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Table 1 DISH Community and Stakeholder Engagement and Impact on Study Procedures

From: The Durham Initiative for Stomach Health (DISH): a pilot community-based Helicobacter pylori education and screening study

  Initial project ideas Final project processes Impact of Study
Stakeholder meetings
 Input from health services & community- based researchers One-on-one meetings with select faculty Roundtable meeting with experts from throughout the continuum of community outreach to policy implementation Group feedback enhanced a bigger-picture thinking of the overall goals, towards which the current project would be a first step
 Input from community Development of a steering committee Work with established community advisory councils Capitalizing on already existing relationships with the community is pragmatic and feasible
 Input from clinicians Focus groups with clinicians One-on-one meetings with clinicians Clinicians have little time, so arranging one-on-one meetings on their schedules is more practical
Study planning
 How to approach potential study participants Meet with church pastor Meet with church pastor; present during Sunday services; meet with congregants Importance of meeting the congregation and introducing the topic personally, and presenting the project as a cancer prevention strategy rather than focus on disparity
 How to describe the study Study flyer Study flyer, study brochure, in-person meetings at the church to explain the project Interacting with potential study participants in multiple ways allows for an iterative process to best share study information
Participant recruitment
 Location Clinics Community (at a local church) Individuals are most comfortable at sites they frequent and trust
 No. of events and sites Multiple dates and sites One-day event on site at one church Scaling down to for ease of execution and assessment of logistics
 Date and timing of event Sunday after services All-day Tuesday prior to evening services Provides flexibility for potential participants
 Consent In-person consent Electronic + in-person consent To make the event logistics work more smoothly, make as many tasks available to be completed prior to the day of event as possible
 Study enrollment In-person enrollment Online + in-person enrollment (see above)
Study event
 Questionnaire Potentially relevant gastric cancer risk factors, plus detailed lifestyle variables Shorten as much as possible - remove religiosity questions, but add questions to help think about long-term implementation Participants need to feel that the questions are reasonable, not invasive (like religiosity questions), but that also get to the larger issues of beliefs/behavior, physician interaction, and finances
 Biospecimen Collection Breath test, blood draw, stool sample Breath test and blood draw The stool sample would not have added significantly more information, but would create an additional barrier to participation.
 Participant reimbursement Amazon gift card Walmart gift card plus boxed meal, social security number waiver received Walmart was favored by this community; participation during lunch or dinner hour highlighted importance of boxed meal; requiring a social security number provides an additional barrier.
Follow-up
 Individual results No return of individual results Results mailed to participant with an accompanying phone call by study team within 2 weeks of study event There is value and need to give back to participants. Follow-through includes: staff phone-calls to results, patient navigators provided to those with financial barriers, and physician executive summary to inform guideline-concordant H. pylori treatment.
 Re-testing No re-testing Follow-up events at church to re-test after treatment There is documented ~ 30% failure of H. pylori treatment to eradicate; re-testing allows us to re-visit the community, confirm eradication or to support seeking of salvage treatment.