Health Promotion International, Vol. 16, No. 2, 169-177,
June 2001
© Oxford University Press 2001
Canadian Aboriginal communities: a framework for injury surveillance
Department of Public Health Sciences, Division of Social Medicine, Karolinska Institute, Norrbacka, Stockholm, Sweden
Address for correspondence: Anna Marta Auer, Box 35, Suite 216, RR2, St Albert, Alberta, Canada T8N 2B1, E-mail: aauer{at}sprint.ca
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SUMMARY |
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 TOP SUMMARY INTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSACKNOWLEDGEMENTSREFERENCES |
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At the international level, evidence supports the position that regardless of whether a country is industrialized or less developed, vulnerable populations living in poor social conditions are at disproportionate risk of injury. The Aboriginal population of Canada is one such vulnerable population. In addition to poor social conditions and marginalization related to historical injustices, this population is faced with the challenge of working with little or no descriptive injury data relevant to the community level. It has been and continues to be a significant barrier to the adoption and implementation of injury prevention strategies and programs. Recognizing that surveillance is an intrinsic component of public health practice, this study was undertaken to address a critical data gap facing Aboriginal communities. The objective of the study was to develop the conceptual design of an injury surveillance framework that would be culturally relevant, that is ‘acceptable and owned by the target population’, and would meet the specific requirements for injury data and data collection methods for the study population. The methodology was undertaken with focus groups at national and community levels, and relied on the use of strategic activities such as benchmarking, guided discussions, nominal group technique exercises and critical document reviews. The process of benchmarking served to identify that injury surveillance systems described in the literature, linking data to action, are not a predominant reality. The locus of control is often removed from the population of interest and resides primarily with experts under the jurisdiction and control of designated authorities. In order for the surveillance system to have cultural relevance, the focus group identified that the locus of control must be defined by the population of interest at the community level, and that the system must be germane and flexible to consider the local environment. The Aboriginal framework proposed places the locus of control with the community, in partnership with its data sources. Surveillance activities remain largely distinct from communities of interest, leading us to consider whether structural changes can serve to promote a link between data and action. Traditional or standard surveillance systems, by virtue of their structure, promote a disassociation between information and community action. Data management under the complete jurisdiction of sources external to a community appears to obstruct potential linkages between information and action.
Key words: Aboriginal; community-based; injury surveillance; safety promotion
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INTRODUCTION |
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TOPSUMMARYINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSACKNOWLEDGEMENTSREFERENCES |
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At the international level, evidence supports the position that regardless of whether a country is industrialized or less developed, vulnerable populations living in poor social conditions are at a disproportionate risk of injury (WHO, 1988
). The Aboriginal population of Canada is one such vulnerable population. It represents ~4% of Canada's total population and bears a significantly disproportionate risk of injury and illness (MacMillan et al., 1996). Despite Aboriginal health care being a federal responsibility, a significant disparity exists between Aboriginals and the overall Canadian population. In 1990, a report on the health status of the registered Indian population of Canada reported injury as the leading cause of death in all age groups from 1–64 years (Mao et al., 1992). The challenges involved in addressing the injury problems of Aboriginal Canadians are numerous and complexly interrelated. Three main issues related to these challenges are briefly noted.
The first issue relates to culture and its historical relationship to health status. The impact of colonialism, pre- and post-1876, is well recognized as a major factor related to the loss of tradition, lifestyle and culture among Canada's Aboriginal peoples. It was not until the Indian Act of 1876 was passed that the government formally recognized Aboriginal heritage. This brought Aboriginals, and subsequently the Inuit, under federal responsibility and jurisdiction in 1939. This federal responsibility is administered through provincial and territorial health services (Newbold, 1998). Canada's Aboriginal population has historically been managed or ‘controlled' by others in the areas of health, education and social services. In recent years, this historical perspective has been publicly acknowledged by both Aboriginal and non-Aboriginal leaders, and has contributed to efforts towards self-government or self-determination. The concepts of collaborative community partnerships and community empowerment, therefore, hold unique relevance for health promotion practice within Aboriginal communities (Tookenay, 1996; Morgan et al., 1997). Although these concepts are not unique to the practice of health promotion, they have unique applicability from a cultural perspective.
The second issue of note is the geographic location associated with many Aboriginal reserve-based communities. The location of these communities often determines the level of available service and access to health care.
The third issue of key relevance relates to general health data. Although the need and demand for data are high, the availability and quality of health data remain limited (Mao et al., 1992). Obtaining national trend data is complicated given the previously noted issues: cultural complexities associated with the historical management of Canada's Aboriginal population; variations in the administration of provincial and territorial health services; community access issues associated with geographic location; and community level capacity with respect to the availability of human resources.
Injury surveillance complexities in varied environments
The absence of an alternative to standard or ‘traditional’ surveillance systems is a significant impediment to prioritizing injury issues and programs. In the case of Canada's Aboriginal population, the lack of descriptive injury data at the community level, in addition to poor social conditions and marginalization associated with historical injustices, has been and continues to be a significant barrier to the adoption, implementation and evaluation of injury prevention strategies and programs. Although there are some mandatory requirements for the reporting of health data associated with reserve-based Aboriginal populations, data are reported somewhat inconsistently. This latter, data-related issue places Aboriginal communities, striving for self-government, in a position of having to manage their injury problem largely in the absence of injury data. Available data are usually dated, non-descriptive for the context in which injuries occur, and are aggregated for the purpose of generating provincial/territorial and national level reports. Reserve-based Aboriginal communities are therefore unable to determine what portion of the provincial or territorial injury profile represents their community. Generalizations derived from available injury data often have little or no relevance at the community level.
As outlined, the geographic location and size of communities plays a significant role in determining level and access to care. Socioeconomic as well as environmental living conditions manifest in a range of unique health service delivery patterns and infrastructures. And just as health service patterns vary, so does the human and financial capacity of communities to collect injury data. Lastly, the issue of historical injustices underpins all other issues. These injustices are integral to the cultural framework of Canadian Aboriginals. A surveillance system can be neither imposed nor adapted without the express approval and direction of the population. The need to support healing and reconciliation between Aboriginals and non-Aboriginals, cultural revitalization, and the ability to exercise power are fundamental strategies associated with reclaiming nationhood (Royal Commission on Aboriginal Peoples, 1996).
The literature dealing with the development and use of injury surveillance systems within communities is limited. A large proportion of the literature on injury surveillance systems in general deals with determining whether existing data sources have the capability to monitor injury problems without creating a new system, examining existing surveillance systems to determine whether modest reconfigurations would serve to meet injury data needs, and investigating whether existing surveillance systems have the capacity to undertake surveillance on specific injury issues, such as firearm and violence related injuries. Literature discussing injury surveillance at the local or community level often refers to the importance of surveillance as a component of prevention activities and programs. It is of interest to note, however, that even when surveillance is reported as an integral component of an injury prevention program, the surveillance component of the program remains largely the domain of the health sector, and that developments in injury surveillance have relied on ‘experts’ (Kopjar et al., 1992; Ytterstad, 1995; Ytterstad and Sogaard, 1995; Lindqvist et al., 1996).
Study objective
Recognizing that surveillance is an intrinsic component of public health practice, this study was undertaken to address a critical data gap facing Aboriginal communities. The objective of the study was to develop the conceptual design of an injury surveillance framework that would be culturally relevant, that is ‘acceptable and owned by the target population’, and that would meet the specific requirements for injury data and data collection methods of the study population. The study examined the distinct needs, living environments and viewpoints of Aboriginal reserve-based communities, with a population base of 400–6000 residents, as key dimensions in the design of an injury surveillance system. Differences between expert and non-expert parameters and viewpoints were anticipated. The nature of these differences and how they would influence the design of the system, however, were unknown.
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METHODS |
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TOPSUMMARYINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSACKNOWLEDGEMENTSREFERENCES |
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Given the population's long standing history of ‘being controlled,’ planning and development processes were undertaken within a participatory research framework. Agenda setting, planning and implementation were structured to promote partnerships, capacity building and sustainability. Injury surveillance was viewed as a mechanism to promote the ‘capacity of groups or communities to act collectively to exert control over the determinants of health’ in this case to promote action on injury (WHO, 1986
). Given that the focus of the study was to develop an injury surveillance model that would be ‘culturally relevant’, a community-driven approach was taken to ensure cultural legitimacy.
The methodology relied on the use of strategically guided activities, undertaken with focus groups at national and community levels. These focus groups were facilitated and supported by a research group providing developmental and technical expertise. Steps central to the development process were organized based on well established planning guidelines reported in the literature, from establishing objectives through to promoting active use of the injury data for prevention purposes (Graitcer, 1992; Declich and Carter, 1994; Buehler, 1998; Laflamme et al., 1999).
The national focus group consisted of three subgroups. The first subgroup was composed of representatives from the funding body supporting the study initiative as well as representatives from national Aboriginal organizations. Participation of the latter was considered important to build support for the promotion and long-term endorsement of the system. The second and largest subgroup consisted of Aboriginal community-based practitioners from across Canada, who had been instrumental in identifying the need for injury data at the community level. The third subgroup was composed of ‘injury data experts’. These participants had international, national and community-based experience related to injury surveillance.
The overall purpose of the national focus group was to establish consensus on the conceptual framework that would guide the further development of the injury surveillance system. Building on the work of the national focus group, a community-based focus group, consisting of team members from the first of four pilot communities, subsequently undertook the development of the operational elements of the surveillance system. The overall purpose of the community-based focus group was to develop and test the surveillance system, within the context of its intended environment by its intended target group. Specific activities associated with the community-based focus group involved: establishing safeguards to protect confidentiality; developing community-based protocols for data handling and storage; establishing training requirements; pilot testing both the data collection instrument and the overall system; and developing recommendations for standardized community reports. This paper focuses on describing outcomes associated with the national focus group, which underpinned the subsequent development of operational elements and guidelines. Strategic activities of the national focus group involved benchmarking and critiquing three injury surveillance systems reported in the literature, defining general criteria for an injury surveillance prototype, and proposing injury data elements.
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RESULTS |
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TOPSUMMARYINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSACKNOWLEDGEMENTSREFERENCES |
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Injury surveillance benchmarking
Injury data experts identified for participation in the national focus group were consulted for guidance on determining injury surveillance benchmarks. Based on the feedback obtained, the identification of benchmarks was conducted by examining the operational mandates of various surveillance systems. Factors considered and investigated were: intended purpose; type of system; data classification system utilized; lead responsibility for data collection and analyses; data collection processes; current uses of the system; and future goals or direction. Three injury surveillance systems, from the literature, were identified for further review and consideration by all members of the national focus group. Injury surveillance systems benchmarked for best practices were from Canada (Canadian Hospitals Injury Reporting and Prevention Program, CHIRPP), the USA (Indian Health Services, Injury Surveillance, IHSIS) and Australia (National Minimum Data Set for Injury Surveillance, NMDSIS).
Defining general criteria for an injury surveillance prototype
The national focus group was led through a structured group activity which generated a list of criteria identified as necessary for meeting the specific injury surveillance requirements of reserve-based Aboriginal communities. Nine specific descriptors were generated. Responses of the focus group, consisting largely of non-experts, were compared with expert evaluation criteria reported in the literature (Colwell, Jr and Smith, 1990; Graitcer, 1992; Declich and Carter, 1994; Teutsch, 1994). Figure 1 illustrates the high level of congruency between non-expert descriptors and expert criteria.
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Subsequent to the identification of these descriptors, the focus group was asked to rate the relative importance of each of the generated attributes. The focus group, however, indicated that they were unable to rate the descriptors, as all criteria were considered to be of equal importance. Although the focus group indicated that they were unable to rate the relative importance of descriptors generated, when non-expert descriptors were compared with expert criteria, simplicity, acceptability and timeliness emerged as three predominant criteria. Simplicity was associated with the process of data collection as well as analyses and timely reporting. Acceptability of the surveillance system by the focus group was linked to the system being available in both manual (paper) and electronic (computer) formats, the ability of the system to link data to action, and data being timely and placed in the hands of the community as soon as possible. The dual platform was specifically identified in order to address the requirements of smaller, resource-limited, reserve-based communities. A manual format was considered feasible for communities working with a small population (400–2000 residents) and without access to computers.
Defining injury data elements
Following the focus group's development of general criteria for an injury surveillance prototype, the group was asked to generate a list of essential injury data elements. Initially, a lengthy and comprehensive list of data elements was generated. The list was generated based on the interests of the group to obtain specific information about injuries resulting from prescription drug and solvent abuse, falls, motor vehicle collisions, suicides, and injuries among young children. A further review of the list, guided by the nine descriptors generated earlier, resulted in the focus group departing from a comprehensive to a minimal dataset approach. The minimal dataset approach was endorsed with a view to avoid elaborate data collection, coding procedures and data analyses, which were deemed counterproductive to achieving simplicity, acceptability and timeliness. Subsequently, six attributes emerged as minimum dataset design priorities. The dataset to be developed was to do the following.
- Contain core data elements that would identify the person injured (inclusive of information such as age and gender), describe the location where the injury was sustained, date and time when the injury occurred, and provide information on the nature and severity of the injury.
- Include descriptive information on the circumstances associated with the injury incident, related to factors such as alcohol use and environmental factors, such as poor road conditions.
- Provide information on injury outcomes, indicating whether the injured person received medical treatment, was hospitalized or died.
- Document whether preventive measures such as seat belts and smoke detectors were in use.
- Combine a simple checklist approach with descriptive narrative fields.
- Allow for basic analyses and report generation at the community level by the community.
These design criteria are consistent with criteria proposed by Graitcer (Graitcer, 1992), with the key exception that data elements associated with cause of injury and diagnosis were not constrained to the use of International Classification of Diseases (ICD) codes. The focus of concern for practitioners was that data elements capture the ‘best information possible’ on injuries. The utilization of a particular coding structure appeared to hold little relevance for community-based practitioners, other than its relationship to ensuring a rich data source. Subsequently, dataset design priorities helped focus discussions and guide the critique process.
Critiquing benchmarked injury surveillance systems
Following the development of minimum dataset design priorities, three injury surveillance systems, which had previously been benchmarked CHIRPP, IHSIS and NMDSIS, were examined further (Colwell Jr and Smith 1990; Harrison and Tyson, 1993; Morrison et al., 1999). The purpose of the critique process was to examine, reflect and gain knowledge about various surveillance systems. The critique process was structured by examining whether with or without modifications a system could be adapted for use by reserve-based communities. This served to focus participants on the strengths, weaknesses and desirable elements and characteristics associated with surveillance systems. Three major observations were generated as a result of this examination. First, it was noted that the benchmark of injury surveillance promotes ‘follow-up linked to action’. The predominant reality, however, was identified as being a predisposition toward information dissemination, which remains largely disassociated from action. Secondly, systems tend to rely on ‘designated sources external to a community’ for data analyses. Data and its management, therefore, are subject to being driven by externally controlled factors. Thirdly, data collection relies heavily on high levels of sophistication, i.e. comprehensive data variables, elaborate coding schemes, highly trained individuals and sophisticated analyses.
As a result of the focus group's examination of benchmarked injury surveillance systems, two decisions were taken: the first was not to adapt or modify a system in current use, and the second, to consider the strengths of the systems reviewed, for consideration within an Aboriginal injury surveillance model. Following the critique, additional focus group discussion resulted in design priorities being refined further. Attributes of a culturally relevant system were defined as requiring data analyses and management being carried out within the community, and data collection being flexible, allowing for multi-site and multi-disciplinary data collection.
The critique process and an elaboration of reserve-based requirements served to highlight that the benchmark of injury surveillance as described in the literature, linking data to action, is not the predominant reality (Figure 2) (Graitcer, 1992; Klauke, 1992; Buehler, 1998; Halperin and Horan, 1998; Robertson, 1998; Laflamme et al., 1999). The locus of control is independent of the population of interest, and resides primarily with experts under the jurisdiction and control of designated authorities. In order for the surveillance system to have cultural relevance, the focus group identified that the locus of control must be defined by the population of interest at the community level, and that the system must be germane and flexible to local environments. The Aboriginal model proposed places the locus of control with the community in partnership with its data sources.
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DISCUSSION |
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TOPSUMMARYINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSACKNOWLEDGEMENTSREFERENCES |
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Comparability and validity
Although a high level of congruency was evident when comparing expert evaluation criteria, injury data elements reported in the literature and focus group injury surveillance design criteria, incongruencies were noted regarding the level of importance assigned to particular issues. A notable incongruency related to the issue of comparability. Although highly desirable and advocated by data experts in the group, the issue of comparability did not appear as high a priority for community-based practitioners. The primary concern of practitioners was that the system should have the capacity to collect meaningful data sufficient to describe the magnitude and nature of a community's injury problems, and to monitor community-based injury trends. Despite discussions outlining the benefits of comparability, community-based practitioners remained focused on ‘local’ needs and issues related to internal rather than external validity. The abilities to compare injury rates and to interface with larger datasets were not primary considerations from the practitioner perspective. Overall, the next stage or operational development phase was directed by the national focus group, to consider elements supportive of facilitating an interface with larger datasets, without compromising primary needs for simplicity, acceptability, timeliness and flexibility. Moreover, community-based practitioners clearly identified the need to consider ‘local’ environments. Specifically, the medical management of injured patients would require special consideration in the development of operational elements and guidelines.
Data collection and data sources
As previously noted, the medical management of injured patients from reserve-based communities varies based on factors such as geographic location, size and isolation, social and economic infrastructures, and health service providers internal and external to the community. As such, flexibility, as a design element, was considered primary to the viability of an injury surveillance system for reserve-based communities. Specifically, Aboriginal community-based practitioners identified the need for the system to allow for multi-site and multi-disciplinary data collection. The issue of flexibility was driven by descriptions of medical service patterns, potential data sources and collection practices, considered more consistent with developing countries. For example, drowning-related deaths simply may not be documented within a hospital registry as these cases do not always receive care within a hospital facility. Death may occur before access to care is provided due to geographic isolation and/or service capacity affecting access and the level of care available. Within such environmental contexts, accessing relevant information and data collection practices are dependent upon key informants and a range of service providers and practitioners.
Cultural relevance and acceptability
Another dimension associated with flexibility was defined as allowing for the addition or modification of data elements at the community level. For example, should a community demonstrate a specific injury problem such as motor vehicle related injuries or poisonings, additional data elements relevant to the problem could be incorporated into the dataset. Alternatively, a minimal dataset could be developed to obtain more comprehensive information on any specific injury problem. The paramount strength of the Aboriginal injury surveillance framework is that its end users and intended target group determined its design. The criteria developed are not unique, as evidenced by the congruency of non-expert descriptors and evaluation criteria reported in the literature. The development process, however, was unique within the Canadian context as it engaged Aboriginal practitioners and injury data experts in a collaborative design process. The process provided a bridge linking community realities with research expertise, fostering acceptability of a system designed to meet the needs of the target population. The participatory research framework received support, as it sought to promote a process driven by Aboriginals for Aboriginals, which was viewed as supportive to building capacity for self-determination.
Limitations
The uniqueness of the proposed ‘Aboriginal injury surveillance model’ and its inherent design attributes, however, does not necessarily make the system immune to potential limitations. Potentially, personnel coming from various disciplines, diverse educational backgrounds, and varied levels of educational preparation can significantly influence data collection. Multi-disciplinary and multi-site collection also suggests that consistency in data collection practices will require particular attention. Skill levels and resources specific to any given community will impact on data consolidation, analyses and interpretation. In addition, with the locus of control being the community, the role of data dissemination will assume a reverse relationship to traditional or standard surveillance systems. Rather than data sources reporting back to the community, the community will undertake the role of working with, and reporting back to, its data sources. Moreover, data management becomes the unique domain of the community. As such, data management issues such as confidentiality, data storage and handling, and report generation become the jurisdiction of the community. Other limitations of the proposed system relate to the quality of data, the ability to compare data over time, and the ability to compare or interface with larger datasets at treaty, provincial/ territorial or national levels.
Implications for practice and research
The quality of data will be subject to such factors as skill levels, the availability of regular training, the ability to conduct data audits, and staff turnover at the community level. Although issues related to the quality of data are not unique to the management of any dataset, they may be particularly significant when the system relies on a small pool of resources. Generally, a large dataset relies on a larger pool of human and financial resources, while a small community is likely to rely on a few key individuals and/or service providers, and limited financial resources. Essentially, a small community has a higher degree of vulnerability when experiencing such issues as staff turnover. Sustaining the management of an injury surveillance system, therefore, assumes significant relevance for reserve-based communities. These issues lead one to hypothesize that the quality and comparability of data at the community level are likely to require different evaluation parameters than those practiced with larger datasets. Consideration will need to be given to achieving balance between the need for reliable injury data, and community mobilization and programming efforts.
Some communities, by virtue of social, economic, cultural and geographic distinctions, are likely to have divergent challenges related to health data. Further study is required to determine whether divergent variances are the norm for subpopulations within developed countries or whether a higher degree of variances should generally be expected, with injury surveillance being conducted at local levels. If an injury surveillance system is to be germane and flexible to local environments then alternative approaches must be considered in order to address the injury data requirements of communities.
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CONCLUSIONS |
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TOPSUMMARYINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSACKNOWLEDGEMENTSREFERENCES |
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A critique conducted of injury surveillance benchmarks demonstrates that surveillance activities remain largely distinct from populations of interest, leading us to consider whether structural changes can serve to promote a link between data and action. Traditional or standard surveillance systems, by virtue of their structure, promote a disassociation between information and community action. Data management under the complete jurisdiction of sources external to a community appears to obstruct potential linkages between information and action. The Aboriginal injury surveillance model proposes that community action begin through community ownership and management of its injury surveillance system, in partnership with data sources. Non-traditional and alternative approaches to injury surveillance must be considered if communities working with a scarcity of injury data are to manage their injury problem.
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ACKNOWLEDGEMENTS |
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TOPSUMMARYINTRODUCTIONMETHODSRESULTSDISCUSSIONCONCLUSIONSACKNOWLEDGEMENTSREFERENCES |
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The authors gratefully acknowledge: the First Nations of Canada and their partners in health who shared their knowledge and expertise with this study; the First Nations and Inuit Health Programs Directorate, First Nations and Inuit Health Branch, Health Canada for project funding; and the Alberta Heritage Foundation for Medical Research for researcher support. A special acknowledgement is extended to former staff of the Injury Prevention Centre of Alberta and Dr G. Trueblood.
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