Advancing Models of Partnership between Patient Organizations and Shared Data Networks
Kristin Schneeman, Director, FasterCures
FasterCures, a center of the Milken Institute, the People-Centered Research Foundation (PCRF), and the National Evaluation System for Health Technology Coordinating Center (NESTcc) have embarked on a collaboration to better integrate patient perspective and participation, as well as patient-generated health data, into the growing landscape of shared data networks. This collaboration—the first of FasterCures’ new series of Acceleration Labs—will identify and describe models of partnership between patient organizations and research networks that are supporting the creation, use, and diffusion of evidence generated in disease-specific data platforms and in large, disease-agnostic data networks. The effort will also clarify the value of such partnership models in bringing patient perspective, experience, and data into the research process.
Clinical innovation—the development, approval, dissemination, and monitoring of new drugs, biologics, and medical devices—is in a period of rapid change. Researchers, product developers, government, patient organizations, and other stakeholders aim to accelerate medical research and innovation using all available data. While data resulting from randomized controlled trials remain the gold standard for efficacy research, there is now an increased emphasis on effectiveness and new opportunities for use of real-world data from electronic health records, mobile health devices, claims, and other sources. As part of this change, there is an emerging focus on the importance of engaging with patients in the definition of research questions and meaningful outcomes, as well as a re-examination of the role of patient-supplied data within the expanding yet still fragmented data ecosystem.
A vital actor in supporting the goal of a patient-centered medical research and innovation system is patient organizations. Patient organizations have a wide range of goals, capabilities, and resources, but at their core they have been established to help current and future patients by raising awareness, ensuring robust investment in medical research, and supporting innovation and access to effective preventive and treatment interventions. These patient organizations have funded discovery research, preclinical and clinical studies, and in some cases created new data repositories to support and advance research in their respective areas.
With the emergence of shared data networks and the investment patient organizations are making to advance medical research, it is an important time to develop models for what mutually beneficial and productive partnership can look like between patient organizations and shared data networks.
FasterCures Acceleration Labs deploy our unique capabilities to convene traditional and non-traditional partners to advance promising ideas in biomedical research and development to real-world implementation. Acceleration Labs are miniature think tanks in action, designed to devise new business models, capital structures, policy frameworks, or medical and financial technologies with the goal to move from research to results.
This initiative will be guided by an advisory group that includes, in addition to the three collaborating organizations, patient-driven organizations that have a significant investment in supporting research and creating data resources. Project advisors include:
Gina Agiostratidou, Director of the Type I Diabetes Program at the Leona M. and Harry B. Helmsley Charitable Trust;
Rachel Fleurence, Executive Director of NESTcc;
Kathy Hudson, Executive Director of PCRF;
Todd Sherer, CEO of the Michael J. Fox Foundation for Parkinson’s Research; and
John Wilbanks, Chief Commons Officer at Sage Bionetworks and a FasterCures Senior Fellow.
As part of this project, FasterCures will create a typology of patient partnership models that incorporate the wide range of mutual needs and competencies across both patient organizations and shared data networks. We hope that the creation of generalizable frameworks and a shared vision of successful partnership will benefit many in the R&D ecosystem seeking to use a broad array of types of data to get to better answers to questions that matter to patients.
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