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A paradigm for multidisciplinary disaster research: the oklahoma city experience
The Journal of Emergency Medicine, Vol. 16, No. 4, pp. 621– 630, 1998 Copyright © 1998 Elsevier Science Inc. Printed in the USA. All rights reserved 0736-4679/98 $19.00 1 .00
PII S0736-4679(98)00042-0
Selected Topics: Disaster Medicine
A PARADIGM FOR MULTIDISCIPLINARY DISASTER RESEARCH: THE OKLAHOMA CITY EXPERIENCE Gary Quick,
MD
Department of Surgery, Section of Emergency Medicine, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma Reprint Address: Gary Quick, MD, Section of Emergency Medicine, University of Oklahoma Health Sciences Center, PO Box 26307, Oklahoma City, OK 73126
e Abstract—The objective of this article is to describe the creation and operation of a multidisciplinary group to examine the Oklahoma City (OKC) bombing. The OKC bombing presented an opportunity to study a major disaster within 2 days of the incident. The Disaster Health Studies Group (DHSG) was created to facilitate this effort. The creation, organization, and operation of the DHSG is outlined. In addition the mission statement, participants, communications, political empowerment, data preservation and collection, data ownership, patient rights, threats to the DHSG, media interactions, funding, the institutional review board process, and results reporting will be detailed. The 22 projects of the DHSG are listed. In conclusion, four main findings are examined: 1) A multidisciplinary disaster study group is feasible and can be rapidly organized; 2) certain organizations and institutions form a core group for facilitation of the research effort; 3) specific issues must be addressed in order for the group to succeed; and 4) the group leader should have disaster expertise and be committed to the multidisciplinary process. © 1998 Elsevier Science Inc.
of the disaster victims. Most projects are carried out by a limited number of investigators examining a relatively small portion of the entire scenario of the disaster (1). Therefore, most disaster research reports are weakened by data loss due to time-sensitive data decay and the limited perspective of the research team. Health management during and after a disaster is, in its essence, a multidisciplinary venture marked by rapid assessment of the magnitude of health needs, management of mass casualties, coordination of relief activities, epidemiologic surveillance, disease control, environmental health management, food and nutrition, the management of health relief supplies, public settlements, communication and transport, management of relief assistance, and normalization of post-disaster lifestyle (2). The science of disaster medicine is founded in multidisciplinary medical skills that embrace the therapeutic and the preventive spectrum of health care (3). Recent disaster research literature has included a limited number of areas of multidisciplinary disaster research bringing together the strength and skill of several disciplines collaboratively to focus upon analysis of a particular event. Examples of multidisciplinary disaster research include mass identification of victims such as the Tenerife, Spain airport crash and the Oklahoma City (OKC) bombing (4,5). The Pinatubo Volcano eruption of 1991–1992 marks the highest achievement in the development of volcanic disaster mitigation; the multidisciplinary nature of the pre-crisis
e Keywords—multidisciplinary disaster research; disaster research paradigm; Oklahoma City bombing
INTRODUCTION Historically, disaster research efforts lag 6 –12 months behind the disaster event itself and include only 35– 40%
Disaster Medicine is coordinated by Irving Jacoby, Diego, California
RECEIVED: 5 May 1997; FINAL ACCEPTED: 9 December 1997.
SUBMISSION RECEIVED:
MD,
of the University of California San Diego Medical Center, San
19 November 1997; 621
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Figure 1. Participating agencies and departments constituting the DHSG.
preparation is evident from the following. State-of-the-art volcano monitoring techniques and instruments were applied to the volcano; the eruption was accurately predicted; hazard zonation maps were prepared and disseminated a month before the violent explosions; an alert and warning system was designed and implemented; and the disaster response machinery was mobilized at a timely point to mitigate the effects of the eruption (6). After the Mount St. Helens eruption, a multidisciplinary group was formed to evaluate the potential longterm health effects of the volcanic activity on the local populations (7). The Great Hanshin (Kobe) earthquake in January, 1995 was the first major earthquake to occur in a modern, densely populated urban setting, reported worldwide live by the media and documented in detail. The collaborative efforts of the Japanese Association for Acute Medicine and the Japanese Ministry of Health resulted in the recommendation of eight proposals for emergency medicine response in future mass disasters. This report is limited by its narrative nature without attention to detail of data collection methods or presentation of a comprehensive analysis of injury or cause of death (8). These preceding examples indicate that multidisciplinary investigation of disaster events occurs with increasing regularity. However, the limited scope of the investigative groups and the absence of established, validated study methodology, and lack of standardized data collection tools combine to restrict the quality and potential application of the research efforts.
The OKC bombing presented the scientific community with an opportunity to organize to study a major disaster within days of the incident, including a majority of the victims. The Disaster Health Study Group (DHSG) was created to facilitate and help steer this effort. MATERIALS AND METHODS This article is a descriptive study of the implementation of the multidisciplinary DHSG for disaster research in the aftermath of the OKC bombing. On post-disaster (PD) Day 2, the DHSG held its initial meeting. The Section of Emergency Medicine had initiated contact with the agencies and institutions involved in the response to the bombing and those agencies and departments with a potential for interest in disaster research. (Figure 1) Between 20 and 30 persons representing the listed agencies and institutions attended DHSG through PD Day 14. The attendance then held constant at 8 –10 members through the first year. DHSG Objectives The group organized by establishing the following objectives: 1. To form an inclusive multidisciplinary advisory and discussion group to facilitate the development and implementation of a high quality research effort on the bombing disaster. 2. To foster communication among research groups, institutions, agencies, and individuals in
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order to optimize the number of research studies and the amount of direct contact with victims or victims’ families in the acquisition of research data. 3. To develop a paradigm for the organization of multidisciplinary disaster research based on our collective experience in undertaking the bombing research effort. Early Empowerment of the DHSG Initially, the DHSG essentially empowered itself by organizing at a time when there was no other structure in place around which a multidisciplinary work group might coalesce. Two important declarations by state officials empowered the early organizational efforts of the DHSG during the second and third post-bombing weeks. First, Governor Frank Keating requested of the medical research community that the Office of Research Administration (ORA) of the University of Oklahoma (OU) be the agency responsible to oversee and govern all bombing-related research activities. The Governor requested that all research protocols be submitted to the Health Sciences Center Institutional Review Board (IRB) for review and approval. Second, State Commissioner of Health, Dr. Jerry Nida, declared all disasterrelated injuries to be reportable events requiring report to the Oklahoma State Department of Health (OSHD). Meeting Frequency and Format The group met on a daily basis for nearly 2 weeks, then with diminished frequency as the group workload diminished (see Table 1). We continued monthly meetings until April, 1996 —a year after the bombing. Each one-hour meeting consisted of four segments. First, those attending introduced themselves and identified the institution or agency they represented and their specific reason for attending the DHSG. Second, each agency, institution, or project spokesman gave an update on the work with which they were associated, including problems or assistance they required. Third, discussion of current problem areas, project status, and other identified needs was undertaken with special emphasis on eliciting information and guidance from experts present. Fourth, each meeting concluded with specific task assignment to those able and most fitted to accomplish the particular tasks at hand with an anticipated completion time for report back to the DHSG. Data Collection, Patient Confidentiality, and Data Access Issues Recognizing the potential rapidity of post-disaster data decay, the Section of Emergency Medicine made ar-
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rangements with local emergency departments (EDs) to collect copies of all medical records of disaster victims. In the rush to capture the data, no consideration was given to consent or confidentiality. All involved EDs provided the requested records, at least until the hospital attorneys realized the need for consent and blinding of the records. This inauspicious beginning led to conclusive discussions in the first few meetings of the DHSG about database development, ownership, and access issues. The diversity of study designs, wide variation in data sets to be collected, and patient consent and confidentiality issues required a clear plan clarifying database ownership, as well as an efficient method for investigators to gain access to the necessary records apropos each study. During PD Days 3 and 4, representatives of the OU Section of Emergency Medicine, the Centers for Disease Control, the U. S. Public Health Service, and the Uniformed Services University of the Health Sciences designed a prototype computerized disaster database for use in initial data collection. Local hospitals were contacted by phone and asked to secure and copy all disaster patient records, including pre-hospital triage tags, after deleting patient descriptors in preparation for a site visit by a data collection team. Emergency Medicine residents and Oklahoma State Department of Health (OSHD) technicians used the database to collect injury and utilization data from the local hospitals that had evaluated or treated bombing victims. The DHSG conceived of a comprehensive master database to which each study would add data to the files of each participant longitudinally as the studies were completed. In order to provide for this possibility, the OSHD structured a database that maintained full and complete patient identification at one level, but at a second level it provided patient records and data with patient descriptors deleted. A letter was drafted by the Deputy Commissioner of Health which guaranteed access to the database to those investigators who met certain qualifications.
University of Oklahoma Support Roles On PD Day 16 (May 4), the DHSG discussed the need for Institutional Review Board (IRB) approval of disaster-related research projects, since 13 research studies were now in the preparatory or data collection phase. The DHSG recommended that we seek a liaison member from the Office of Research Administration (ORA) of the University of Oklahoma to assist with IRB issues, to begin tracking developing research studies, and to coordinate the flow of research information to other local and out-of-area institutions as the need arose.
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Table 1. Main Events of the First Three Months of DHSG Operation DHSG Calendar of Events 4/19—Disaster occurs. EM Section calls for CDC, USPHS. 4/21—First meeting of DHSG. Discussed unique opportunity for research and disaster study. All participants agreed to develop data base. CDC team and OU EM Section developed data collection tool and field test with University and Children’s Hospital disaster patient records. State Health Commissioner declares disaster injuries reportable event. 4/22—EM residents organized into data collection teams. Data collection tasks defined. Public health epidemiology rep on each team. 4/24—Data collection initiated. Hospitals were asked to establish separate data file for disaster patients until data collection terminated. DHG named itself and agreed would serve as multidisciplinary advisory and collaborative coordinating group for disaster studies on bombing. 4/26—Individual hospital consent issues surfaced as reluctance to release records. Data collection continuing. State Health met with St. Anthony’s regarding consent. USPHS, OU Biostatistics & Epidemiology School of Public Health, Ophthalmology joined DHSG. CDC developing complementary database for victims not identified in emergency response. Mayor’s list of city employees obtained. Qualitative study of disaster treatment organized by State Trauma System, OU EM Section, and CDC. Injury to rescue workers study organized. State Mental Health beginning needs assessment. Medical Examiner’s data base access acquired for fatality data. Public affairs press conference planned with State Health Department, Trauma Advisory Council, and DHSG. 4/27—State Department of Mental Health expressed interest in research and screening projects. OU Epidemiology & Biostatistics offered expertise for study designs. Trauma System Evaluation planned. Injury study questionnaire placed into database format and developing database key. Bomb line call-in. Consent process for records release begun. 4/28—Damage zone maps provided for correlation of injury to patient location and structural damage. Victim identification process enlarged to include clinics and offices (ethnic and volunteer clinics also). Contact medical societies for victim ID and research studies in progress. EMSA reps attempting to obtain EMS run sheets form area hospitals. Data abstraction key delay. Qualitative study design moving forward. Interview training needed. Mission statement drafted. AIS scoring inclusion in database debated. Need to coordinate data entry with State Health Department to minimize duplicate work and contacts. List of potential research studies drafted. Aerial views of disaster scene presented. Hospital attorneys insisted that patient records remain at individual institutions. 5/1/95—Leaders of DHSG to define lead roles in emerging research studies; descriptive epidemiology, ED ultilization, qualitative trauma system evaluation, mental health study. ‘‘Project Heartland’’ transferred from American Red Cross to State Department of Mental Health (2 year project for post-disaster mental health needs). 5/1/95—Victim list, more than 700 individuals. Patient record abstraction tools 95% ready. Discussion by Mental Health of anticipated behavioral stress disorder peaks in next few months. Ophthalmology injury study progressing; Health Department to be provided eye study data. Distinguished visitors from Office Emergency Preparedness introduced. DHSG meeting reduced to twice weekly due to decreasing need for group meetings. 5/4/95—Deputy Commissioner for Health discussed patient confidentiality and database access coordination. Crime victim status of disaster victims. OU IRB liaison established. Medical record abstractor training underway. OU Department of Psychiatry announced task force formation to evaluate impact of blast on adult and child survivors. Post-disaster period consultant brought in by OSHD. 5/8/95—Charts from 3 hospitals abstracted. ED logs reviewed for victims through day 7 post-disaster. Major discussion on IRB review for all disaster studies. Role of Office of Research Administration to coordinate and track studies, victims’ privacy and confidentiality, coordination with remote disaster research teams. Gov. Keating appointed OUHSC Office of Research Administration to coordinate study of the bombing. State Health Commissioner required mandatory reporting of all bombing injuries to Health Department. 5/11/95—Health Department to coordinate victim contacts when required. Data abstraction progressing. State Mental Health meeting with mental health task force involving VA, OU Psychiatry, Child Psychiatry, State Mental Health, Biostatistics and Epidemiology to coordinate mental health surveillance study. CDC liaison expressed CDC interest in occupational injury. 5/15/95–Oklahoma Blood Institute provided disaster blood usage review. Research registry established (5 studies not IRB approved at this point). Discussion of victim interview details. News article on disaster research effort. Research funding plan through ORA. 5/18/95–Meetings reduced to weekly schedule. Radiology and Pediatrics study announced. Project Heartland opened. 5/25/97—Post-disaster psychiatric consultant met with DHSG. Psychiatry/Health Department discussion regarding confidentiality medical record treatment data due to physician patient privilege. Federal Workman’s compensation to disaster victims will make victim tracking potentially more difficult. Plan for longitudinal database more fully defined. 6/1/95—Governor’s Performance Team rep requesting information on how to improve interagency collaboration in disaster management. Overlap of PTSD studies identified. Investigators to meet to consider collaborative study. Audiology reports 75 patients entered multicenter screening trial. State Mental Health multidisciplinary recovery group to begin regular meetings. 6/8/95—Meeting with OU Vice-Provost to evaluate and direct OU disaster research, consider funding (comprehensive grant), develop comprehensive research registry. Qualitative trauma study interviewer training to begin. State Health Department reports denominators of victims completed for several downtown buildings. 6/15/95—Standard consent language provided by IRB for use in consent forms. Abbreviations: CDC, Center for Disease Control and Prevention; DHSG, Disaster Health Studies Group: ED, Emergency Department; EM, Emergency Medicine; EMSA, Emergency Medical Services Authority; ID, identification; IRB, Institutional Review Board; ORA, Office of Research Administration; OU, University of Oklahoma; PTSD, posttraumatic stress disorder; USPHS, United States Public Health Service; VA, Veterans Administration.
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Table 2. Standard Language Required in All Consent Forms I understand that my participation in this study is voluntary. I have not given up any of my legal rights or released any individual or institution from liability for negligence. I understand that I may withdraw from this study at any time without penalty or loss of benefits to which I am otherwise entitled. My treatment by and relations with the physicians and organizations involved in this study will not be affected now or in the future if I decide not to participate, or if I start the study and decide later to withdraw. I understand that records of this study will be kept confidential, and that I will not be identifiable by name or description in any reports or publications about this study. [If investigational drugs or devices are involved, add: ‘‘The Food and Drug Administration (FDA) may inspect the records of the study.’’] If I have questions about this study, or need to report any adverse effects from the research procedures, I will contact [the principal investigator] at (405) ???–??? during the work day or at (405) ???–??? in the evening or on weekends. If I have questions about my rights as research subject, I may contact the Director of Research Administration, in the OUHSC Office of Research Administration at (405) 271–2090. Additional Language Required in Consents & Telephone Scripts for Bomb-Related Studies 1. That the investigators are aware this may be one of many requests 2. It is not the investigator’s intent to burden the subjects in a potentially difficult time 3. Some of the questions could be emotionally stressful 4. If counseling is needed, subjects may contact the Project Heartland Center, Monday–Friday, 8 AM to 9 PM at 858–7070 or the 24 hour Reachout Hotline at 1–800–522-9054.
On PD Day 20 (May 8), the Director of the ORA advised the DHSG that Oklahoma Governor Frank Keating had charged the ORA to oversee and govern research issues arising from the bombing. The ORA had responded by carrying out a discussion with the Chairman of the University of Oklahoma IRB resulting in a decision by the IRB Chairman to give an expedited full IRB review to all disaster-related research in order to deal fully with the issues of study design, appropriate timing, patient confidentiality, and method of victim and family member contact. Of utmost importance to the University, the City of Oklahoma City, and the DHSG was the quality of the research to be conducted and the confidentiality of the subjects involved. The mission of the IRB was to act as a clearinghouse for these studies and to guarantee consistency in quality of research, sensitivity and compassion in the conduct of each project, confidentiality of the victims, their families and rescue workers, and to monitor the quantity of research conducted with these potential subjects. Standard language required for consent forms was made available to all researchers (Table 2). Included in that language were the telephone numbers for the Project Heartland Center and the Reachout Hotline so that victims discovered to have potential additional treatment needs might be referred to specific screening programs and then to an appropriate treatment location. The DHSG was able in part to identify some researchers from outside the metropolitan area who had begun conducting studies in Oklahoma City among bombing victims. These researchers were contacted by the Health Sciences Center IRB and their studies reviewed. The ORA, after collaboration with the OSHD, developed the following plan to carry out the Governor’s
request in spirit and with the concurrence and support of State Health. The plan contained the following actions: 1) OU IRB would be made available to give timely review to all submitted disaster study protocols and to advise investigators of possible duplicate or overlapping studies; 2) a research registry was developed listing all disaster research projects. The registry was then distributed via e-mail to the national network of research institutions and foundations of which the ORA was a member to advise of the ORA coordinating effort; 3) a letter was mailed from the IRB to all local hospitals and local research foundations advising of the willingness of the IRB to give timely, full-board review to disaster-related research and commending a similar practice by the local IRBs in order to fully address patient/family contact and confidentiality issues; 4) a public awareness program was undertaken by the ORA to inform the community of the rights of all persons to refuse to participate in any research activity if they desired to refuse; 5) the ORA also made itself available to anyone desiring information about proposed research projects or desiring identification and authentication of research projects and personnel; and 6) samples of suggested language guaranteeing sensitivity to victim contact issues and patient/victim confidentiality issues were made available to all local IRBs and on the university national e-mail network as suggested models for other researchers to use if they so desired (Table 2). Reports of research projects emanating from other institutions were to be forwarded to the ORA so that the ORA liaison person to the DHSG could contact the identified distant research team to inquire about IRB review process of their proposal by the IRB having jurisdiction for the work of the particular research group involved.
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Disaster Research Funding The ORA and the DHSG itself served an advisory function to investigators seeking funding for disaster-related research.
RESULTS The Disaster Health Studies Group was successful in meeting its established objectives: 1) a functional and effective multidisciplinary work group was formed promptly to facilitate the development of quality research on the OKC bombing disaster; 2) the DHSG was able to facilitate communication among a core group of institutions, agencies, and individual research groups to form a multidisciplinary disaster study group resulting in 22 well-designed research studies that were sensitive to victim privacy and to the number of contacts with victims required for data collection; 3) specific essential issues were addressed by the group and its leadership, which enabled the group to interact effectively and openly; 4) those group members with previous disaster management or research expertise were a valuable asset to the DHSG at large; 5) the DHSG leaders fostered commitment to an inclusive, multidisciplinary approach to disaster research in order to incorporate all interested parties into the disaster study process; and 6) the DHSG recorded its development and work so that it might offer a paradigm for the organization of future multidisciplinary disaster research. The DHSG participated in the development and approval process for 22 studies approved by the IRB. As of the date of this publication, approximately 7 are in the publication process or have been published, and several have been presented in scientific venues.
Data Base The DHSG facilitated the early comprehensive collection and analysis of medical data on cohorts of disaster victims representing almost 100% of the total victims in each cohort beginning within days to weeks of the catastrophic event itself. The Injury Prevention Service (IPS) of the Oklahoma State Department of Health located at 1000 NE 10th Street, Oklahoma City, Oklahoma conducted an investigation to assess the extent of injuries and health problems resulting from the bombing. Cases were identified using multiple data collection methods including: hospital chart reviews for persons treated in Emergency Departments or hospitalized in all metropolitan area hospitals; Medical Examiners’ reports; a physician survey
Table 3. Abridged Version (Excluding Checklists) of the OSHD Longitudinal Database Content OKC Bombing Data Base Content Patient demographic information Exact patient location when blast occurred Types of injuries sustained (checklist) How patient arrived to treatment facility (checklist) Emergency department treatment received (date, location, ED disposition, hospital disposition of admitted) Office of clinic visits for injury (dates of visit, number of visits) Contributing injury factors (checklist) Narrative description of injury event Procedure codes Potential for long-term physical disability and sequelae and disability description (checklist) Indicators of potential emotional disturbance (checklist) Hospital charges and physician charges
mailed to selected physicians in the metropolitan area; a building occupant survey; a survivors survey; a newspaper survey, “Searching for Survivors;” and submissions to First Lady Kathy Keating’s book (9). Database access is provided to any person who requests aggregate data from the Injury Prevention Service. A copy of the database may be provided to researchers approved by the Blast Injuries Study Group steering committee who sign a memorandum of agreement with the Oklahoma State Department of Health (see Table 3). The computerized database copy is stripped of identifiers such as name, date-of-birth, and other patient descriptors. Hard copy files and computers are maintained in locked cabinets and in locked rooms at OSHD. Only authorized OSDH personnel may work with the files. All data reported or released never contain personal identifiers. The inclusion of nearly 100% of disaster victims in the database is significant when compared to the 35– 40% participation rate of victim inclusion in most other disaster research studies. Our high inclusion rate was in great measure due to the multidisciplinary nature of the DHSG, permitting so many investigators, enablers, and implementers to work together toward shared goals. Other multidisciplinary successes of the DHSG were the rapid and efficient IRB approval process for disasterrelated studies and the design and deployment of the tiered, longitudinal Oklahoma State Health Department database as follows. The IPS is conducting a follow-up study in which survivors are being contacted and additional data are being collected about their injuries and the causes of the injuries. Additional questions are asked concerning follow-up data about their health and medical outcomes experienced since the bombing. IPS has redesigned the database to a relational database to accommodate this information. The database is expected to grow to 6
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megabytes in size after all follow-up data are entered. The benefit of using a relational database is that the data will be organized by a number of relational tables instead of being contained in one large “spread sheet.” This allows the database to contain large amounts of data and to require less memory to analyze. Also, the IPS plans to attach graphics files to the database in the near future.
DISCUSSION The strength of this multidisciplinary approach to disaster research as modeled by the DHSG is its inclusive and eclectic nature. A concerted and consistent effort was made to emphasize the inclusive nature of the DHSG. We found that the presence of many cooperating experts involved in direct and focused problem-solving around the table allowed the resolution of many issues efficiently and with expertise. Rapid and effective problemsolving commends the multidisciplinary process for selected future disaster research projects.
State Health Department Role Based upon our experience in the bombing, we recommend involvement of the State Health Department early in the research process whenever appropriate. With his willingness and authority to declare disaster-related injuries as reportable events, the State Health Commissioner became a very instrumental individual to allow early collection of data. The OSHD declaration of the reportable nature of disaster injuries certainly assisted research groups in identifying all disaster victims and collecting more complete data. We note that many patients were identified through their use of physicians’ offices or ethnic neighborhood clinics. Additional benefits of OSHD involvement were that full-time OSHD data collectors were individuals already known to hospitals and clinics because of other previous OSHD epidemiologic data collection requirements. These data collectors provided an immediately available, trained pool of manpower to assist in data collection. Though all data collection was accomplished voluntarily at hospitals and clinics, the OSHD designation of bombing injuries as reportable events offered potential leverage to data collection.
Database The actual benefits provided to database users of the OSHD longitudinal relational database cannot be evaluated at this time, however, the anticipated benefits are expected to result in a transfer of very specific detailed
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information to the researcher without the transfer of extraneous data that may be tangential to the researchers’ goals. Contact was maintained with database patients by attaching a consent form to the survivor’s survey, which was distributed to victims in the original investigation. Those willing to be contacted for future studies signed and returned the consent form to IPS. IPS is in the process of contacting the approximately 400 individuals who signed the consent form permitting follow-up. To contact survivors who did not sign a consent form, IPS will apply for Institutional Review Board approval to recontact victims with a future data collection tool.
Essential Issues The competitive nature of American scientific endeavor and the early development of some “turf issues” produced reluctance on the part of some investigators to participate in the master database concept. With guarantee from OSHD that access would be constantly available on a longitudinal basis to those investigators who met appropriately selected criteria, the reluctance was overcome and the tiered master database concept enjoyed uniform support from all groups. A letter was drafted by the Deputy Commissioner of Health that provided ongoing database access to qualified investigators. This guarantee involves the provision of anonymous data files to investigators while OSHD maintains a secure file in which all patients are fully identified. The creation of the tiered database means that all available data for each bombing victim will be cataloged in this single repository with guaranteed access to legitimate investigators. The database itself will simplify future research by its centralizing function while simultaneously relieving individual institutions of the need to maintain separate disaster medical record files for the many research efforts that are certain to follow over time. Efforts to maintain the inclusive nature of the multidisciplinary research study group were carried on throughout the development and operation of the DHSG. These efforts included calls by the DHSG leadership to investigators, institutions, and agencies to emphasize an inclusive approach and encourage participation in the DHSG. A persistent effort was made to make introductions of key individuals, investigators, and resources as they were identified to facilitate networking among all parties. The DHSG members agreed that media contacts would be very limited and offered only through the University Public Relations Office or the on-site daily briefing sessions at the rescue scene.
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ORA and Victim Privacy The Office of Research Administration served as the agency for the political empowerment intended by the Governor when he mandated that the ORA oversee and govern research issues arising from the bombing. The ORA and the IRB both were fully cognizant that neither was empowered to tell another university or research group that they may or may not conduct research dealing with the circumstances of the disaster, if the institution or group was outside of the jurisdiction of the OU IRB. Therefore, Governor Keating’s mandate to the ORA to oversee and govern bombing research issues may have actually exceeded his authority to do so. Nonetheless, since the ORA and IRB were both represented in the DHSG, the Governor’s mandate aided the empowerment of the DHSG early in its course and was greatly beneficial to the coordinating and facilitating activity of the DHSG. The efforts of the ORA and IRB procedural processes were directed toward the standard issues of study design and adequacy of data collection with a concerned scrutiny for the preservation of a compassionate approach to victims and victims’ families. Their approach paid special attention to patient confidentiality and type of victim contact. During the IRB review process, effort was expended to consolidate or combine overlapping studies in order to minimize the number of direct victim or family contacts by research teams. During the early months post-bombing, several calls were made to out-of-state institutions sponsoring disaster-related research to offer assistance in study design, IRB review, and consent and confidentiality issues. The calls were handled with discrete attention to issues of territoriality and local IRB authority and responsibility. Most calls were well-received and resulted in a mutual appreciation of the concerns involved on behalf of research teams from the respective institutions. One encounter between the Deputy Commissioner of Health and a free-lance researcher planning to interview victims without appropriate attention to the details of victim rights, consent, and confidentiality resulted in the prompt departure of the individual involved the same afternoon without collecting any data.
Funding Funding has been meager for the listed studies related to the bombing and is the major reason that studies have become listed as inactive studies (Table 4). Few local investigators had acquired a previous track record of successful funding for disaster research at the time of the bombing. Those most successful at acquiring funding in
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the immediate aftermath were able to attach their disaster research proposal to another current grant proposal somewhat relevant to the proposed post-bombing research proposal, resulting in a grant extension rather than new funding. Another issue related to funding of research proposals was the relative inexperience of most foundations with funding of disaster research. Some foundations requested names of reviewers capable of reviewing disaster research protocols. The DHSG was able to identify independent reviewer lists through the Centers for Disease Control and the US Public Health Association for use by the foundations. Though federal funding was available through the Federal Emergency Management Agency (FEMA), that funding was specifically designated for treatment needs rather than specified for research projects. Some funding was allegedly available to rent computers or pay for temporary labor, neither of which were realistic expenditures for most of the projects within the time limits of the FEMA grants, which ended at 90 days after the bombing. Most charitable trusts and foundations that investigators approached seeking funding had prioritized funding patient treatment plans above other research work. Some investigators were able to merge treatment interests with research by embedding needs evaluation tools such as interviews or questionnaires within their study design.
Feedback Loop Research to determine the medical cost of disasters is relevant material for further disaster research. Evaluative tools such as outreach surveys or interviews are a useful way to measure the impact of a disaster upon a portion of the population in the area exposed to the disaster. As a direct result of surveys related to the bombing, the DHSG discovered there are approximately 90 different languages spoken in the metropolitan area of Oklahoma City. Some of the subpopulations identified had cultural behaviors that could have obscured the cost of postdisaster medical care to those groups. An example was the Vietnamese community of Oklahoma City, members of which seek care almost exclusively from Vietnamese physicians or clinics in their immediate locale. Another was the Hispanic community of south Oklahoma City, which suffered several fatalities and much emotional trauma. Neither of these subgroups would have been included in the cost of care analysis except that victim impact was measured on certain of the research surveys. The survey data triggered further investigation of the methods to determine the actual cost care in these ethnic groups. Contact between an investigator and a victim by sur-
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Table 4. Studies and Research Interests Submitted to ORA Name Mallonee, Sue
Department
Carter, L. Phillip
Oklahoma State Dept. of Health, Injury Prevention Neurosurgery
Bradford, Cynthia Van Vampen, Louann
Ophthalmology Otorhinolaryngology
Stuemky, John
Pediatrics
Gurwitch, Robin
Nixon, Sara Jo
Pediatrics/Child Study Center Pediatrics/Child Study Center Pediatrics/Child Study Center Psychiatry
Pfefferbaum, Betty
Psychiatry
Pfefferbaum, Betty
Psychiatry
Tucker, Phebe
Psychiatry
Tytle, Timothy Hogan, David E.
Radiology Emergency Medicine
Hogan, David E.
Emergency Medicine
Hogan, David E.
Emergency Medicine
Scideman, Ruth
School of Nursing
Boatright, Daniel T.
Public Health
Smith, David
Biostatistics/Epidemiology
Beasley, Stewart
Psychiatry
Adams, Russell L.
Psychiatry
Dingokinski, Eric
Psychiatry
Jones, Herman Lovallo, William R. Nixon, Sara Jo
Psychiatry Psychiatry Psychiatry
Gurwitch, Robin Gurwitch, Robin
Study Title Physicial Injuries and Fatalities Resulting from the Oklahoma City Bombing Neurosurgical Aspects of the Oklahoma City Bombing OKC Disaster—Eye Injuries (records review only) Status of Hearing and Balance Following Blast Exposure Pattern of Injury and Hospital Course of Pediatric Blast Victims (records review only) Oklahoma City Bombing: Risk Identification and Interventions with Young Children Intervention and Risk Assessment for the OKC Bombing Disaster Coping Interventions for Disaster-Related Stress The Oklahoma City Bombing Incident: Risk and Protective Factors in Stress Response Disaster Risk Exposure and Screening in the Oklahoma City Public Schools Disaster Risk Exposure and Screening in DMHSAS clinics Do Physiologic Reactivity or Other Factors Predict PTSD? The Role of Radiology in the OKC Bombing Qualitative Study of the April 19, 1995 Terrorist Bomb Attack in OKC, OK: Assessment of Emergency Department Response Telephonic Qualitative Study of the April 19, 1995 Terrorist Bomb Attack in OKC, OK: Assessment of Survivor Impact Retrospective Descriptive Analysis of the April 19, 1995 Terrorist Blast in Oklahoma City (Records review only) Thematic Analysis of Responses of Children to a Disaster Involving Other Children (review of children’s art work) Prospective Study to Evaluate Potential Changes in Risk Behavior Prospective Study to Evaluate Potential Changes in Risk Behavior The Effects of Using the Mass Media to Reduce Stress Anxiety Immediately Following Certain Catastrophic Events The Neuropsychological Aspects of Acute and Prolonged Stress Induced by Terrorism Book, One Family Under the Same Sky (Children’s art work) Post-Concussive Phenomena with PTSD PTSD Symptoms Related to Blast Exposure Establishing a Registry Database for Long Term Follow-Up
vey or interview comment would sometimes identify the personnel of a particular office or portion of a building in which previously unreported effect of the bombing was occurring. People had begun to seek private counselors through their own initiative that had not been reported in the medical cost accounting process. This information, discovered by focused research studies, was passed on to Project Heartland for screening activity and referral to treatment providers when indicated. These are some ways in which active research has assisted and will
Active/Inactive Active Active Inactive Active Inactive Active Inactive Inactive Active Active Inactive Active Active Active Active Active Inactive Inactive Inactive Inactive Inactive Inactive Inactive Inactive
continue to contribute to determining the full medical and social cost of the bombing.
Research Registry The first round of research studies is now making its way into the literature approximately 18 –24 months after the bombing. A second round of studies addressing safety and structural aspects of building design, personal safety,
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and blast survival skills is planned. A comparative study of various disasters upon the respective medical communities and utilization of medical resources may be of interest to some investigators. The Oklahoma City bombing also provides an opportunity to track a discrete group of blast injury survivors longitudinally in order to attempt to identify the longterm effects of blast injury in survivors. The comprehensive Oklahoma State Health Department database of bombing victims will help to provide the data that may redeem some of the tragedy and loss experienced in our community. Our experience with the DHSG confirms that multidisciplinary disaster research can be initiated promptly after the catastrophic event. Coordination of data preservation, collection, and analysis performed promptly leads to a larger amount of more accurate scientific information gathered from the event. The DHSG found it worthwhile to call together a multidisciplinary group of scientists, public health officials, and rescue organizations in order to provide a check and balance approach that ensured that well-formulated health-related questions were identified. The result of this approach was that well-designed studies were planned that will provide answers to the key questions that have been asked. Time spent in the careful drafting of questions, in establishing effective ground rules, and in attentive assignment of priorities was repaid multiple times over in the scientific credibility of the research now being produced by the group. Disaster research funding suffers from the relative lack of a fast-track mechanism for the initiation of such research. Federal agencies that respond to disasters (CDC, FEMA) and federal agencies that fund medical research (National Science Foundation, National Institutes of Health) should
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consider the development of such a mechanism to aid in evaluating and funding urgent disaster questions for which the usual mechanism of funding will jeopardize the timeliness and quality of the research. Despite the problems encountered and the paucity of funding, a great deal of high quality research has been carried out through the activities of the DHSG. Results reporting has been presented in many scientific fora, and in the near future study results will be published in peer-reviewed journals for a large number of disciplines. Since the impact and effects of disasters cross all lines of science and society, the reporting of results of wellconceived, effectively implemented disaster research studies should also help meet the need for credible conclusions upon which to plan better models for disaster preparedness and intervention.
REFERENCES 1. Lillibridge SL, Noji EK. The importance of medical records in disaster epidemiology in research. J AHIMA. 1992;63:137– 8. 2. Chakraborty AK. Disaster epidemiology and health management. Indian J Pub Hlth. 1992;36:94 –100. 3. Waeckerle JF, Lillibridge SR, Burkle FM, Noji EJ. Disaster medicine: challenges for today. Ann Emerg Med. 1994;23:715– 8. 4. van den Bos A. Mass identification: a multidisciplinary operation. A J Forensic Med Path. 1980;1:265–70. 5. Jordan F. Verbal report. Office of the Chief Medical Examiner, State of Oklahoma. 6. Tayag JC, Punongbayan RS. Volcanic disaster mitigation in the Philippines: experience from Mt. Pinatubo. Disasters. 1994;18:1– 15. 7. Buist AS, Martin TR, Shore JH, et al. The development of a multidisciplinary plan for evaluation of the long-term health effects of the Mount St. Helens eruptions. AJPH. 1986;76:39 – 44. 8. Tanaka K. The Kobe earthquake: the system response. A disaster report from Japan. European J Emerg Med. 1996;3:263–9. 9. Keating, K. Their name. In: Irving, C, ed. Random House: New York; 1995.
PII S0736-4679(98)00042-0
Selected Topics: Disaster Medicine
A PARADIGM FOR MULTIDISCIPLINARY DISASTER RESEARCH: THE OKLAHOMA CITY EXPERIENCE Gary Quick,
MD
Department of Surgery, Section of Emergency Medicine, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma Reprint Address: Gary Quick, MD, Section of Emergency Medicine, University of Oklahoma Health Sciences Center, PO Box 26307, Oklahoma City, OK 73126
e Abstract—The objective of this article is to describe the creation and operation of a multidisciplinary group to examine the Oklahoma City (OKC) bombing. The OKC bombing presented an opportunity to study a major disaster within 2 days of the incident. The Disaster Health Studies Group (DHSG) was created to facilitate this effort. The creation, organization, and operation of the DHSG is outlined. In addition the mission statement, participants, communications, political empowerment, data preservation and collection, data ownership, patient rights, threats to the DHSG, media interactions, funding, the institutional review board process, and results reporting will be detailed. The 22 projects of the DHSG are listed. In conclusion, four main findings are examined: 1) A multidisciplinary disaster study group is feasible and can be rapidly organized; 2) certain organizations and institutions form a core group for facilitation of the research effort; 3) specific issues must be addressed in order for the group to succeed; and 4) the group leader should have disaster expertise and be committed to the multidisciplinary process. © 1998 Elsevier Science Inc.
of the disaster victims. Most projects are carried out by a limited number of investigators examining a relatively small portion of the entire scenario of the disaster (1). Therefore, most disaster research reports are weakened by data loss due to time-sensitive data decay and the limited perspective of the research team. Health management during and after a disaster is, in its essence, a multidisciplinary venture marked by rapid assessment of the magnitude of health needs, management of mass casualties, coordination of relief activities, epidemiologic surveillance, disease control, environmental health management, food and nutrition, the management of health relief supplies, public settlements, communication and transport, management of relief assistance, and normalization of post-disaster lifestyle (2). The science of disaster medicine is founded in multidisciplinary medical skills that embrace the therapeutic and the preventive spectrum of health care (3). Recent disaster research literature has included a limited number of areas of multidisciplinary disaster research bringing together the strength and skill of several disciplines collaboratively to focus upon analysis of a particular event. Examples of multidisciplinary disaster research include mass identification of victims such as the Tenerife, Spain airport crash and the Oklahoma City (OKC) bombing (4,5). The Pinatubo Volcano eruption of 1991–1992 marks the highest achievement in the development of volcanic disaster mitigation; the multidisciplinary nature of the pre-crisis
e Keywords—multidisciplinary disaster research; disaster research paradigm; Oklahoma City bombing
INTRODUCTION Historically, disaster research efforts lag 6 –12 months behind the disaster event itself and include only 35– 40%
Disaster Medicine is coordinated by Irving Jacoby, Diego, California
RECEIVED: 5 May 1997; FINAL ACCEPTED: 9 December 1997.
SUBMISSION RECEIVED:
MD,
of the University of California San Diego Medical Center, San
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Figure 1. Participating agencies and departments constituting the DHSG.
preparation is evident from the following. State-of-the-art volcano monitoring techniques and instruments were applied to the volcano; the eruption was accurately predicted; hazard zonation maps were prepared and disseminated a month before the violent explosions; an alert and warning system was designed and implemented; and the disaster response machinery was mobilized at a timely point to mitigate the effects of the eruption (6). After the Mount St. Helens eruption, a multidisciplinary group was formed to evaluate the potential longterm health effects of the volcanic activity on the local populations (7). The Great Hanshin (Kobe) earthquake in January, 1995 was the first major earthquake to occur in a modern, densely populated urban setting, reported worldwide live by the media and documented in detail. The collaborative efforts of the Japanese Association for Acute Medicine and the Japanese Ministry of Health resulted in the recommendation of eight proposals for emergency medicine response in future mass disasters. This report is limited by its narrative nature without attention to detail of data collection methods or presentation of a comprehensive analysis of injury or cause of death (8). These preceding examples indicate that multidisciplinary investigation of disaster events occurs with increasing regularity. However, the limited scope of the investigative groups and the absence of established, validated study methodology, and lack of standardized data collection tools combine to restrict the quality and potential application of the research efforts.
The OKC bombing presented the scientific community with an opportunity to organize to study a major disaster within days of the incident, including a majority of the victims. The Disaster Health Study Group (DHSG) was created to facilitate and help steer this effort. MATERIALS AND METHODS This article is a descriptive study of the implementation of the multidisciplinary DHSG for disaster research in the aftermath of the OKC bombing. On post-disaster (PD) Day 2, the DHSG held its initial meeting. The Section of Emergency Medicine had initiated contact with the agencies and institutions involved in the response to the bombing and those agencies and departments with a potential for interest in disaster research. (Figure 1) Between 20 and 30 persons representing the listed agencies and institutions attended DHSG through PD Day 14. The attendance then held constant at 8 –10 members through the first year. DHSG Objectives The group organized by establishing the following objectives: 1. To form an inclusive multidisciplinary advisory and discussion group to facilitate the development and implementation of a high quality research effort on the bombing disaster. 2. To foster communication among research groups, institutions, agencies, and individuals in
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order to optimize the number of research studies and the amount of direct contact with victims or victims’ families in the acquisition of research data. 3. To develop a paradigm for the organization of multidisciplinary disaster research based on our collective experience in undertaking the bombing research effort. Early Empowerment of the DHSG Initially, the DHSG essentially empowered itself by organizing at a time when there was no other structure in place around which a multidisciplinary work group might coalesce. Two important declarations by state officials empowered the early organizational efforts of the DHSG during the second and third post-bombing weeks. First, Governor Frank Keating requested of the medical research community that the Office of Research Administration (ORA) of the University of Oklahoma (OU) be the agency responsible to oversee and govern all bombing-related research activities. The Governor requested that all research protocols be submitted to the Health Sciences Center Institutional Review Board (IRB) for review and approval. Second, State Commissioner of Health, Dr. Jerry Nida, declared all disasterrelated injuries to be reportable events requiring report to the Oklahoma State Department of Health (OSHD). Meeting Frequency and Format The group met on a daily basis for nearly 2 weeks, then with diminished frequency as the group workload diminished (see Table 1). We continued monthly meetings until April, 1996 —a year after the bombing. Each one-hour meeting consisted of four segments. First, those attending introduced themselves and identified the institution or agency they represented and their specific reason for attending the DHSG. Second, each agency, institution, or project spokesman gave an update on the work with which they were associated, including problems or assistance they required. Third, discussion of current problem areas, project status, and other identified needs was undertaken with special emphasis on eliciting information and guidance from experts present. Fourth, each meeting concluded with specific task assignment to those able and most fitted to accomplish the particular tasks at hand with an anticipated completion time for report back to the DHSG. Data Collection, Patient Confidentiality, and Data Access Issues Recognizing the potential rapidity of post-disaster data decay, the Section of Emergency Medicine made ar-
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rangements with local emergency departments (EDs) to collect copies of all medical records of disaster victims. In the rush to capture the data, no consideration was given to consent or confidentiality. All involved EDs provided the requested records, at least until the hospital attorneys realized the need for consent and blinding of the records. This inauspicious beginning led to conclusive discussions in the first few meetings of the DHSG about database development, ownership, and access issues. The diversity of study designs, wide variation in data sets to be collected, and patient consent and confidentiality issues required a clear plan clarifying database ownership, as well as an efficient method for investigators to gain access to the necessary records apropos each study. During PD Days 3 and 4, representatives of the OU Section of Emergency Medicine, the Centers for Disease Control, the U. S. Public Health Service, and the Uniformed Services University of the Health Sciences designed a prototype computerized disaster database for use in initial data collection. Local hospitals were contacted by phone and asked to secure and copy all disaster patient records, including pre-hospital triage tags, after deleting patient descriptors in preparation for a site visit by a data collection team. Emergency Medicine residents and Oklahoma State Department of Health (OSHD) technicians used the database to collect injury and utilization data from the local hospitals that had evaluated or treated bombing victims. The DHSG conceived of a comprehensive master database to which each study would add data to the files of each participant longitudinally as the studies were completed. In order to provide for this possibility, the OSHD structured a database that maintained full and complete patient identification at one level, but at a second level it provided patient records and data with patient descriptors deleted. A letter was drafted by the Deputy Commissioner of Health which guaranteed access to the database to those investigators who met certain qualifications.
University of Oklahoma Support Roles On PD Day 16 (May 4), the DHSG discussed the need for Institutional Review Board (IRB) approval of disaster-related research projects, since 13 research studies were now in the preparatory or data collection phase. The DHSG recommended that we seek a liaison member from the Office of Research Administration (ORA) of the University of Oklahoma to assist with IRB issues, to begin tracking developing research studies, and to coordinate the flow of research information to other local and out-of-area institutions as the need arose.
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Table 1. Main Events of the First Three Months of DHSG Operation DHSG Calendar of Events 4/19—Disaster occurs. EM Section calls for CDC, USPHS. 4/21—First meeting of DHSG. Discussed unique opportunity for research and disaster study. All participants agreed to develop data base. CDC team and OU EM Section developed data collection tool and field test with University and Children’s Hospital disaster patient records. State Health Commissioner declares disaster injuries reportable event. 4/22—EM residents organized into data collection teams. Data collection tasks defined. Public health epidemiology rep on each team. 4/24—Data collection initiated. Hospitals were asked to establish separate data file for disaster patients until data collection terminated. DHG named itself and agreed would serve as multidisciplinary advisory and collaborative coordinating group for disaster studies on bombing. 4/26—Individual hospital consent issues surfaced as reluctance to release records. Data collection continuing. State Health met with St. Anthony’s regarding consent. USPHS, OU Biostatistics & Epidemiology School of Public Health, Ophthalmology joined DHSG. CDC developing complementary database for victims not identified in emergency response. Mayor’s list of city employees obtained. Qualitative study of disaster treatment organized by State Trauma System, OU EM Section, and CDC. Injury to rescue workers study organized. State Mental Health beginning needs assessment. Medical Examiner’s data base access acquired for fatality data. Public affairs press conference planned with State Health Department, Trauma Advisory Council, and DHSG. 4/27—State Department of Mental Health expressed interest in research and screening projects. OU Epidemiology & Biostatistics offered expertise for study designs. Trauma System Evaluation planned. Injury study questionnaire placed into database format and developing database key. Bomb line call-in. Consent process for records release begun. 4/28—Damage zone maps provided for correlation of injury to patient location and structural damage. Victim identification process enlarged to include clinics and offices (ethnic and volunteer clinics also). Contact medical societies for victim ID and research studies in progress. EMSA reps attempting to obtain EMS run sheets form area hospitals. Data abstraction key delay. Qualitative study design moving forward. Interview training needed. Mission statement drafted. AIS scoring inclusion in database debated. Need to coordinate data entry with State Health Department to minimize duplicate work and contacts. List of potential research studies drafted. Aerial views of disaster scene presented. Hospital attorneys insisted that patient records remain at individual institutions. 5/1/95—Leaders of DHSG to define lead roles in emerging research studies; descriptive epidemiology, ED ultilization, qualitative trauma system evaluation, mental health study. ‘‘Project Heartland’’ transferred from American Red Cross to State Department of Mental Health (2 year project for post-disaster mental health needs). 5/1/95—Victim list, more than 700 individuals. Patient record abstraction tools 95% ready. Discussion by Mental Health of anticipated behavioral stress disorder peaks in next few months. Ophthalmology injury study progressing; Health Department to be provided eye study data. Distinguished visitors from Office Emergency Preparedness introduced. DHSG meeting reduced to twice weekly due to decreasing need for group meetings. 5/4/95—Deputy Commissioner for Health discussed patient confidentiality and database access coordination. Crime victim status of disaster victims. OU IRB liaison established. Medical record abstractor training underway. OU Department of Psychiatry announced task force formation to evaluate impact of blast on adult and child survivors. Post-disaster period consultant brought in by OSHD. 5/8/95—Charts from 3 hospitals abstracted. ED logs reviewed for victims through day 7 post-disaster. Major discussion on IRB review for all disaster studies. Role of Office of Research Administration to coordinate and track studies, victims’ privacy and confidentiality, coordination with remote disaster research teams. Gov. Keating appointed OUHSC Office of Research Administration to coordinate study of the bombing. State Health Commissioner required mandatory reporting of all bombing injuries to Health Department. 5/11/95—Health Department to coordinate victim contacts when required. Data abstraction progressing. State Mental Health meeting with mental health task force involving VA, OU Psychiatry, Child Psychiatry, State Mental Health, Biostatistics and Epidemiology to coordinate mental health surveillance study. CDC liaison expressed CDC interest in occupational injury. 5/15/95–Oklahoma Blood Institute provided disaster blood usage review. Research registry established (5 studies not IRB approved at this point). Discussion of victim interview details. News article on disaster research effort. Research funding plan through ORA. 5/18/95–Meetings reduced to weekly schedule. Radiology and Pediatrics study announced. Project Heartland opened. 5/25/97—Post-disaster psychiatric consultant met with DHSG. Psychiatry/Health Department discussion regarding confidentiality medical record treatment data due to physician patient privilege. Federal Workman’s compensation to disaster victims will make victim tracking potentially more difficult. Plan for longitudinal database more fully defined. 6/1/95—Governor’s Performance Team rep requesting information on how to improve interagency collaboration in disaster management. Overlap of PTSD studies identified. Investigators to meet to consider collaborative study. Audiology reports 75 patients entered multicenter screening trial. State Mental Health multidisciplinary recovery group to begin regular meetings. 6/8/95—Meeting with OU Vice-Provost to evaluate and direct OU disaster research, consider funding (comprehensive grant), develop comprehensive research registry. Qualitative trauma study interviewer training to begin. State Health Department reports denominators of victims completed for several downtown buildings. 6/15/95—Standard consent language provided by IRB for use in consent forms. Abbreviations: CDC, Center for Disease Control and Prevention; DHSG, Disaster Health Studies Group: ED, Emergency Department; EM, Emergency Medicine; EMSA, Emergency Medical Services Authority; ID, identification; IRB, Institutional Review Board; ORA, Office of Research Administration; OU, University of Oklahoma; PTSD, posttraumatic stress disorder; USPHS, United States Public Health Service; VA, Veterans Administration.
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Table 2. Standard Language Required in All Consent Forms I understand that my participation in this study is voluntary. I have not given up any of my legal rights or released any individual or institution from liability for negligence. I understand that I may withdraw from this study at any time without penalty or loss of benefits to which I am otherwise entitled. My treatment by and relations with the physicians and organizations involved in this study will not be affected now or in the future if I decide not to participate, or if I start the study and decide later to withdraw. I understand that records of this study will be kept confidential, and that I will not be identifiable by name or description in any reports or publications about this study. [If investigational drugs or devices are involved, add: ‘‘The Food and Drug Administration (FDA) may inspect the records of the study.’’] If I have questions about this study, or need to report any adverse effects from the research procedures, I will contact [the principal investigator] at (405) ???–??? during the work day or at (405) ???–??? in the evening or on weekends. If I have questions about my rights as research subject, I may contact the Director of Research Administration, in the OUHSC Office of Research Administration at (405) 271–2090. Additional Language Required in Consents & Telephone Scripts for Bomb-Related Studies 1. That the investigators are aware this may be one of many requests 2. It is not the investigator’s intent to burden the subjects in a potentially difficult time 3. Some of the questions could be emotionally stressful 4. If counseling is needed, subjects may contact the Project Heartland Center, Monday–Friday, 8 AM to 9 PM at 858–7070 or the 24 hour Reachout Hotline at 1–800–522-9054.
On PD Day 20 (May 8), the Director of the ORA advised the DHSG that Oklahoma Governor Frank Keating had charged the ORA to oversee and govern research issues arising from the bombing. The ORA had responded by carrying out a discussion with the Chairman of the University of Oklahoma IRB resulting in a decision by the IRB Chairman to give an expedited full IRB review to all disaster-related research in order to deal fully with the issues of study design, appropriate timing, patient confidentiality, and method of victim and family member contact. Of utmost importance to the University, the City of Oklahoma City, and the DHSG was the quality of the research to be conducted and the confidentiality of the subjects involved. The mission of the IRB was to act as a clearinghouse for these studies and to guarantee consistency in quality of research, sensitivity and compassion in the conduct of each project, confidentiality of the victims, their families and rescue workers, and to monitor the quantity of research conducted with these potential subjects. Standard language required for consent forms was made available to all researchers (Table 2). Included in that language were the telephone numbers for the Project Heartland Center and the Reachout Hotline so that victims discovered to have potential additional treatment needs might be referred to specific screening programs and then to an appropriate treatment location. The DHSG was able in part to identify some researchers from outside the metropolitan area who had begun conducting studies in Oklahoma City among bombing victims. These researchers were contacted by the Health Sciences Center IRB and their studies reviewed. The ORA, after collaboration with the OSHD, developed the following plan to carry out the Governor’s
request in spirit and with the concurrence and support of State Health. The plan contained the following actions: 1) OU IRB would be made available to give timely review to all submitted disaster study protocols and to advise investigators of possible duplicate or overlapping studies; 2) a research registry was developed listing all disaster research projects. The registry was then distributed via e-mail to the national network of research institutions and foundations of which the ORA was a member to advise of the ORA coordinating effort; 3) a letter was mailed from the IRB to all local hospitals and local research foundations advising of the willingness of the IRB to give timely, full-board review to disaster-related research and commending a similar practice by the local IRBs in order to fully address patient/family contact and confidentiality issues; 4) a public awareness program was undertaken by the ORA to inform the community of the rights of all persons to refuse to participate in any research activity if they desired to refuse; 5) the ORA also made itself available to anyone desiring information about proposed research projects or desiring identification and authentication of research projects and personnel; and 6) samples of suggested language guaranteeing sensitivity to victim contact issues and patient/victim confidentiality issues were made available to all local IRBs and on the university national e-mail network as suggested models for other researchers to use if they so desired (Table 2). Reports of research projects emanating from other institutions were to be forwarded to the ORA so that the ORA liaison person to the DHSG could contact the identified distant research team to inquire about IRB review process of their proposal by the IRB having jurisdiction for the work of the particular research group involved.
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Disaster Research Funding The ORA and the DHSG itself served an advisory function to investigators seeking funding for disaster-related research.
RESULTS The Disaster Health Studies Group was successful in meeting its established objectives: 1) a functional and effective multidisciplinary work group was formed promptly to facilitate the development of quality research on the OKC bombing disaster; 2) the DHSG was able to facilitate communication among a core group of institutions, agencies, and individual research groups to form a multidisciplinary disaster study group resulting in 22 well-designed research studies that were sensitive to victim privacy and to the number of contacts with victims required for data collection; 3) specific essential issues were addressed by the group and its leadership, which enabled the group to interact effectively and openly; 4) those group members with previous disaster management or research expertise were a valuable asset to the DHSG at large; 5) the DHSG leaders fostered commitment to an inclusive, multidisciplinary approach to disaster research in order to incorporate all interested parties into the disaster study process; and 6) the DHSG recorded its development and work so that it might offer a paradigm for the organization of future multidisciplinary disaster research. The DHSG participated in the development and approval process for 22 studies approved by the IRB. As of the date of this publication, approximately 7 are in the publication process or have been published, and several have been presented in scientific venues.
Data Base The DHSG facilitated the early comprehensive collection and analysis of medical data on cohorts of disaster victims representing almost 100% of the total victims in each cohort beginning within days to weeks of the catastrophic event itself. The Injury Prevention Service (IPS) of the Oklahoma State Department of Health located at 1000 NE 10th Street, Oklahoma City, Oklahoma conducted an investigation to assess the extent of injuries and health problems resulting from the bombing. Cases were identified using multiple data collection methods including: hospital chart reviews for persons treated in Emergency Departments or hospitalized in all metropolitan area hospitals; Medical Examiners’ reports; a physician survey
Table 3. Abridged Version (Excluding Checklists) of the OSHD Longitudinal Database Content OKC Bombing Data Base Content Patient demographic information Exact patient location when blast occurred Types of injuries sustained (checklist) How patient arrived to treatment facility (checklist) Emergency department treatment received (date, location, ED disposition, hospital disposition of admitted) Office of clinic visits for injury (dates of visit, number of visits) Contributing injury factors (checklist) Narrative description of injury event Procedure codes Potential for long-term physical disability and sequelae and disability description (checklist) Indicators of potential emotional disturbance (checklist) Hospital charges and physician charges
mailed to selected physicians in the metropolitan area; a building occupant survey; a survivors survey; a newspaper survey, “Searching for Survivors;” and submissions to First Lady Kathy Keating’s book (9). Database access is provided to any person who requests aggregate data from the Injury Prevention Service. A copy of the database may be provided to researchers approved by the Blast Injuries Study Group steering committee who sign a memorandum of agreement with the Oklahoma State Department of Health (see Table 3). The computerized database copy is stripped of identifiers such as name, date-of-birth, and other patient descriptors. Hard copy files and computers are maintained in locked cabinets and in locked rooms at OSHD. Only authorized OSDH personnel may work with the files. All data reported or released never contain personal identifiers. The inclusion of nearly 100% of disaster victims in the database is significant when compared to the 35– 40% participation rate of victim inclusion in most other disaster research studies. Our high inclusion rate was in great measure due to the multidisciplinary nature of the DHSG, permitting so many investigators, enablers, and implementers to work together toward shared goals. Other multidisciplinary successes of the DHSG were the rapid and efficient IRB approval process for disasterrelated studies and the design and deployment of the tiered, longitudinal Oklahoma State Health Department database as follows. The IPS is conducting a follow-up study in which survivors are being contacted and additional data are being collected about their injuries and the causes of the injuries. Additional questions are asked concerning follow-up data about their health and medical outcomes experienced since the bombing. IPS has redesigned the database to a relational database to accommodate this information. The database is expected to grow to 6
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megabytes in size after all follow-up data are entered. The benefit of using a relational database is that the data will be organized by a number of relational tables instead of being contained in one large “spread sheet.” This allows the database to contain large amounts of data and to require less memory to analyze. Also, the IPS plans to attach graphics files to the database in the near future.
DISCUSSION The strength of this multidisciplinary approach to disaster research as modeled by the DHSG is its inclusive and eclectic nature. A concerted and consistent effort was made to emphasize the inclusive nature of the DHSG. We found that the presence of many cooperating experts involved in direct and focused problem-solving around the table allowed the resolution of many issues efficiently and with expertise. Rapid and effective problemsolving commends the multidisciplinary process for selected future disaster research projects.
State Health Department Role Based upon our experience in the bombing, we recommend involvement of the State Health Department early in the research process whenever appropriate. With his willingness and authority to declare disaster-related injuries as reportable events, the State Health Commissioner became a very instrumental individual to allow early collection of data. The OSHD declaration of the reportable nature of disaster injuries certainly assisted research groups in identifying all disaster victims and collecting more complete data. We note that many patients were identified through their use of physicians’ offices or ethnic neighborhood clinics. Additional benefits of OSHD involvement were that full-time OSHD data collectors were individuals already known to hospitals and clinics because of other previous OSHD epidemiologic data collection requirements. These data collectors provided an immediately available, trained pool of manpower to assist in data collection. Though all data collection was accomplished voluntarily at hospitals and clinics, the OSHD designation of bombing injuries as reportable events offered potential leverage to data collection.
Database The actual benefits provided to database users of the OSHD longitudinal relational database cannot be evaluated at this time, however, the anticipated benefits are expected to result in a transfer of very specific detailed
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information to the researcher without the transfer of extraneous data that may be tangential to the researchers’ goals. Contact was maintained with database patients by attaching a consent form to the survivor’s survey, which was distributed to victims in the original investigation. Those willing to be contacted for future studies signed and returned the consent form to IPS. IPS is in the process of contacting the approximately 400 individuals who signed the consent form permitting follow-up. To contact survivors who did not sign a consent form, IPS will apply for Institutional Review Board approval to recontact victims with a future data collection tool.
Essential Issues The competitive nature of American scientific endeavor and the early development of some “turf issues” produced reluctance on the part of some investigators to participate in the master database concept. With guarantee from OSHD that access would be constantly available on a longitudinal basis to those investigators who met appropriately selected criteria, the reluctance was overcome and the tiered master database concept enjoyed uniform support from all groups. A letter was drafted by the Deputy Commissioner of Health that provided ongoing database access to qualified investigators. This guarantee involves the provision of anonymous data files to investigators while OSHD maintains a secure file in which all patients are fully identified. The creation of the tiered database means that all available data for each bombing victim will be cataloged in this single repository with guaranteed access to legitimate investigators. The database itself will simplify future research by its centralizing function while simultaneously relieving individual institutions of the need to maintain separate disaster medical record files for the many research efforts that are certain to follow over time. Efforts to maintain the inclusive nature of the multidisciplinary research study group were carried on throughout the development and operation of the DHSG. These efforts included calls by the DHSG leadership to investigators, institutions, and agencies to emphasize an inclusive approach and encourage participation in the DHSG. A persistent effort was made to make introductions of key individuals, investigators, and resources as they were identified to facilitate networking among all parties. The DHSG members agreed that media contacts would be very limited and offered only through the University Public Relations Office or the on-site daily briefing sessions at the rescue scene.
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ORA and Victim Privacy The Office of Research Administration served as the agency for the political empowerment intended by the Governor when he mandated that the ORA oversee and govern research issues arising from the bombing. The ORA and the IRB both were fully cognizant that neither was empowered to tell another university or research group that they may or may not conduct research dealing with the circumstances of the disaster, if the institution or group was outside of the jurisdiction of the OU IRB. Therefore, Governor Keating’s mandate to the ORA to oversee and govern bombing research issues may have actually exceeded his authority to do so. Nonetheless, since the ORA and IRB were both represented in the DHSG, the Governor’s mandate aided the empowerment of the DHSG early in its course and was greatly beneficial to the coordinating and facilitating activity of the DHSG. The efforts of the ORA and IRB procedural processes were directed toward the standard issues of study design and adequacy of data collection with a concerned scrutiny for the preservation of a compassionate approach to victims and victims’ families. Their approach paid special attention to patient confidentiality and type of victim contact. During the IRB review process, effort was expended to consolidate or combine overlapping studies in order to minimize the number of direct victim or family contacts by research teams. During the early months post-bombing, several calls were made to out-of-state institutions sponsoring disaster-related research to offer assistance in study design, IRB review, and consent and confidentiality issues. The calls were handled with discrete attention to issues of territoriality and local IRB authority and responsibility. Most calls were well-received and resulted in a mutual appreciation of the concerns involved on behalf of research teams from the respective institutions. One encounter between the Deputy Commissioner of Health and a free-lance researcher planning to interview victims without appropriate attention to the details of victim rights, consent, and confidentiality resulted in the prompt departure of the individual involved the same afternoon without collecting any data.
Funding Funding has been meager for the listed studies related to the bombing and is the major reason that studies have become listed as inactive studies (Table 4). Few local investigators had acquired a previous track record of successful funding for disaster research at the time of the bombing. Those most successful at acquiring funding in
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the immediate aftermath were able to attach their disaster research proposal to another current grant proposal somewhat relevant to the proposed post-bombing research proposal, resulting in a grant extension rather than new funding. Another issue related to funding of research proposals was the relative inexperience of most foundations with funding of disaster research. Some foundations requested names of reviewers capable of reviewing disaster research protocols. The DHSG was able to identify independent reviewer lists through the Centers for Disease Control and the US Public Health Association for use by the foundations. Though federal funding was available through the Federal Emergency Management Agency (FEMA), that funding was specifically designated for treatment needs rather than specified for research projects. Some funding was allegedly available to rent computers or pay for temporary labor, neither of which were realistic expenditures for most of the projects within the time limits of the FEMA grants, which ended at 90 days after the bombing. Most charitable trusts and foundations that investigators approached seeking funding had prioritized funding patient treatment plans above other research work. Some investigators were able to merge treatment interests with research by embedding needs evaluation tools such as interviews or questionnaires within their study design.
Feedback Loop Research to determine the medical cost of disasters is relevant material for further disaster research. Evaluative tools such as outreach surveys or interviews are a useful way to measure the impact of a disaster upon a portion of the population in the area exposed to the disaster. As a direct result of surveys related to the bombing, the DHSG discovered there are approximately 90 different languages spoken in the metropolitan area of Oklahoma City. Some of the subpopulations identified had cultural behaviors that could have obscured the cost of postdisaster medical care to those groups. An example was the Vietnamese community of Oklahoma City, members of which seek care almost exclusively from Vietnamese physicians or clinics in their immediate locale. Another was the Hispanic community of south Oklahoma City, which suffered several fatalities and much emotional trauma. Neither of these subgroups would have been included in the cost of care analysis except that victim impact was measured on certain of the research surveys. The survey data triggered further investigation of the methods to determine the actual cost care in these ethnic groups. Contact between an investigator and a victim by sur-
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Table 4. Studies and Research Interests Submitted to ORA Name Mallonee, Sue
Department
Carter, L. Phillip
Oklahoma State Dept. of Health, Injury Prevention Neurosurgery
Bradford, Cynthia Van Vampen, Louann
Ophthalmology Otorhinolaryngology
Stuemky, John
Pediatrics
Gurwitch, Robin
Nixon, Sara Jo
Pediatrics/Child Study Center Pediatrics/Child Study Center Pediatrics/Child Study Center Psychiatry
Pfefferbaum, Betty
Psychiatry
Pfefferbaum, Betty
Psychiatry
Tucker, Phebe
Psychiatry
Tytle, Timothy Hogan, David E.
Radiology Emergency Medicine
Hogan, David E.
Emergency Medicine
Hogan, David E.
Emergency Medicine
Scideman, Ruth
School of Nursing
Boatright, Daniel T.
Public Health
Smith, David
Biostatistics/Epidemiology
Beasley, Stewart
Psychiatry
Adams, Russell L.
Psychiatry
Dingokinski, Eric
Psychiatry
Jones, Herman Lovallo, William R. Nixon, Sara Jo
Psychiatry Psychiatry Psychiatry
Gurwitch, Robin Gurwitch, Robin
Study Title Physicial Injuries and Fatalities Resulting from the Oklahoma City Bombing Neurosurgical Aspects of the Oklahoma City Bombing OKC Disaster—Eye Injuries (records review only) Status of Hearing and Balance Following Blast Exposure Pattern of Injury and Hospital Course of Pediatric Blast Victims (records review only) Oklahoma City Bombing: Risk Identification and Interventions with Young Children Intervention and Risk Assessment for the OKC Bombing Disaster Coping Interventions for Disaster-Related Stress The Oklahoma City Bombing Incident: Risk and Protective Factors in Stress Response Disaster Risk Exposure and Screening in the Oklahoma City Public Schools Disaster Risk Exposure and Screening in DMHSAS clinics Do Physiologic Reactivity or Other Factors Predict PTSD? The Role of Radiology in the OKC Bombing Qualitative Study of the April 19, 1995 Terrorist Bomb Attack in OKC, OK: Assessment of Emergency Department Response Telephonic Qualitative Study of the April 19, 1995 Terrorist Bomb Attack in OKC, OK: Assessment of Survivor Impact Retrospective Descriptive Analysis of the April 19, 1995 Terrorist Blast in Oklahoma City (Records review only) Thematic Analysis of Responses of Children to a Disaster Involving Other Children (review of children’s art work) Prospective Study to Evaluate Potential Changes in Risk Behavior Prospective Study to Evaluate Potential Changes in Risk Behavior The Effects of Using the Mass Media to Reduce Stress Anxiety Immediately Following Certain Catastrophic Events The Neuropsychological Aspects of Acute and Prolonged Stress Induced by Terrorism Book, One Family Under the Same Sky (Children’s art work) Post-Concussive Phenomena with PTSD PTSD Symptoms Related to Blast Exposure Establishing a Registry Database for Long Term Follow-Up
vey or interview comment would sometimes identify the personnel of a particular office or portion of a building in which previously unreported effect of the bombing was occurring. People had begun to seek private counselors through their own initiative that had not been reported in the medical cost accounting process. This information, discovered by focused research studies, was passed on to Project Heartland for screening activity and referral to treatment providers when indicated. These are some ways in which active research has assisted and will
Active/Inactive Active Active Inactive Active Inactive Active Inactive Inactive Active Active Inactive Active Active Active Active Active Inactive Inactive Inactive Inactive Inactive Inactive Inactive Inactive
continue to contribute to determining the full medical and social cost of the bombing.
Research Registry The first round of research studies is now making its way into the literature approximately 18 –24 months after the bombing. A second round of studies addressing safety and structural aspects of building design, personal safety,
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and blast survival skills is planned. A comparative study of various disasters upon the respective medical communities and utilization of medical resources may be of interest to some investigators. The Oklahoma City bombing also provides an opportunity to track a discrete group of blast injury survivors longitudinally in order to attempt to identify the longterm effects of blast injury in survivors. The comprehensive Oklahoma State Health Department database of bombing victims will help to provide the data that may redeem some of the tragedy and loss experienced in our community. Our experience with the DHSG confirms that multidisciplinary disaster research can be initiated promptly after the catastrophic event. Coordination of data preservation, collection, and analysis performed promptly leads to a larger amount of more accurate scientific information gathered from the event. The DHSG found it worthwhile to call together a multidisciplinary group of scientists, public health officials, and rescue organizations in order to provide a check and balance approach that ensured that well-formulated health-related questions were identified. The result of this approach was that well-designed studies were planned that will provide answers to the key questions that have been asked. Time spent in the careful drafting of questions, in establishing effective ground rules, and in attentive assignment of priorities was repaid multiple times over in the scientific credibility of the research now being produced by the group. Disaster research funding suffers from the relative lack of a fast-track mechanism for the initiation of such research. Federal agencies that respond to disasters (CDC, FEMA) and federal agencies that fund medical research (National Science Foundation, National Institutes of Health) should
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consider the development of such a mechanism to aid in evaluating and funding urgent disaster questions for which the usual mechanism of funding will jeopardize the timeliness and quality of the research. Despite the problems encountered and the paucity of funding, a great deal of high quality research has been carried out through the activities of the DHSG. Results reporting has been presented in many scientific fora, and in the near future study results will be published in peer-reviewed journals for a large number of disciplines. Since the impact and effects of disasters cross all lines of science and society, the reporting of results of wellconceived, effectively implemented disaster research studies should also help meet the need for credible conclusions upon which to plan better models for disaster preparedness and intervention.
REFERENCES 1. Lillibridge SL, Noji EK. The importance of medical records in disaster epidemiology in research. J AHIMA. 1992;63:137– 8. 2. Chakraborty AK. Disaster epidemiology and health management. Indian J Pub Hlth. 1992;36:94 –100. 3. Waeckerle JF, Lillibridge SR, Burkle FM, Noji EJ. Disaster medicine: challenges for today. Ann Emerg Med. 1994;23:715– 8. 4. van den Bos A. Mass identification: a multidisciplinary operation. A J Forensic Med Path. 1980;1:265–70. 5. Jordan F. Verbal report. Office of the Chief Medical Examiner, State of Oklahoma. 6. Tayag JC, Punongbayan RS. Volcanic disaster mitigation in the Philippines: experience from Mt. Pinatubo. Disasters. 1994;18:1– 15. 7. Buist AS, Martin TR, Shore JH, et al. The development of a multidisciplinary plan for evaluation of the long-term health effects of the Mount St. Helens eruptions. AJPH. 1986;76:39 – 44. 8. Tanaka K. The Kobe earthquake: the system response. A disaster report from Japan. European J Emerg Med. 1996;3:263–9. 9. Keating, K. Their name. In: Irving, C, ed. Random House: New York; 1995.