Patients are Experts in Their Own Right

Ryan Bailey, MA, Senior Clinical Researcher, Rho

Ryan Bailey, Senior Learning and Performance Specialist, Rho

“How often do we make decisions [in clinical research] without considering the patient’s perspective?” asks Ryan Bailey, senior clinical researcher with Rho, rhetorically as he kicks off a session on “Putting Patient-Centric Principles into Practice” with two of his colleagues from Rho at the ACRP 2017 Meeting & Expo in Seattle May 1.

The realm of health research is full of experts, but “the patient is an expert in their own right,” Bailey says. He explains that patient centricity is such a hot topic now because of such factors as growing patient empowerment through online communities; patients’ expanding self-concepts as consumers who shop for healthcare rather than merely receiving care from the nearest source; and the forces of personalized medicine seeking to target the best possible specialized treatment at the individual level, rather than being satisfied with a standard treatment that does relatively well across a broad population.

Far from being a vague trend, patient centricity is already here, Bailey says, and it means that “research can’t be vastly different from care” and “research should be ahead of the curve” in adapting its practices to feedback from patients at every step in the study.

“I think the case is getting stronger and stronger that patient centricity benefits our key performance indicators” and that soon, the question will not be “how much does this cost [but] how much would it cost not to do this?” Bailey adds.

Moving on to practical applications of patient centricity, Shann Williams, senior director of operations for Rho, notes that the two fundamental concepts tied to the practice are easing patient burden and effective communication to patients and other important stakeholders. For example, she says this includes consideration of study sites being willing to make phone calls after hours, hire culturally competent staff, offer flexible visit scheduling, reimburse patients for transportation and parking, host retention-oriented events, make home visits if possible, and provide quarterly newsletter updates on the study’s progress.

Lastly, Derek Lawrence, senior clinical data manager for Rho, explains that leveraging study data for patient-centric purposes means remembering that “we are all out to answer various questions, but need to keep the patients’ own questions in mind.” The clinical research enterprise is “drowning in data,” he says, but “it’s about getting more mileage out of the data we already have.”

Lawrence adds that not including patients in the discussion of the results of the study in which they participated “is to spectacularly fail them,” and that what patients find most interesting and important should affect how researchers look at the data in turn.

Author: Gary Cramer