IQVIA Releases Report: Empowering Patient-Driven Research to Improve Patient Outcomes
The Essential Role of Patient Organizations in Improving Patient Outcomes
The landscape for patient advocacy organizations is changing radically as these groups increasingly become the critical connectors and conveners of healthcare transformation and the development of innovative, breakthrough therapies. This is reflected in the fundamental shift from developing drugs and treatments for patients to developing drugs and treatments with patients.
Today, patient advocacy organizations are helping to close the gap between the rapid advances in science and human biology understanding and the slower progress seen in most other parts of the health system. The vital role of patient organizations is manifested in multiple ways, ranging from the translation of scientific breakthroughs to improve available therapies through patient-centered drug development to getting those therapies to the patients who will benefit from them. The involvement of patient groups is also critical in the development and use of diagnostics, the embrace of digital technologies, and the development of meaningful datahubs or registries to securely accumulate data. Furthermore, patient organizations have important roles to play in the development and application of artificial intelligence (AI) and machine learning (ML), the increased focus on tackling the fundamental issues of disparities and racism, the redesign of care delivery and flexibility in site of care and shaping the regulatory environment in which all of this takes place.
To further advance the understanding of the changing role of patient advocacy organizations in healthcare transformation, the IQVIA Institute for Human Data Science, in conjunction with IQVIA Healthcare Solutions, convened an invitation-only summit for patient organization leaders held on December 1, 2021, and titled Patient Advocacy Summit – Helping Nonprofit Organizations Support Patients through Advocacy-Led Research and Data Initiatives. The event brought together more than 100 participants along with 28 speakers from patient organizations and foundations to participate in thought-provoking conversations, to explore ideas and best practices around relevant and timely patient-driven research and health data topics, and to consider ways to empower patient advocacy organizations. In addition to invited speakers from these organizations, the summit also included experts from IQVIA who drew upon their experience in applying unparalleled data, technologies, and capabilities to advance the success of patient advocacy organizations in meeting the needs of their members.
Providing an overview of the major themes and key takeaways from the sessions at the summit and outlining the essential role of patient organizations in improving patient outcomes, the full summary can be found here
