A Patient-Centered Value Proposition for Research Participation and Data Sharing

The clinical research recruitment problem is a design problem. Recruiting enough participants has long been a challenge for clinical trials. Eighty percent of trials face delays because of insufficient enrollment. Logistical barriers play a role, but they are only part of the picture. Recruitment challenges also reflect a system designed largely around the needs of research professionals, with less attention to the people it is meant to serve.

A stronger value proposition for patients makes the benefits of participation as clear as the risks and creates an experience that gives back to the people who make clinical research possible. The research enterprise already knows a great deal about why people participate, what they perceive as valuable in research, and how they want to be communicated with. There is a real opportunity to put that knowledge to work. 

In this report, we synthesize the evidence on the motivators, benefits, communications, and barriers that shape decisions to join research and affect the value people assign to research participation. We then outline ten strategies to put the evidence to work for patients in three areas: responding to their goals, personalizing communications, and using technology, including AI, to improve their engagement. Together, these strategies offer a path to fundamentally shift the value proposition for patients and move clinical research from an endeavor people must be persuaded to join to one they actively seek.