NWT RESEARCH DATABASE

Regions: Inuvialuit Settlement Region, Gwich'in Settlement Area

Tags: health, health care evaluation, aboriginal community, public health, specimen collection

Objective(s): To develop a comprehensive approach to investigating community health problems related to H. pylori infection in NWT communities and to identify public health solutions that respond to community health care needs as perceived by community members and health authorities.

Project Description: This research aims to answer questions posed by NWT community members and their health care providers. The long term objectives are to develop a comprehensive approach to investigating community health problems related to H. pylori infection in NWT communities and to identify public health solutions that respond to community health care needs as perceived by community members and health authorities. Community Participation and Knowledge Exchange Community participation in the research process and sharing resulting knowledge with community members are cornerstones of accepted standards for conducting research in Aboriginal communities. This project incorporates the principles of the Association of Canadian Universities for Northern Studies (ACUNS) and the Canadian Institute for Health Research's Institute for Aboriginal People's Health. As an Network Environments for Aboriginal Health Research co-investigator, Dr. Fletcher will oversee the incorporation of these standards in this research. Because community participation and knowledge exchange are mutually supportive, these dimensions of the research will operate from start to finish. The Study Planning Committee has decided how to recruit participants, which supplemental biologic specimens (e.g., blood or stool) to collect, and how to implement data collection. This committee provided input for and approved the informed consent documents and research questionnaires. A series of workshops were held to carry out these activities. As information is generated by the research, activities have been developed to inform the community of the results and help them understand how to use this information to safeguard individual and community health. The Study Planning Committee has provided input on how to develop communication media for sharing information with the community. Data Collection Procedures Standard data collection procedures were developed for informed consent, participant recruitment, questionnaire administration, obtaining data from medical records, biologic specimen collection, transport of samples to Edmonton laboratories, training of personnel on data collection procedures, laboratory analyses, data management and data quality control. A manual of procedures was prepared under Dr. Goodman's supervision to outline each procedure. Community coordinators in Aklavik carried out the local project activities, as well as transport of specimens and transfer of data to Edmonton. Research coordinators based in Edmonton were trained on data collection procedures by study investigators and in turn trained the Aklavik community coordinators and any participating Aklavik health centre personnel. The research coordinator periodically travels to Aklavik to monitor the quality of data collection. A project manager works closely with Dr. Goodman to oversee study operations and the management of study data. The project manager maintains a central database with all study data. The data will be accessible to the research team members and the Study Planning Committee. Data on Clinical History, Symptoms, and Relevant Social and Environmental Factors: Participants have been interviewed using a structured clinical questionnaire regarding previous diagnoses of H. pylori infection or other diseases of the stomach or esophagus, previous treatments for H. pylori infection, frequency of symptoms of upper abdominal discomfort, and other indications for H. pylori testing or endoscopy (reflux, anemia, dark stools, loss of appetite, recent weight loss). In addition, relevant information will be taken from participants' medical records. Another questionnaire has been used to interview participants about social and environmental factors. Questionnaires were based on those developed previously by members of the research team, adapted for the local population. Interviews were conducted in private and lasted approximately 20-40 minutes. Residents of Aklavik are actively involved in planning and implementing this project. The study design and implementation is being overseen by a local Study Planning Committee. The PI seeks input from this committee to finalize the details of project implementation, approve the forms, questionnaires and other materials to be used, and develop strategies for communicating study information to the community. Several residents of Aklavik have been recruited to coordinate the field work and help with recruitment of participants and data collection, with training provided as necessary. As Inuvialuit Regional Corporation has invited the principal investigator to complete similar research in the rest of the lnuvialuit communities, they have set up a regional planning committee to inform the design and implementation of this study. Representatives from each community in the Inuvialuit Settlement Region (ISR) are included on this regional committee, and they will oversee research in the ISR in the same manner that the Aklavik committee oversees the research in their community. This research addresses a health priority identified by residents of Aklavik and leaders of other ISR communities, who are aware that H. pylori infection poses a health threat to them. NWT health officials have heard their concerns and support this project so they can find solutions to this community health problem. Few community-based studies of H. pylori infection have been conducted in Canada, and there is no systematic information specific to the NWT. NWT health officials lack information regarding the extent of the problem or cost-effective solutions. This project will fill this gap by providing for ISR residents: information about who is at risk of H. pylori infection and associated diseases and what measures might be taken to promote community health. In addition, endoscopy of the upper digestive tract has been offered to those desiring diagnostic evaluation in Aklavik, and the individual endoscopy results have been delivered in person to participants and local health care providers, with follow-up arranged as needed. Treatment for H. pylori infection has been offered to those requiring treatment. Beyond these benefits to individuals, this project will permit laboratory studies which will provide information about potentially effective treatments and cost-effective strategies for management of this infection by local health authorities. Study Planning Committee workshops in Aklavik have been developing strategies for communicating study information to community members, with particular consideration to targeting groups such as youth and elders. Throughout the project, information has been disseminated to the community by means of radio broadcasts, flyers, and progress reports. One new strategy that is underway involves the creation of a video documentary, now completed, to convey to the community how the research has been carried out within the community and remotely at the University of Alberta. Communication in the other lnuvialuit communities will take place through each of their community corporations, as well as through methods to be identified by the study planning committee. Strategies to communicate results with other communities will be done in collaboration with the regional planning committee, primarily through each community corporation. The fieldwork for this study will be conducted from January 3, 2014 to December 31, 2014.