Enesha M Cobb1,2, William Meurer2,3, Deneil Harney2, Robert Silbergleit2, Bray Patrick Lake4, Christina Clark5, Debbie Gipson6, William Barsan2. 1. Department of Veterans Affairs, VA Center for Clinical Management Research, Ann Arbor VA Healthcare System, Ann Arbor, Michigan, USA. 2. Department of Emergency Medicine, University of Michigan, Ann Arbor, Michigan, USA. 3. Department of Neurology, University of Michigan, Ann Arbor, Michigan, USA. 4. Clinical Trials Transformation Initiative, Duke University, Durham, North Carolina, USA. 5. Foundation for Interdisciplinary Motor Neuron Medicine, Metamora, Michigan, USA. 6. Department of Pediatrics, University of Michigan, Ann Arbor, Michigan, USA.
Abstract
OBJECTIVES: The conference objectives included educating patients and advocates about clinical trials, educating the clinical research community about patient perspectives on participating in clinical trial design, and identifying strategies to increase participation in clinical trial design for neurological disorders. DESIGN: Observations were noted during a 1-day conference attended by patients, patient advocates, clinical trial staff, and investigators. The conference offered didactic sessions, small, and large group discussions. PARTICIPANTS: Conference participants were patients, patient advocates, clinical trial staff, students, and investigators interested in engaging patients in clinical trial design for neurological disorders. MEASURES: Conference participants were asked to consider lessons learned that could increase patient engagement in clinical trial design. RESULTS: We found that there is growing interest in including patients in the design of clinical trials for neurological disorders. Several themes emerged on how to move forward: networking; the multifaceted roles of advocates in research; training and education; creating patient-researcher partnerships; and clinical trials regulation issues. CONCLUSIONS: The conference provided a forum for dialogue regarding stakeholder engagement in the design of clinical trials for neurological disorders. This experience provides a template for replication and dissemination of this conference and informs next steps to accelerate the pathway from dialogue to action.
OBJECTIVES: The conference objectives included educating patients and advocates about clinical trials, educating the clinical research community about patient perspectives on participating in clinical trial design, and identifying strategies to increase participation in clinical trial design for neurological disorders. DESIGN: Observations were noted during a 1-day conference attended by patients, patient advocates, clinical trial staff, and investigators. The conference offered didactic sessions, small, and large group discussions. PARTICIPANTS: Conference participants were patients, patient advocates, clinical trial staff, students, and investigators interested in engaging patients in clinical trial design for neurological disorders. MEASURES: Conference participants were asked to consider lessons learned that could increase patient engagement in clinical trial design. RESULTS: We found that there is growing interest in including patients in the design of clinical trials for neurological disorders. Several themes emerged on how to move forward: networking; the multifaceted roles of advocates in research; training and education; creating patient-researcher partnerships; and clinical trials regulation issues. CONCLUSIONS: The conference provided a forum for dialogue regarding stakeholder engagement in the design of clinical trials for neurological disorders. This experience provides a template for replication and dissemination of this conference and informs next steps to accelerate the pathway from dialogue to action.
Authors: Juan Pablo Domecq; Gabriela Prutsky; Tarig Elraiyah; Zhen Wang; Mohammed Nabhan; Nathan Shippee; Juan Pablo Brito; Kasey Boehmer; Rim Hasan; Belal Firwana; Patricia Erwin; David Eton; Jeff Sloan; Victor Montori; Noor Asi; Abd Moain Abu Dabrh; Mohammad Hassan Murad Journal: BMC Health Serv Res Date: 2014-02-26 Impact factor: 2.655