Global Cross-Industry Collaboration Continues Sharing Outputs to Improve Research Access
SAN DIEGO, April 25, 2023 (GLOBE NEWSWIRE) -- The Decentralized Trials & Research Alliance (DTRA) today has announced the release of Patient Journey Maps to help researchers understand participation considerations and burden and to maximize patient inclusion, diversity, and participation in research.
The Team comprised leaders in patient experience in clinical research who chose three areas for initial focus: Oncology, Rare Disease, and Vaccines. These journeys are the result of conversations with patients along with lessons learned from industry leaders implementing decentralized research methods.
“The patient journey maps can be used as guidelines for others in the industry to find ways to truly embrace the patient perspective when it comes to decentralized clinical trials,” said Alicia Staley, Vice President of Patient Engagement at Medidata and Co-Lead of the DTRA Patient Journey Map initiative. "This was an amazing opportunity to collaborate with diverse partners throughout the clinical research industry, and gain a wide range of perspectives and ideas. Our team delivered a unique set of patient journey maps across three different therapeutic areas, which will enhance access and engagement in clinical trials.”
The Patient Journey Maps as well as a blank template to be used for any therapeutic area are now available to the global research community at www.dtra.org.
By visualizing the decision points that patients face in their treatment and clinical research experience, study teams can fully appreciate and anticipate the patient journey. With this information, researchers can then select the right designs and tools to support participation. The maps help demystify what methods to consider, and how that may differ across patient demographics and disease states. Using Patient Journey Maps ultimately helps trial teams with their decision making by providing examples to catalyze their thinking. The initiative team also created a template for teams to begin with a patient journey for their own study design and decision making. Together these tools support the idea of patient-centered design, and the need to consider patient experience as part of trial design and conduct.
"Even though each patient is an ‘n of one’, the DTRA Patient Journey Map initiative was an opportunity to thoughtfully consider the unmet needs, quality of life impacts, and preferences of those mulling over clinical trial participation,” shared Richie Kahn, former Senior Director of Patient Success at Medable and current Co-Founder & Principal at Canary Advisors and Co Lead of the initiative. "By better aligning clinical trial protocols with patient wants and needs, we can reduce the time it takes to bring promising, new therapies to the patients that need them most."
“We have successfully identified the patient journey for incorporating Decentralized Clinical Trials (DCTs) in clinical trials. This groundbreaking project utilizes a collaborative approach, incorporating diverse perspectives from multiple stakeholders, including patients, to optimize three distinct therapeutic trial types,” said Deena Bernstein, Vice President of Customer Success at DataCubed Health and Project Manager for the DTRA Patient Journey Map initiative.
Having reached this milestone, the comprehensive maps serve as a valuable resource for all stakeholders when considering the implementation of tools to improve research access including decentralized methods in clinical trial designs. Accessible and free to all on the DTRA website, this user-friendly tool empowers users to customize the maps for their own unique needs, paving the way for a more thoughtful and intentional approach to clinical trials.