White House/VA Conference Emerging Technologies in Support of the New Freedom Initiative: Promoting Opportunities for People with Disabilities October 13-14, 2004

"The budget for assistive technology research is quite small compared to the overall R&D budget of the country. "—Michael Weinrich

The Research and Technology Development breakout report was presented by the Michael Weinrich, MD1, Director of the National Center for Rehabilitation Research in the National Institute of Child Health and Human Development at the National Institutes of Health (NIH).

Our last group was on research and development. I chaired that, and Bob Jaeger was kind enough to act as the facilitator. We had a very diverse group. Our group did, however, have quite a number of academics in it. So, being good academics, we of course didn’t decide anything. What we have is a whole set of what we thought were opportunities and roadblocks, and a few recommendations. I’ll just quickly run through them.

Difficulties in research and technology development Lack of resources. Not surprisingly, adequate resources for research are scarce. The budget for assistive technology (AT) research is quite small compared to the overall research and development (R&D) budget of the country. A lack of consensus exists on what should be done, given the problem in allocating scarce resources. Information, please. There’s a problem with awareness and affordability of what really is available. So again, we need to make information available to individuals with disabilities. Also, ATs are useless if a disabled person does not have the means to pay for them. We also see a dearth of awareness from both developers and deployers of technology. And we need better information from end users. That was brought up in several sessions. Again, information from R&D efforts doesn’t get to the ultimate users of technology, and there’s a problem in dissemination. We get the sense that translation research in AT may lag behind other translational efforts. Technology development is not sexy. Another impediment is peer reviewers at funding agencies may not have such a favorable view of technology development as opposed to hypothesis-driven research. It’s a difficult job, selling the need for long-term research in disability to the general public, many of whom believe they will never become disabled. Some university faculty typically prefers to do basic research rather than applied development. This has to do with university culture and reward systems. Where’s the village? Interdisciplinary teams in the academic world, and interagency programs in the government world. We must streamline and integrate the process from basic discovery through to development. Inferior research methodologies. We need better or validated research methodologies for small sample, low-incidence conditions in populations. Again, there’s a problem of prejudice and negative opinion regarding individuals with disabilities. Humanitarian exceptions are not promoted. We need better enforcement and publication of the humanitarian device exception issued by FDA that allows development of ATs with exemption from some of the regulatory rules.

Strategies for research and technology development Explore the world of universal design. Research applications of universal design, with information and education, should also be explored, with an emphasis on the importance of early intervention. Get there early. Considerable discussion revolved around adequate resources for research, and more research needed for diagnosis and early detection and prevention of disabilities. Combine research whenever possible. We detect an opportunity for combining research in regeneration and functional electrical stimulation (FES) for neurorestoration. Scientists need to find better ways of optimizing the number of electrodes needed for various bioelectric interface projects, such as retinal prostheses. Draw better distinctions. Helping disability researchers draw better distinctions between basic, applied, and clinical research would be of great benefit to all. Compare injury outcomes. We discussed the identification of genetics and proteomics, the issue of natural variation between people who suffer the same injury. Some people recover well. Other people don’t recover well. Some of this almost certainly is due to genetics. We need to understand how to turn people who would otherwise have a poor recovery into good recoverers. Develop appropriate outcome measures. A brief discussion centered on appropriate outcome measures for AT. For example, if you look at some survey forms, they ask you how far you can walk. But they don’t specify what kind of assistance you might need in doing that. Revise common Medicare diagnoses. We also talked about addressing the most common diagnoses that cause disability. For example, we don´t normally think of congestive heart failure as a major cause of disability, but in fact it’s the most common diagnosis in Medicare causing hospitalization. Immediately, when we brought this up, someone pointed out that miniature pumps to assist the heart are becoming available and could be a major improvement in the lives of this very significant population of individuals with a severe disability.

Solutions for research and technology development Create a DARPA. Our first solution was to create a Defense Advance Research Projects Agency (DARPA) for disabilities, to provide the "mezzanine" funding, middle-level funding that other people at this conference have talked about. This is yet another option; instead of a Fannie Mae option, a DARPA-like option could be instituted to pick out promising technologies and fund them under a contract. Make cognitive and psychiatric issues a priority. Cognitive and psychiatric problems should be a research priority, with research beginning on patients as young as possible. An example of this would be developing research applications of AT for individuals coping with stress who have communication deficits, i.e., cannot verbalize what problems stress is causing. Establish grand challenges. We suggest new initiatives to create interdisciplinary teams at universities with stable, long-term support. For example, what about grand challenge workshops in disability and technology research? The idea is to really publicize grand challenges for rehabilitation and AT that can serve as moon-shot kind of programs, programs that galvanize the national will to put the funding and resources necessary to solve these problems. Broaden AT applications and training. We must investigate larger applications of AT. We’ve heard this from several groups, the importance of broadening the market and the appeal of assistive technology approaches so that they’re more usable by the general population. Training for everyday providers of AT on state-of-the-art developments must become a priority. Combine therapies. A lot of discussion concentrated on the opportunities of combined therapies—microfluidics, advanced sensors, and simulation. And this included research on tissue engineering, especially the hybrid materials such as biotissue, mechanical interfaces, and nanotechnology and hybrid materials. Researchers could focus on practical applications towards variable geometry sockets for amputees, as well as research on bladder and bowel control. Increase TBI and PTSD research. We talked about disabilities resulting from traumatic brain injury (TBI), especially post-traumatic stress disorder (PTSD, and long-term endocrine disorders. This brought up the issue of the physiology of blast injuries. As many of you know, body armor is now saving many soldiers who would previously have died, so they’re exposed to much higher blast forces. We need to understand a lot more about what these blasts do, especially to the nervous system, and how to help people recover from these kinds of injuries. Build a better battery. Improved battery technologies are necessary for implanted devices, prosthetics, and wheelchair/mobility devices we’re going to be bringing to the marketplace—perhaps using MEMS technology or sensor technology. Databases of what we actually have available in AT must be improved and expanded.

1Michael Weinrich, MD, is Director of the National Center for Rehabilitation Research in the National Institute of Child Health and Human Development at the National Institutes of Health(NIH). He graduated magna cum laude from Harvard College and received his medical degree from Harvard Medical School. Dr. Weinrich trained in medicine and neurology at the University of Chicago Hospitals and Clinics and in neurophysiology at the National Institutes of Health. While on the faculty at Stanford University, he developed a computer system to help stroke patients recover speech and language. He was recruited to the University of Maryland to develop a rehabilitation program. He served on the Maryland faculty as Professor of Neurology and Medical Director of the University of Maryland Rehabilitation System until January 2000 when he moved to the NIH. He was awarded the 1998-99 Health Policy Fellowship by the American Academy of Neurology and American Neurological Association and worked in Congressman Ben Cardin’s office in Washington, D.C. on health legislation. Return to report

RESEARCH AND DEVELOPMENT TEAM

Dinah Cohen, Director Department of Defense Computer/Electronic Accommodations Program	Patrick Crago, PhD, Research Scientist Pittsburgh VAMC, Department of Veterans Affairs	Gilbert Devey, Program Director, Biomedical Engineering National Science Foundation, National Institutes of Health (NIH)
Eileen Elias, MEd, Deputy Director Office on Disability, U.S. Department of Health and Human Services (HHS)	Robert Fletcher, DSW, ACSW, Founder and CEO National Association for the Dually Diagnosed	Karen Flippo, Executive Director National Association of Councils on Developmental Disabilities
Margaret Giannini, MD, Director Office of Disability, Department of Health and Human Services	Cheryl Bates-Harris, Disability Advocacy Specialist National Association of Protection & Advocacy Systems (NAPAS)	Florence Haseltine, PhD, MD, Director Center for Population Research, National Institutes of Health (NIH)
William Herman, Director, Physical Sciences Division Food and Drug Administration (FDA)	Robert Jaeger, PhD,* Director, Interagency and International Affairs National Institute on Disability and Rehabilitation Research (NIDRR)	Vernon Lin, MD Chief, Spinal Cord Injury Service VA Long Beach Healthcare System
Wentai Liu, PhD, Research Scientist University of California, Santa Cruz	Toby Long, PhD, PT, Director, Division of Physical Therapy Georgetown University	Irene McEwen, PhD, PT, Director, Department of Rehabilitation Sciences University of Oklahoma Health Sciences Center
Celia Merzbacher, Project Director, Technology Transfer Office National Science and Technology Council	Emily Munson, Intern National Council on Disability	Vivian Owusu, Staff member National Institute on Disability and Rehabilitation Research (NIDRR)
P. Hunter Peckham, PhD, Director Cleveland Functional Electrical Stimulation (FES) Center and the VA Center of Excellence in FES, Cleveland VAMC	Roger Smith, PhD, Professor, Department of Occupational Therapy University of Wisconsin-Milwaukee	Lena Stone, Program Analyst President’s Committee for People with Intellectual Disabilities
Rick Weidman, Director of Government Relations Vietnam Veterans of America	Michael Weinrich , MD,† Director National Center of Medical Rehabilitation Research, National Institutes of Health (NIH)	Celia Witten, PhD, MD, Director, Division of General, Restorative and Neurological Devices Food and Drug Administration (FDA)
	Stacie Yuhasz, PhD, Editor Journal of Rehabilitation Research & Development

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