1. Benefits of Advocacy Involvement in the Research Setting

Attachment 1

Benefits of Advocacy Involvement in Research Setting

• Advocates/patients have helped to refine the nature of the research question to increase its relevance to research consumers.

• Input from advocates/patients has resulted in expanding the research scope of inquiry.

• The specific disease-related knowledge of advocates/patients has refined the choice of research tools.

• Advocates/patients have aided in expediting recruitment.

• Advocate/patient participation has aided in recruiting disparate groups, leading to greater diversity in the participating population.

• Advocate/patient input has led to a higher level of participation by the targeted research population.

• Research outcomes have been enhanced by advocate/patient input, helping to make research more meaningful to consumers.

• Advocates/patients have improved the data collection process or efforts.

• Advocates/patients have provided an expanded viewpoint during analysis or interpretation of results.

• Advocate/patient participation has improved the usability of research results to consumers.

• Advocate/patient expertise has aided in increasing dissemination of research results to an audience beyond the narrow scientific community.

• Advocate/patient input has assisted in setting funding priorities.

• Advocates’/patients’ unique experience with disease has improved the informed consent process.

• Advocates/patients have improved the participant involvement process.

• Advocate/patient involvement has improved project credibility in both the research and consumer communities.

• Advocate/patient involvement has improved the likelihood of research being funded.

• Advocate/patient involvement has increased the likelihood of ethical review/IRB approval.