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Table 2 Summary of challenges, opportunities, and recommendations for conducting collaborative epidemiological studies in Puerto Rico

From: Challenges and opportunities in establishing a collaborative multisite observational study of chronic diseases and lifestyle factors among adults in Puerto Rico

Challenges:

• Multiple IRB approvals

• Time-, cost-, and labor-intensive training and retraining of interviewers

• Turnover of interviewers caused uneven recruitment flow and loss of potential interviews

• Perception of long interviews from participants

• Internet connectivity lost occasionally

• Emotional reactions from some participants during sensitive questions

• Re-contacting participants was not always possible

• Errors in data entry and data quality checks

• Extensive process of accessing and abstracting data from medical records

• Specific characteristics of the source population of each site may bias the results

Opportunities:

• Motivation and engagement from partners and interviewers

• Community clinics were easily accessible to participants and had necessary resources

• Ample and positive interest and cooperation from participants, with high completion rates

• Fast recruitment that met target goals in the expected time period

• Standardized methods and questionnaires available (translated and validated in Spanish)

• Extensive data across numerous topics collected in one interview

• Real-time data capturing electronic system

• General trust from participants in the research study and in culturally-sensitive interviewers

• Incentives were appealing; snacks provided were received favorably

• No adverse events reported

• Recurrent process evaluation helped correct issues during the study

• Exhaustive data quality checks corrected any errors and allowed for a clean dataset

• Study established trust, feasibility, training, capacity-building, resources, and expertise

• Multisite recruitment helped increase representation of the population

Recommendations:

• Work in partnership, and consider a multisite approach to increase representation

• All collaborators prepare together written agreements at the beginning of the study

• Leverage existing resources (such as medical records, interview rooms, internet connection)

• Employ well-paid full-time interviewers to support steady recruitment and interview schedule

• Assign site liaisons and senior coordinator to run logistics, administrative tasks, quality checks

• Consider ways to shorten or expedite the interviews and procedures

• Train/retrain culturally-sensitive interviewers frequently; train on sensitivity and friendliness

• Include a pilot period to correct any on-field issues even if questions were pre-piloted

• Schedule weekly or biweekly team meetings for process evaluation

• Record feedback from interviewers and participants, qualitatively and qualitatively

• Conduct frequent checks on recruitment logs and data quality

• Incentive should match scope and effort of participation; these should be clearly conveyed

• Provide additional incentives; i.e.: food, health literature, transportation, or giveaways

• Use electronic data capturing, with paper-based questionnaires as back-up for Internet losses

• Request multiple re-contacting information, and keep updated during the course of the study

• Follow up with participants immediately if they need to complete the interviews later on

• Provide certificates of appreciation or other recognitions to interviewers and partners

• Report results to clinics and the community