Table 8.

Opportunities for Improvement and Possible Interventions to Address Them in Clinical Research Processes

Identified Opportunity	Potential Intervention
Motivation
Altruism as motivation for participation Compensation as second order motivation for participation Free healthcare as motivation	Consider role of altruism in planning recruitment, retention, and conduct Moderate the emphasis on compensation in recruitment Guard against undue influence; facilitate access to available alternatives
Informed Consent
Some participants under estimate risk Participants do not understand the research study plan “Diagnostic Misconception” that screening tests equal a clean bill of health	Develop means to test and enhance understanding of study risks and requirements of participating Reconstruct informed consent to address the limitations of study related testing
Study Conduct and Retention
Participants desire, but do not receive their clinical results	Implement standardized procedures to share clinical results with participants
Participants desire, but are not informed of the results of the research study in which they participated	Evaluate ethical issues relative to sharing overall research results Where appropriate, develop and test standard procedures for sharing overall research results with participants
Positive impact of professional and organized conduct by staff Negative impact of unprofessional or disorganized conduct by staff	Educate research teams on the impact of professionalism on participants’ experiences and willingness to continue in studies. Develop metrics for quality review and improvements on key items such as courtesy, respect, timeliness, and organizational workflow.
Under-appreciated value of ‘research partnership’ to participants	Explicitly acknowledge and respect role of participant as essential partner in research process