Koski explained that “patients are at the core of these efforts. The Patient Empowerment Initiative is intended to provide a “home” for multi-stakeholder sharing of concerns, experiences and challenges encountered in patient engagement, as well as the design and pilot-testing of best practices…”
CAMBRIDGE, Mass. December 19, 2017
Dr. Greg Koski, President and CEO of the Alliance for Clinical Research Excellence and Safety (ACRES), announced today the roll-out of the ACRES Patient Empowerment Initiative, aligning diverse stakeholders across the clinical research community—including patients, regulators, pharmaceutical companies, research sites, contract research organizations, suppliers, ethics committees—to integrate multiple efforts currently being conducted to bring the patient voice to clinical research.
Patient centered research has become a core issue for all in healthcare and clinical research but the achievement of this goal has been hampered in part by the large number of stakeholders, with often competing interests, in the research enterprise, leading to isolated patient programs with limited impact. Another issue has resulted from historically not viewing patients as equal participants in the research process, seeing them just as research subjects rather than as co-creators in research.
ACRES, an alliance-based non-profit organization operating in the public interest, is dedicated to building a comprehensive, integrated global system for clinical research. As such, it works to bridge and unify improvement efforts of various stakeholders striving to enhance quality, safety, integrity and operational effectiveness of biomedical product development and health research.
In announcing this initiative, which has been under development for nearly two years, Koski explained that “patients are at the core of these efforts. The Patient Empowerment Initiative is intended to provide a “home” for multi-stakeholder sharing of concerns, experiences and challenges encountered in patient engagement, as well as the design and pilot-testing of best practices and other tools that serve both patients and all other clinical research stakeholders.”
ACRES systems approaches lay the foundation for a comprehensive, integrated approach to patient engagement. ACRES will roll out this patient initiative in the 1st Quarter 2018, with an all-stakeholder Steering Committee, including strong patient representation, which will establish and prioritize topics for discussion and action. Based upon these recommendations, Working Groups will be established by 2nd Quarter 2018.
Dr. Mary F. Tobin, Special Advisor to the President and CEO, will serve as the ACRES liaison to the PEI. “When we first started this effort, we thought it would be straightforward. We soon learned that patient engagement means very different things to different stakeholders, and that understanding a variety of world views would be essential”, said Dr. Tobin. “This is not about getting more patients to enroll in clinical trials. It is about understanding how we can more effectively empower patients to engage meaningfully in every part of this critically important endeavor.”
Dr. Tobin created the original vision of this initiative with the help of the late Jack Whelan, a remarkable patient and research advocate who fought fearlessly for patients, and Dr. Dawn Richards, a tireless Canadian patient advocate working with Clinical Trials Ontario. Additional ideas and support have been provided by Maya Zlatanova, CEO of FindMeCure, based in the United Kingdom.
Individuals interested in learning more about this initiative or becoming involved should contact Dr. Tobin directly by e-mail at mtobin(at)acresglobal(dot)net or through http://www.acresglobal.net.
Alliance for Clinical Research Excellence and Safety (ACRES)
The Alliance for Clinical Research Excellence and Safety (ACRES) is a non-profit alliance working in the public interest. Bringing together stakeholders spanning the clinical research ecosystem to build an open, integrated global system based in principles of Accountable Research™, ACRES adapts lessons from industries successfully implementing principles of systems and safety engineering, such as transportation, communications and information technology. For more information, please contact Mary F. Tobin, PhD, Special Advisor to the President and CEO at mtobin(at)acresglobal(dot)net.
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