description" of functioning and disablement. The coverage of the content is inclusive, and views disablement as a universal human experience. The units of classification include "attributes/experiences" of persons and "situations/circumstances" in which persons find themselves; persons are not the units of classification, their functions are. The measurements are organized in Body Structures and Functions, Activities, and Participation; each of these headings are conceived of as distinct but parallel dimensions.
To be more specific, Body Structures and Functions, are both one-digit level classifications and contain the following subheadings (ICF 2001).
- Voice, speech
- Cardiovascular, haematological, immunological and respiratory
- Digestive, metabolic, endocrine
- Genitourinary and reproductive
- Neuromusculoskeletal and movement-related functions
- Skin and related structures
- Nervous system
- Eye, ear and related structures
- Voice and speech structures
- Cardiovascular, immunological and respiratory structures
- Digestive, metabolism and endocrine
- Movement-related structures
- Skin and related structures
Activities/Participation are also one-digit level classifications:
- Learning and applying knowledge
- General tasks and demands
- Domestic life
- Interpersonal interactions and relationships
- Major life areas
- Community, social and civic life
Environmental Factors are one-digit level classifications, as follows:
- Products and technology
- Natural environment
- Support and relationships
- Services, systems and policies
Those who designed the ICF recognized a need for a children's version. For children, the manifestations of disability are different in nature, intensity and consequences than for adults. The main volume of the ICF lacked details regarding these differences. It is also recognized that the documentation of disability and risk factors for disability in childhood is crucial for prevention and early intervention efforts. Finally, a version of the ICF for children and youth can facilitate continuity of documentation of disability in transitions from child to adult services.
In the development of the ICF version for children and youth, then, the descriptions were modified or expanded, new content was assigned to unused codes, inclusion/exclusions criteria modified and/or expanded, and qualifiers were modified to encompass the extent or magnitude of problems of a developmental nature. Examples of this development are given:
...new content assigned to unused codes:
- D 120 Other purposeful sensing--Using the
body's other basic senses intentionally to experience stimuli, such
as touching and feeling textures, tasting sweets or smelling
- d 1200 Mouthing
- d 1201 Touching
- d 1202 Smelling
- d 1203 Tasting
...inclusion criteria were modified...
- d 4402 Manipulating
Using fingers and hands to exert control over, direct or guide something, such as when handling coins or other small objects for example strings and blocks,
Inclusions: Neat pincer grasp to pick up small objects.
- d 4403 Releasing
Using fingers and hands to let go or set free something so that it falls or changes position, such as when dropping an item of clothing or a toy.
- Coordination of fine hand use
Cutting with scissors, holding crayons, using a pencil to write.
- Fine hand use, other specified.
...qualifiers were modified to encompass the extent or magnitude of problems of a developmental nature...
For Body Functions and Structures
"Generic qualifier with the negative scale used to indicate the extent or magnitude of an impairment"
"Generic qualifier with the negative scale used to indicate the extent of magnitude of a problem, deviation or delay, whether permanent or temporary"
The planning sequence to develop the children's ICF parallels the development of other parts of the ICF. Planning groups from different countries meet and give input. A first draft is prepared and subjected to field trials (which review the content and determine clinical utility). A second draft is prepared and submitted to field trials. A final draft is the revision of all drafts and conclusions, and will be submitted to the World Health Organization in October of 2004.
Documentation of childhood disablement is important both in terms of prevention and early intervention efforts and for comparisons of findings from research and practice. The nature of functioning unique to childhood and adolescence presents special challenges for measurement of the manifestations of disability in children. Variability in terminology and estimates of disability complicate the comparison and interpretation of data on the nature and scope of childhood disability. A standardized conceptual and taxonomic framework is needed to allow comparison of findings across countries. A universal language is also needed to develop surveillance and screening tools that can be used readily with primary caregivers and other key respondents.
Italy is a country whose scientists take the ICF seriously and are working to adapt the ICF to its needs. Dr. Leonardi is responsible for the transition, working through the Italian lead agency, the Italian National Neurological Institute in Milan. As such, the Italian experience offers a global model for transition from one research model to another.
Some of the objections to the change in Italy were emotional. Persons with Disabilities, their families, their caregivers and their researchers had to move from fear (of change) to enthusiasm. Conceptually, people had to transition from the concept of "handicapped" to "A Person with a Disability" (and change many years of conceptualizing the meaning of an "impairment"). Beyond the individual paradigm shifts, there had to be a national consciousness of disability as a functional disablement. Much of this shift was helped by the European Year of Disability events that helped people perceive disability as just part of the continuum of normalcy.
From an individual standpoint, certain tools had to be developed. A training program in the use of ICF was developed. A national website provided information and technical help to scientists wishing to use the ICF. A technical and scientific support program was set up in Milan. Even the Italian government assisted in the transition when they passed bills in Parliament basing the definition of disability on ICF terminology.
The research community underwent a Renaissance. In the opening ceremonies of the European Year of the Disabled, a special session on research and research methodology was included. The ICF terminology was used to create specifications for Information Technology standards of research, e-accessibility, and biomedical and assistive technology devices. The social security programs of the Italian government began to see how the ICF terminology could be used to determine eligibility and the organization of social and service-delivery systems began using a bio-psychosocial model.
Yes, there were problems. There was a lack of common languages or dialects interfering with understanding and sometimes with the validity of measurements. There was not an unlimited budget, and some wished-for innovations had to remain only wishes. And finally, the new program had to go against more that 20 years of inclusion and a philosophy of not attaching measurements to children.
The transition is apparently working, but the final conclusions are not yet in as to its universal applicability for other countries.
Questions were encouraged by Dr. Bickenbach.
Q Can I use the ICF for work with
children with TBI? Can I train teachers for
TBI children in ICF? How does
ICF help in measuring "emerging" TBI in
children? Is child classification developed in a way that could be
used to get future measurements?
A The use of ICF for the classification and treatment of TBI is, indeed, possible. The answers to this question are, however, too long and complex to state right now. Dr. Leonardi and Dr. Simeonsson invite questions and comments about the use of the ICF for children. Dr. Simeonsson's contact information is: telephone: 919-966-6634; email: email@example.com. Dr. Leonardi's contact information is: telephone: +39 02 2394; email is: firstname.lastname@example.org.
Dr. Bickenbach then introduced Dianne Caulfield, B.Sc., P & OT., MBA, Consultant in Classifications, Standards Department, Canadian Institute for Health Information, Ottawa, Ontario, Canada.
In the late 1990s, the Canadian Institute for Health Information (CIHI) was working on the international revision process of ICIDH-2 (the International Classification of Impairment, Disability and Handicap-2) in collaboration with the North American Collaborating Center (NACC) and the World Health Organization (WHO). Since this revised classification was officially launched by WHO as the International Classification of Functioning, Disability and Health (ICF), CIHI has been monitoring the implementation and application of ICF across Canada and North America.
The North American Collaborating Center (NACC) is the instrument for this monitoring process. (The website for the NACC is: http://www.cdc.gov/nchs/about/otheract/icd9/nacc.htm. This website, however, is primarily descriptive of the institutions and agencies which form the NACC. For more active and updated materials, visit the websites of NCHS and CIHI.) A collaborating center of the WHO, the NACC is comprised of efforts by both Canada's CIHI and the U.S. National Center for Health Statistics (NCHS), a unit of the Centers for Disease Control (CDC). The NACC is charged with implementing the ICF, the ICD and other derived and related classifications (such as the Children's ICF and the Mental Health ICF) in North America.
The focus of the NCAA is raising awareness of the ICF to researchers in North America. It does this through disseminating and networking, particularly through the NACC-ICF Clearinghouse. The NCAA also seeks to develop research agendas to further develop and utilize the ICF. Training is another focus of the NACC. Coding guidelines also occupies a great deal of its effort.
The NCAA provides two levels of direct services and support to researchers and the development of the ICF. At a primary level, it publishes a monthly newsletter, both online and offline. Any interested researchers may receive this communication vehicle. At the secondary level, there are several projects: the identification and typology of ICF users in North America; marketing; training and technical assistance; and ICF Forum support.
The NACC has developed a research agenda to make the ICF more useable and relevant to researchers. Current topics are:
Who should report functional status-patient, provider or both?
How often should data be collected?
Should functional status be measured with or without assistive devices/environmental factors?
How should consumers be involved?
How can the value of the ICF be demonstrated in relation to costs of collection?
What are the benefits of recording information?
The NACC hosts annual Forums to compare research, marketing, training programs, and future agendas. The last Forum was held in St. Louis, MO, USA, in June of 2003. At that time, Primary, Secondary and Tertiary priorities were established for the NCAA. They are as follows:
- Implementation Strategy
- Coding, Activities/Participation, Qualifiers
- Measurement-survey, clinical, administrative
- Mapping and use of ICD and ICF together
- WHO-FIC in a box
- Derived and related classifications
- Subjective aspects of ICF
The Tenth Annual meeting will be held in June of 2004 in Halifax, Nova Scotia, Canada. (Summaries of these meetings are usually available online at NCAA websites. )
Researchers can receive topical and updated information regularly from the NCAA newsletter. They can participate in online discussions through and NCAA listserve group. And they can obtain information about services and research from inquiries to the center or to the experts they highlight. Truly the NCAA is the hub of the work on the ICF in North America.
Dr. Bickenbach then introduced Dr. Gerry Hendershot, Ph.D., Consultant on Disability and Health Statistics, University Park, Maryland, USA.
Disability International Standard Tabulations (DISTab or DISTAB) was established to improve the international comparability of disability statistics from national surveys. Its plan was to use UN-recommended standard tables and reporting categories, back-code survey data to ICF categories, and analyze the results in roundtable meetings with all members. The process involved monthly phone Forums and annual face-to-face meetings. The results were/are to be distributed as presentations at professional meetings and publications (e.g., "Disability and Rehabilitation").
The ICF was picked as the standard nomenclature because it had been approved by the World Health Assembly, because it was available in six official languages, and because it was searchable on the Web and CD versions. The task, however, was complex. It required recoding from a health/disease orientation, (ICIDH) to a new paradigm of measurement, the ICF.
The countries who submitted their surveys and statistics to DISTAB for comparisons, were: Canada, France, The Netherlands, South Africa and the United States. The U.N. disability categories chosen for comparison and back-coding were:
- Seeing - even with glasses
- Hearing - even with aids
- Speaking - includes talking
- Moving - mobility
- Body movement - includes reaching, crouching, kneeling
- Gripping - holding, includes using fingers to grip objects
- Learning - including intellectual difficulties, retardation
- Behavioral - includes psychological, emotional
- Personal care - includes bathing, dressing, feeding
In order to get comparability, DISTAB had to insert qualifiers in some of the measurements, as well as reword the measurements to account for national and language differences. Take, for example b230. Hearing Functions:
Sensory functions relating to sensing the presence of
sounds and discriminating the location, pitch, loudness and quality
Inclusions: function of hearing, auditory discrimination, localization of sound source, lateralization of sound, speech discrimination, and impairments such as deafness, hearing impairment and hearing loss.
In many surveys, measurements had to be taken from sources with questionable duplication: For example, in the Netherlands Health Interview Survey, a question on hearing was phrased: "Are you able to have a conversation with another person (with hearing aid if necessary)? Are you able to follow a conversation in a group of three persons or more (with hearing aid if necessary)?
Nonetheless, the results of the comparisons show remarkable correlation, thus showing comparability and at least face validity. A manual on back coding and comparison has been written and is available from Dr. Paul Placek of the NCHS. More countries wish to join DISTAB, and the movement for a potentially universal measurement (ICF) has been launched.
The final speakers of the session were introduced by Dr. Bickenbach. Their presentation was entitled: Case Study: American Institutes of Research (AIR) and the Brazilian Academy of Science in a Study of Developmental Disabilities and Group Homes. The speakers were:
Maurice McInerny, Ph.D., Managing Director, American Institutes for Research, Washington, DC, and
Cassia Maria Buchalla, M.D., Ph.D., Assessor, World Health Organization (WHO), Collaborating Center for the Family of International Classifications in Portuguese, School of Public Health, University of Sao Paulo, Brazil.
The Academia Brasileira de Ciências is currently collaborating with the American Institutes for Research, the Melwood Training Center and the WHO Collaborating Center for the Family of International Classifications (WHO-FIC) on a collaborative research project between Brazil and the U.S. This project is based on the hypothesis that persons with cognitive disabilities can be significantly helped if the staff who work with them have been extensively trained, including international staff exchange. The hypothesis is particularly relevant to the populations being measured in this study, persons with cognitive disabilities, who are clients of private habilitation programs with similar philosophies of inclusion and self choice, but who exist in different cultural milieu (Brazil vs. the U.S.).
The project objectives are as follows:
To design social-entrepreneurial strategies for delivering habilitation services in Brazil
To provide human resources for delivering habiliation services in Brazil and the United States
To measure gains in functional skills among participating Brazilians and Americans with disabilities
To analyze the costs and benefits of replicating the program in Brazil and the United States.
There are three components to the projects. Component 1 develops and tests social entrepreneurial habilitation strategies in Brazil and the United States. Component 2 uses a resource allocation approach to measuring program expenditures and benefits. Of importance to this Forum, however, is component 3 - to use the ICF to measure the health and disability of Brazilians and Americans with disabilities.
To utilize the Portuguese ICF, the project depends upon Dr. Buchalla and colleagues of the WHO-FIC in Sao Paulo. This Collaboration Center is currently translating and adapting the ICF into Portuguese, training and providing technical supervision and support to Portuguese-speaking ICF users, and preparing and disseminating reports on the new classification system. The Academy/AIR/Melwood project fits their specifications for assistance, both to the project and to themselves, for they are looking to implement strategies such as: 1) using the ICF in small, specific settings for health services, 2) testing the ICF, including different applications of the checklist, 3) developing staff training materials and train the users; and 4) gradually expanding the use of the instrument with different populations of persons with disabilities.
Specifically, there are two key goals for the collaboration of this center with ABC-AIR/Melwood project:
To help establish a common language for describing and measuring health and disabilities across different cultures, sectors and disciplines; and
To compare the cross-cultural applicability and comparability of the ICF in Brazil and the United States.
The project participants have already learned several lessons about international collaboration:
Be patient in forming a network of international partners.
Create short-term visibility for the project.
Acknowledge and accommodate cultural differences when implementing the project.
Establish long-range goals that leverage the unique capabilities of key partners in the collaborative effort.
ICF codes may have to be developed for each target population.
The partners of this project will be seeking funds from agencies that also believe in comparative research using the ICF, and also look for relevant and productive social-behavioral research.
CONCLUSIONS, SUMMING UP OF PRINCIPAL POINTS
Dr. Stone introduced two people to summarize the points of the day. The first of these was David Keer, Program Specialist, Research Sciences Division, Co-Chair, Interagency Subcommittee on Disability, National Institute on Disability and Rehabilitation Research, (NIDRR), Washington, DC, USA. Mr. Keer summarized his conclusions on the ICF presentations.
The ICF presentations were not complete. They were only enough to whet your appetite for more. They laid a feast in front of you that is currently being savored by on available to you as potential users of the ICF. I draw your attention, particularly to the offerings of the NCAA, in which it is possible to receive progress reports, involve yourself in discussion groups, join your colleagues for stimulating international meetings, and become an expert ICF user yourself. But there are other sources of information as well. The Interagency Committee on Disability Research of the U.S. Government held a day-long symposium on the administration of ICF research within government research plans last December. (Copies of this workshop may be requested from Robert Jaeger, the Executive Secretary of the Interagency Committee on Disability Resarch.) The minutes and summaries of the annual meetings are posted on the CIHI and the NACC websites, and other ICF-related resources are available from CIRRIE. Although there is some instruction about the ICF in colleges and university, the process of educating oneself about ICF is self-directed. It is a journey worth the price.
You have also heard some of the ICF's foremost developers here today. Their names, titles, addresses, telephone numbers and email addresses are listed in your programs and will be in the publications of this Forum. To my knowledge, all would be willing to assist you in any particular questions you might have on the ICF and its application. I invite you to communicate with them.
As you can see, the ICF is not an American instrument. It is worldwide. It speaks a global language with ever more accuracy from year to year. I encourage you to be a part of its development, like the speakers you heard here today are a part of its development. Of particular interest was the presentation on the Brazil Academy of Sciences, AIR and Melwood, because that represents what mainstream researchers will be using as the ICF becomes more reliable and valid. Truly, in the future, we will be able to conduct research and then to compare it among world populations.
My position in NIDRR makes me proud to be with a research unit of the U.S. Government that is seeking to include ICF activities in its new priorities. The U.S. government does not aim to be first in large-scale utilization of the ICF. It aims to be the most comprehensive. It seeks your help in being the global future of research.
The last speaker was Dr. Ackerman, Consultant in International Disability and Leadership, former Fullbright Educational Specialist, Stanley, VA, USA.
There are many action steps that have been proposed this morning. If you are sold on the use of the ICF, and I think from the questions, that you are, then here is your "to do" list.
Make contact with Paul Placek, David Keer or the NACC to get on mailing lists, get Forum reports that might not yet be out, or to ask advice on your particular interests.
Get the ICF Manual. Either go to the WHO online, the WHO bookstore, or the NACC to purchase it. You can use it online for searching, but it's easier to carry around the "little red book."
Continue learning about the ICF. Perhaps you can acquire a mentor.
Consult the ICF page on the CIRRIE site for links to the ICF resources (http://cirrie.buffalo.edu/icf/).
Consider back-coding some of your research or the results of others. That will give you comparison data and teach you how to code.
When designing research, now you can consider comparative research rather than survey or classic intervening variable research. Comparative research will be welcomed by NIDRR and other agencies that have been more traditionally survey research oriented.
Why is ICF and ICF-related research important to you as a researcher?
With ICF measures and the methods it allows, you will be able to seek and get more comparative data. This will make you more attractive to collaborators who want to know the results of comparisons from their side of the project.
With ICF measures you will get more perspectives. You can analyze larger numbers of data, or many different types of functions, environments, and conditions. You will receive new statistical and psychosocial insights.
True comparisons are rare in the research literature of today. You have a chance to pioneer that field, and to mine it for its methodological purity. International researchers will thank you for that.
Finally, the ICF opens up a medium for talking and sharing of research results. It presents a potentially common language.
This Forum has made the point that international partnerships in research are desirable and rich. They can be made easier, more relevant and richer with the use of the ICF.
Dr. Stone concluded the Forum by thanking the relevant staff who worked so diligently on it, and particular thanks went to the co-sponsors of the Forum:
The National Institute on Disability and Rehabilitation Research, U.S. Department of Education
The Fogarty International Center/NIH
The National Center for Medical Rehabilitation Research/NIH
The U.S. Department of State
The Pan-American Health Organization
He assured the audience and speakers that proceedings of the Forum would be available.