On October 13, 2011, AHRQ’s Community Forum hosted a Web conference on Supporting Patient and Consumer Involvement in Patient-Centered Outcomes Research. Drawing from their own work in patient engagement and advocacy, presenters discussed techniques and resources to effectively and efficiently identify patient and consumer representatives; mechanisms to best support and train patient and consumer representatives; and strategies for partnering with patients and consumers in the translation and dissemination of research products.
The panel summary presents techniques and resources to identify patient and consumer representatives to contribute to all phases of research; ways to provide support and training to facilitate their involvement throughout the process; and strategies for partnering with patients and consumers in the translation and dissemination of research products.
- View this Web conference in streaming media format (MP4)
- Download the conference transcript (PDF, 242 kB).
- Download individual slide presentations:
- Danielle Lavallee presentation formats: slides (PDF, 548 kB) or text (PDF, 242 kB)
- Carolyn Branson presentation formats: slides (PDF, 393 kB) or text (PDF, 111 kB)
- Amy Bonoff presentation formats: slides (PDF, 340 kB) or text (PDF, 184 kB)
- Lawrence Sadwin presentation formats: slides (PDF,1.3 MB) or text (PDF, 106 kB)
- Download the panel summary (PDF, 687 kB)
For help viewing accessing the presentations, visit Viewers, Players and Plug-ins.
Ms. Branson is the Consumer Reviewer Administration Manager at SRA International, Inc. and leads the effort to promote and facilitate the participation of consumer advocates who are survivors of cancer and other diseases, illnesses, and injuries in the Department of Defense Congressionally Directed Medical Research Programs (CDMRP). As part of SRA’s Peer Review and Science Management Center, Ms. Branson manages a team of professionals who recruit, assess, train, and support volunteer consumer advocates to ensure that the survivor community’s perspectives are included in the scientific peer review process.
Ms. Branson works with leading consumer advocacy and support organizations to identify and nominate qualified candidates, and interviews nominees to determine those most likely to be successful members of scientific peer review panels. She oversees a mentoring and training program for consumer advocates with minimal scientific or medical backgrounds. Ms. Branson also directs training for scientific review officers regarding the role of the consumer in peer review. Ms. Branson is a member of the steering committee that suggests direction to CDMRP for consumer recruitment and support, and represents CDMRP at national conferences.
Amy Bonoff is a 14-year breast cancer survivor and an active and experienced National Breast Cancer Coalition (NBCC) advocate. Ms. Bonoff is a graduate of the Project LEAD Institute, Quality Care LEAD, and Clinical Trials LEAD. She is also a current member of the Agency for Healthcare Research and Quality (AHRQ) Effective Health Care Program stakeholder group as well as a mentor for the Project LEAD Institute. Ms. Bonoff is co-chair of the NBCC Quality Care Advocate Advisory Committee, she has participated in the Department of Defense Breast Cancer Research Program Programmatic Review, and is a member of the Scientific Advisory Committee of the Susan Love/Avon Army of Women. Ms. Bonoff is a recipient of the San Antonio Cancer Symposium Scholarship, 2007, and is a sought-after speaker on breast cancer advocacy in research, access, and quality care.
Lawrence Sadwin has been a tireless advocate for the American Heart Association (AHA) for more than 25 years, after being diagnosed with heart disease and losing his father to the disease. He has served in nearly every volunteer capacity for the association, culminating with the prestigious national post of Chairman of the Board (2001-2002) -- the chief volunteer executive officer responsible for the overall administration of the association’s business affairs, public relations and development. In addition to his work with the AHA, Mr. Sadwin currently serves as the President for the Friends of the World Heart Federation. He also serves as a consumer stakeholder on AHRQ’s DEcIDE Cardiovascular Consortium, and has previously served as a member on the Council of Public Representatives to the Director of the NIH.
Danielle Lavallee is a Research Director for Center for Medical Technology Policy (CMTP). Dr. Lavallee holds a Ph.D. in Pharmaceutical Health Services Research from the University of Maryland and a Doctor of Pharmacy from the University of Kansas. In her role at CMTP, Dr. Lavallee serves as the Patient and Consumer Alliance Coordinator to ensure the patient perspective is represented throughout the research continuum and that internal methods of patient engagement are continuously assessed and refined. Danielle is part of the AHRQ Community Forum, an initiative led by American Institutes for Research to ensure consistent and comprehensive stakeholder involvement in all aspects of AHRQ’s expanded Effective Health Care Program.