‘Concept of time’ keeps the industry from improving patient-centricity
Improving the experience of participants in a trial is one of the core objectives of today’s clinical research industry, and is projected to be one of the main topics of discussion during the upcoming SCOPE Summit that will take place in Orlando, US, next week.
Alicia Staley, senior director of Patient Engagement at clinical trial software services company, Medidata, will participate in a panel entitled, ‘Patient Centricity By Design: Clinical Trial Solutions Designed by Patients For Patients’.
A week before the event, Outsourcing-Pharma spoke with Staley about how the industry is adapting to patients’ needs, as well as about the obstacles in the path to offering a safe and more pleasant journey during a clinical trial.
According to Staley, sponsors’ perspective regarding the design of a clinical trial involves efficient timeframes. “They want the trial up and running, recruited and in process as quickly as possible,” she said.
However, from the patient’s perspective, time represents “something totally different; time represents life”, with the ‘value-of-a-life’ perspective being in conflict with the ‘business’ perspective.
For instance, according to Medidata’s executive, participation in a clinical trial examining metastatic cancer might represent longevity, additional lifetime, or improved life quality for a patient.
“The interests of a sponsor trying to build a trial as efficiently as possible, in terms of time, are in direct contrast to what a patient might need,” said Staley, adding that patients might need ‘a bit of time’ to understand the trial and the value of their participation in it.
Despite the complexities and hurdles in building a patient-centric solution, Staley stated that there has been a fundamental shift in sponsors’ mindsets over the last few years, as more are ‘truly looking’ to build trials based on patient input.
Collection and evaluation of patient input
Asked about the ways that sponsors can adapt their mindset and the clinical trial design to patients’ needs, Staley told us about Medidata’s services that help ‘build a culture’ around patient centricity, by introducing a formal methodology.
Under the company’s ‘Patient Design Studios’, patient advocates and representatives from different advocacy groups across all disease states are invited to participate in two- or three- day ‘intensive design sessions’.
During these workshops, patients have the opportunity to assess the company’s software platforms, such as eConsent, an electronic consent application aiming to automate the patient enrollment process.
By directly asking patients what the application should look like, Medidata aims to bring the patient’s voice into the software development process and ‘humanize’ the technology.
When asked about the feedback received and how the company leverages the same afterwards, Staley cited the example of ‘high-tech prophecy’, where patients ask for services that bring collaborative conversations during their interactions with researchers.
Ultimately, patients are found to ask for technology and solutions that essentially facilitate stronger relations and communication with the research team, and for the ability to request more information, in order to get a better understanding of the clinical trial and its objectives.