Implementing Qualitative Data Management Plans to Ensure Ethical Standards in Multi-Partner Centers

Area of Science:

• Public Health
• Health Equity Research
• Data Management in Research

Background:

• Inadequate data management poses risks, especially in Community-Based Participatory Research (CBPR) with vulnerable populations.
• CBPR offers unique avenues for disseminating research findings and influencing policy, particularly for underrepresented groups.
• Ethical data handling is paramount for protecting participants and ensuring research integrity.

Purpose of the Study:

• To define data boundaries and protections within a CBPR framework.
• To balance ethical standards with data dissemination priorities.
• To explore data management strategies in complex, multi-partnership research involving American Indian communities in Arizona.

Main Methods:

• Community-Based Participatory Research (CBPR) approach.
• Development of specific data boundary definitions and protection protocols.
• Collaboration with American Indian communities in Arizona.

Main Results:

• Established ethical data boundaries that facilitate, rather than hinder, research dissemination.
• Demonstrated that robust data management can enhance opportunities for wide-reaching dissemination.
• Identified strategies for managing data risks in complex partnerships.

Conclusions:

• Prioritizing data management in CBPR strengthens participant protection and research impact.
• Ethical data sharing practices are achievable even in complex, multi-sectoral research collaborations.
• This work contributes to best practices for data management and dissemination in research with indigenous populations.