Clinical Management of H. pylori Infection for Indigenous and Northern Communities in Canada: Guidelines Developed from CANHelp Research

Community H. pylori (Hp) projects conducted by the CANHelp Working Group during 2007- 2018 generated local evidence of relevance to clinical decision-making about Hp infection in Arctic Indigenous communities. We used this information to adapt current Canadian guidelines for northern and Indigenous populations in Canada. Following the guidelines, we present the context and rationale for their development. Because evidence is limited for many of the recommendations we present, due weight should be given to the individual patient’s motivation, values, preferences, and circumstances

Community-driven Epidemiologic Research: Guiding Principles

Increasingly, public health research standards call for engaging communities who live with health issues under investigation to help ensure that results translate into effective public health measures. Here, we share guiding principles for community-driven epidemiologic research developed over a decade conducting research sought and controlled by participating communities. These principles provide a roadmap for epidemiologic research that effectively addresses community priorities while meeting academic standards: research questions are developed collaboratively in community-university partnerships; knowledge takes shape from information donated by participants through methods that turn information into scientifically useful data and analysis that reveals data patterns that address research questions; thus, knowledge is generated collaboratively by academic researchers and community partners; academic researchers are bound by ethical, professional, scientific, contractual, and other legal standards to be responsible stewards of information donated by participants; community review protocols ensure that interpretation and presentation of research results reflects the voices of all partners; meaningful community review creates the trust needed for open access to research results as required of academic researchers; all partners share credit for achievements. Lacking models for operationalizing these principles, we developed specific guidelines for research project initiation, data use, authorship, acknowledgment, and data dissemination. Conventions in academia present formidable challenges to effective community engagement and are often at odds with calls from community organizations and funding agencies to conduct research driven by community priorities and values. We hope others can benefit from time and effort we have spent crafting solutions that bridge this divide

Changes in Gastric Pathology after H. pylori Treatment in Community-Driven Research Aimed at Gastric Cancer Prevention

Community-driven projects have characterized Helicobacter pylori (Hp) infection in Indigenous communities in the Northwest Territories (NT) and Yukon (YT), Canada. These projects address concerns about the frequent diagnosis of Hp infection among community members and its relation to gastric cancer deaths, perceived to occur with alarming frequency in this region. Projects included breath-test screening for Hp infection, gastroscopy with gastric biopsies, and treatment to eliminate Hp infection. Previous project results showed a high prevalence of stomach pathologies associated with increased cancer risk among Hp-positive participants at baseline. This analysis describes changes in precancerous gastric pathologies in project participants who had gastroscopy before baseline treatment during 2008–2013 and again in 2017. Throughout the study period, the same pathologist graded Hp density, active gastritis, chronic gastritis, atrophic gastritis, and intestinal metaplasia using the updated Sydney System. Of 310 participants from three communities with baseline pathology data, 69 had follow-up pathology data. Relative to baseline, the prevalence of Hp infection and precancerous gastric pathology was substantially lower at follow-up; most participants who were Hp-positive at baseline and Hp-negative at follow-up had reduced severity of active, chronic, and/or atrophic gastritis at follow-up. Though follow-up numbers are small, these results yield evidence that successful Hp treatment has the potential to reduce the risk of gastric cancer in Arctic Indigenous communities

CANHelp Working Group Project Description and Agreement Form

This form is used by CANHelp Working Group staff and trainees to request permission to initiate a project they will lead, within the broader research program. The purpose of this document is to ensure staff and trainees receive appropriate guidance in developing projects, and to ensure that all necessary senior staff and management are aware of the project and provide input and approval

CANHelp Working Group Research Agreement Template

The agreement template was created by the CANHelp Working Group to facilitate developing research agreements between academic and community research partners. The first version was created in 2011, and has been modified for use in 9 community-driven research projects in northern Canada. The document helps guide early discussions between partners on how the research will be carried out, and facilitates partners articulating their expectations. It is not intended as a legal document

CANHelp Working Group Data Request Form

This form is used by the CANHelp Working group staff and trainees to request datasets for analysis from the Data Quality Lead (staff in charge of managing the databases). The purpose of this document is to ensure staff and trainees receive appropriate guidance in developing their data analysis plans, understand how they may use data, and receive feedback on their analysis plans from relevant project staff

Early experience with unsedated ultrathin 4.9 mm transnasal gastroscopy: A pilot study

BACKGROUND: Unsedated transnasal gastroscopy is a technique with unverified clinical advantages

Statement on Stewardship and Dissemination of Knowledge Generated Collaboratively in CANHelp Working Group Community Projects

This document is used by the CANHelp Working Group to guide their community-driven research program. The document includes the sections of: guiding principles, research project guidelines, investigator agreement, data use guidelines, data user agreement, authorship guidelines, acknowledgement guidelines, data dissemination guidelines, data preparation procedures, and data analysis procedures. The purpose is to ensure all CANHelp Working Group staff and trainees adhere to community-driven research principles

Helicobacter pylori infection in Canada’s arctic: Searching for the solutions

The Canadian North Helicobacter pylori (CANHelp) working group is a team composed of investigators, health officials and community leaders from Alberta and the Northwest Territories. The group’s initial goals are to investigate the impact of H pylori infection on Canada’s Arctic communities; subsequent goals include identifying treatment strategies that are effective in this region and developing recommendations for health policy aimed at management of H pylori infection. The team’s investigations have begun with the Aklavik H pylori Project in the Aboriginal community of Aklavik, Northwest Territories