Reverse Engineering of Digital Measures: Inviting Patients to the Conversation

Author:

Clay Ieuan,Peerenboom NeleORCID,Connors Dana EORCID,Bourke StevenORCID,Keogh AlisonORCID,Wac KatarzynaORCID,Gur-Arie Tova,Baker JustinORCID,Bull Christopher,Cereatti Andrea,Cormack Francesca,Eggenspieler Damien,Foschini Luca,Ganea RalucaORCID,Groenen Peter MAORCID,Gusset Nicole,Izmailova ElenaORCID,Kanzler Christoph M,Leyens Lada,Lyden Kate,Mueller ArneORCID,Nam JulianORCID,Ng Wan-Fai,Nobbs David,Orfaniotou FoteiniORCID,Perumal Thanneer MalaiORCID,Piwko Wojciech,Ries AnjaORCID,Scotland Alf,Taptiklis Nick,Torous JohnORCID,Vereijken BeatrixORCID,Xu Shuai,Baltzer LaurenzORCID,Vetter Thorsten,Goldhahn JörgORCID,Hoffmann Steven CORCID

Abstract

Background: Digital measures offer an unparalleled opportunity to create a more holistic picture of how people who are patients behave in their real-world environments, thereby establishing a better connection between patients, caregivers, and the clinical evidence used to drive drug development and disease management. Reaching this vision will require achieving a new level of co-creation between the stakeholders who design, develop, use, and make decisions using evidence from digital measures. Summary: In September 2022, the second in a series of meetings hosted by the Swiss Federal Institute of Technology in Zürich, the Foundation for the National Institutes of Health Biomarkers Consortium, and sponsored by Wellcome Trust, entitled “Reverse Engineering of Digital Measures,” was held in Zurich, Switzerland, with a broad range of stakeholders sharing their experience across four case studies to examine how patient centricity is essential in shaping development and validation of digital evidence generation tools. Key Messages: In this paper, we discuss progress and the remaining barriers to widespread use of digital measures for evidence generation in clinical development and care delivery. We also present key discussion points and takeaways in order to continue discourse and provide a basis for dissemination and outreach to the wider community and other stakeholders. The work presented here shows us a blueprint for how and why the patient voice can be thoughtfully integrated into digital measure development and that continued multistakeholder engagement is critical for further progress.

Publisher

S. Karger AG

Subject

Health Informatics,Computer Science Applications,Medicine (miscellaneous)

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