Unleashing the Power of Feedback
October 25, 2017
This recommendation proposes the development of platforms and communities where participants can freely share their experiences without compromising trial integrity.
Existing efforts to improve clinical trial participant experience and satisfaction do not take advantage of the ways in which patient feedback can improve the overall transparency, interactiveness, and inclusivity of the treatment development system. There is a significant movement afoot to systematically involve people, including patients (persons with personal experience of living with a condition or illness), caregivers, and patient advocates among others, throughout the treatment development cycle. Importantly, many stakeholders are working on creating feedback mechanisms for patients who become clinical trial participants so that feedback might be used to better integrate patient needs, perspectives, and priorities into all aspects of clinical trial functioning, from beginning to end (see below).
Our vision is that a 21st century treatment development system must be transparent, interactive, and inclusive.
Our solution is to have specially designed public fora so that participants share feedback throughout their trial experience which would then be released incrementally on in order to maintain trial integrity. For some treatments this could mean posting feedback once a trial’s findings have been publicly released or once a drug has received regulatory approval; for other lower risk trials, feedback might be shared in real time. Sponsors and trialists should conceive flexible trial designs that encourage feedback and do not compromise new ways of conceiving trial design that encourage feedback and do not compromise trial integrity.
Participants are the most important stakeholder in the treatment development system; without them the entire research enterprise crumbles. The vast majority are accustomed to sharing their lives on multiple platforms, expressing opinions about products and services, and providing feedback about tech bugs and problems; so, it’s only natural that they should look for a similar opportunity when they participate in clinical trials. Unleashing participant feedback has the potential to improve the participant trial experience, thereby reducing participant attrition and attracting more participants. Importantly, it brings much needed transparency and responsiveness to the system.