While the term “patient centricity” is skyrocketing up the buzzword tote board like a hot Billboard Chart single, it won’t be much more than lip service unless the clinical trial industry makes concrete efforts to engage patients in all components of the trial process, says Dr. Michelle Longmire, CEO and cofounder of Medable.
Longmire and team just launched a Patient Advisory Council (PAC) to advise Medable and its biopharma customers on ways to improve patient access, experience, and outcomes in clinical trials.
“One big goal is to make clinical trials a more desirable form of healthcare,” Longmire says. “We have a long way to go [as an industry] to get the patient voice” into the clinical trial arena, she adds.
Among its members, the Medable PAC is working closely with T.J. Sharpe, a Stage IV melanoma cancer survivor and patient advocate who will be a repeat speaker at ACRP conferences with his upcoming presentation for ACRP 2020. He was diagnosed in August 2012 with melanoma tumors in multiple organs, only four weeks after his second child was born. Since then, he has undergone six surgeries and four immunotherapy treatments over two different clinical trials.
Though the PAC is in the early stages, Longmire says a few patient concerns are already coming into focus. For example, patients are frustrated after a trial when they don’t hear anything about their project.
“We talk about informed consent, but what about informed outcomes?” asks Longmire. “One of our big early takeaways is people want to know more about the outcomes of their trials. Patients want to know how other groups did, if the therapy is successful, and what’s happening after the trial.”
Patients First: Building Compassion in Research
Join patient advisor T.J. Sharpe, Jennifer Byrne of Javara Inc., and Dr. David Zaas of Duke Raleigh Hospital at ACRP 2020 this May in Seattle for a candid conversation about building compassion into clinical research. At times, the role of patients in clinical research can get lost in the day to day tasks of a trial. Learn how clinicians can build compassion into their work and bring more awareness to clinical research and opportunities that exist for patients.
Medable has a standing monthly meeting with the PAC, but Longmire says the interactions are more common and informal. “We check in with them and individual members a lot—not only on technology, but also workflows” and how those impact trials, especially decentralized ones, she adds.
“I see a momentum for change” to better integrate the patient voice into clinical trials and treat those patients more as partners and less as subjects, Longmire says.
Author: Michael Causey