Kristin Kinlaw

Director of Communications at PMG Research

Patient Voice: Asking and Listening to the Patient

Successful clinical trial recruitment requires a thorough understanding of the target patient profile, and a key factor within this profile is patient motivation. What drives a patient to consider, then subsequently inquire, prescreen, and finally consent and participate in a trial? While these motivations will vary by previous research experience, indication or condition, study type, patient demographics, and other elements, common themes often emerge when one speaks to patients directly about their reasoning. The lesson? Always ask the patients. Their reasons can surprise even the most seasoned clinical research professional.

A series of interviews were conducted in the spring of 2018 as a pulse-check on existing hypotheses around what motivates the people who chose to participate in multiple trials (not concurrently, of course). Seven patients (4 men, 3 women) from five sites within the PMG Research integrated site network were interviewed by phone. Expansion to a larger patient population is planned for Q318 to validate the common response themes that have been identified

Patients looking for a better course of treatment

The interviews ultimately validated the theory that while participants are driven to consider research for various personal reasons, a primary reason remains a dissatisfaction with the current course of their condition and a motivation to find something better. However, only two of seven patients interviewed were told about clinical research by their physician (who also happened to be the Principal Investigator on the study referenced); the others sought it out on their own. Even when aware that the study may have a placebo component, uncomfortable procedures, or inconvenient visit schedules, the overall research experience outweighed the discomforts for many.

When asked what advice they would give to someone considering research for the first time, the response was an overwhelming “Do it!” With a positive experience behind them, participants can become the strongest  advocates for clinical research, and they can often offer insights into small improvements in trial design that can make the difference between a consent and a decline; between completion and drop-out; between compliance and lost to follow-up.

The importance of positive personal interaction

The importance of the experience with the study team – from the receptionist, to the phlebotomist, to the research coordinator and investigators - cannot be overstated. It is because of these meaningful relationships that patients choose to look past the challenges and find ways to participate. This is not to say, however, that a positive relationship at the site level can make up for a protocol that was not designed with the patient in mind. One must wonder how many tertiary and exploratory endpoints caused patients to say “Too many needles!” while begging for a functioning e-diary during a long-term outcomes study.

As research professionals and innovators we have a call to improve the clinical research ecosystem and implement truly patient-centric trials; we must listen to the suggestions – even those given tongue in cheek – from those without whom we’d have no trials all.

For more information on how PMG Research, part of ICON Site & Patient Recruitment engages with patients to improve the patient experience and engagement contact Kristin Kinlaw, Director of Communications at PMG Research at [email protected].

Patient Voice

Read our article to explore motivations & perceptions of experienced research participants