DIA and the Clinical Trials Transformation Initiative (CTTI) conducted a joint survey in 2014 with multiple stakeholders to:
- Assess types of relevant patient organizations by querying a representative sample across disease states to highlight distinctions among their missions, reach, infrastructures, governance models, and interest and engagement in clinical trials
- Identify current research sponsor and investigator practices for engaging with PGs, and practices used by patient groups to engage with research sponsors and investigators around clinical trials
- Explore successes and failures to identify models of engagement with PGs that have led to more quality-driven and efficient trials
- Formulate recommendations and opportunities for implementation of best practices with PGs, academia, and industry that will lead to more efficient and successful clinical trials
The survey elicited feedback from 244 respondents and examined current practices and perceptions among the different stakeholders about the value of, and barriers to, successful patient group engagement in clinical trials. The raw data from the survey has been summarized and published:
Sophia K. Smith , Wendy Selig, Matthew Harker, Jamie N. Roberts, Sharon Hesterlee, David Leventhal, Richard Klein, Bray Patrick-Lake, and Amy P. Abernethy. Patient Engagement Practices in Clinical Research among Patient Groups, Industry, and Academia in the United States: A Survey. PLOS ONE. 2015.