NIDCD Workshop on Exploring International Collaborative Research in Deafness & Other Communication Disorders
September 23, 2008
Bethesda, MD, USA
The National Institute on Deafness and Other Communication Disorders (NIDCD) held a workshop on Tuesday, September 23, 2008, at the campus of the National Institutes of Health (NIH) to explore international research activities at the NIH and determine any future steps for NIDCD in this area. Like other NIH Institutes and Centers, NIDCD conducts and supports research in the U.S. and abroad. The workshop was designed to showcase the breadth of activities possible at the NIH within the various international programs of a select group of Institutes and Centers. The workshop participants consisted of a diverse group of stakeholders: funded NIDCD voice and speech grantees, representatives of a variety of professional associations, NIDCD staff, and invited NIH staff. The American Academy of Audiology (AAA), the American Academy of Otolaryngology-Head and Neck Surgery (AAO-HNS) and the American Speech-Language-Hearing Association (ASHA) were invited to send representatives. The workshop was developed and chaired by Dr. Lana Shekim, program director for the NIDCD voice and speech program and NIDCD representative to the NIH International Representatives committee of the NIH Fogarty International Center.
The workshop convened at 8:45 a.m., when Dr. Judith Cooper, deputy director of NIDCD, welcomed the group and highlighted the importance of global health in the current world climate of the 21st century.
Dr. Michael Johnson, deputy director of the Fogarty International Center (FIC), gave the opening presentation and set the tone for the workshop by presenting on directions in global health. His presentation indicated that public health programs and especially global health programs are experiencing an increase in enrollment in the U.S. He also stressed the shift in global health from infectious diseases to chronic illnesses such as cancer and cardiovascular diseases. The top three conditions projected by the Disease Control Priorities Project 2 (DCPP2) to have the highest Disability-Adjusted Life Years (DALYs) for 2020 were ischemic heart disease, depression, and road traffic accidents. Obesity is a challenge worldwide, and not only for high income countries.
Dr. Johnson also presented data from the World Health Organization (WHO) about the global burden of disorders such as hearing impairment. Surveys conducted to date show that up to 7.8 percent of a population (such as in northern Vietnam) may have hearing impairment. The relationship between risk factors and possible interventions was also presented. Dr. Johnson also showcased the example of an Israeli-Palestinian scientific collaboration on the genetics of hearing loss, funded by a Fogarty International Research Collaborative Award (FIRCA). Existing FIC programs were highlighted as possible models for NIDCD-FIC partnership.
Serge Resnikoff, M.D., Ph.D., spoke next. Dr. Resnikoff directs the Office of the Prevention of Deafness and Blindness at the World Health Organization (WHO) in Geneva. He pointed out that of the communication disorders, currently only deafness is noted at WHO. Other communication disorders are attended to only within the context of related conditions, e.g., neurologic, mental, or accident-related. Dr. Resnikoff described what WHO is and is not and clarified how WHO conducts its mission in partnership with other governmental and nongovernmental entities. He indicated that WHO is a knowledge management organization and highlighted its core functions. Dr. Resnikoff said that current WHO activities on hearing focus on prevention and assessment rather than rehabilitation. He presented some of the data that has been collected by WHO and ended by naming continued challenges/opportunities: expanding the scope at WHO to all communication disorders, collecting data in order to better advocate for prevention and reduction in global burden of disease, and increasing partnerships. He highlighted the WHO-NEI (National Eye Institute) partnership as a working model for the past 20 years.
Dr. Thomas Friedman, chief of NIDCD's Laboratory of Molecular Genetics, has had extensive international collaborative experience. Dr. Friedman presented his reflections and best practice guidelines for conducting international research. He has conducted research in Bali, Canada, Germany, India, Indonesia, Iran, Israel, Pakistan, and the UK. He provided a list of general guidelines that apply to all research collaborations with emphasis to cross-cultural effort at frequent communication. He stressed the utility of starting small, clarifying all elements, having realistic goals, articulating plans, sharing resources, mutual respect, Institutional Review Boards, human subjects protection, flexibility, transparency, student training, and respect of local traditions.
Dr. Joe Harford, Director of the Office of International Affairs (OIA) at the National Cancer Institute (NCI) spoke about the breadth of the program at NCI. He highlighted trends in cancer worldwide and contrasted developed countries with less developed countries. He gave examples of the many workshops organized and supported by NCI. Dr. Harford described the Middle East Cancer Consortium (MECC) as well as the short term training programs sponsored by NCI.
The afternoon session began with a presentation from Dr. Reidar Lie of the Department of Bioethics of the NIH Clinical Center (CC). His presentation addressed the bioethical considerations when conducting international research. Of special concern are different regulations, scientific judgments, and cultural traditions as well as economic differences. He gave a number of examples of international studies to highlight the necessary considerations.
The next segment of the afternoon showcased a panel of representatives from a number of small to mid-size NIH Institutes that share scientific interests with NIDCD. Dr. Mary Frances Cotch of the National Eye Institute (NEI), Dr. Danuta Krotoski of the National Institute of Child Health and Human Development (NICHD), Dr. Yuan Liu of the National Institute of Neurologic Diseases and Stroke (NINDS), and Dr. Thomas Lehner of the National Institute of Mental Health (NIMH) presented highlights of the international programs at their respective Institutes. The final presentation of the day was from Dr. Karl Western, who highlighted the Global Research program of the National Institute of Allergy and Infectious Diseases (NIAID), one of the largest international research efforts at NIH.
The workshop ended with discussion among the participants about possible next steps. NIDCD-funded investigators voiced support for international collaborative research and stressed the need to educate researchers and reviewers about the opportunities for scientific discovery through collaborative international research. NIDCD DSP staff will discuss the content of the workshop and draft plans as needed. Dr. Lana Shekim thanked all present for their attention and participation throughout the day. The workshop adjourned at 4 p.m.
Disease Control Priorities Project (DCPP)
Institute of Medicine project on the U.S. Commitment to Global Health