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).
Feedback mechanisms can improve clinical trials and participants’ sense of inclusion and ownership of the research process, but they don’t give participants a public voice. Sponsors and trialists have long feared that public expression of clinical trial experiences would put trial integrity at risk. While this concern is understandable, it’s both belated and shortsighted. Belated, because in the absence of dedicated, public fora for
expression, participants who are accustomed to crowd-sourced user reviews like Yelp and Healthgrades are using social media and other outlets to discuss trial experiences; and companies are mining those expressions through social listening. Shortsighted, because public fora for trial participant feedback is a vital missed opportunity for the sustainability of a treatment development system.
A 21st century treatment development system must be transparent,
interactive, and inclusive.
UNLEASHING PATIENT FEEDBACK WITHIN THE TREATMENT DEVELOPMENT SYSTEM SERVES THREE IMPORTANT GOALS:
improve through iteration based upon their feedback (e.g., every new version of the iphone); so, they are beginning to expect the same from all aspects of healthcare.
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 can also bring much- needed transparency and responsiveness to a system that is currently an unknown to so many Americans.
Anderson, M. & McCleary, K. (2017). On the path to a science of patient input. Sci Transl Med, 8 (336), 1-5.
MDIC. (2015). Section IV: Potential Use and Value of Patient Preference Information in the Product Development Lifecycle. In MDIC Patient Centered Bene t-Risk Project Report. Retrieved mdic.org