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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.