9:20 - 10:50 amSaturday, September 6
LK 304
Workshop: The PCORI Engagement Rubric
LK 304
Workshop: The PCORI Engagement Rubric
Engagement Officer, Patient-Centered Outcomes Research Institute
Professor, Stanford Center for Research in Disease Prevention
Ph.D., Assistant Investigator, Group Health Research Institute
Patient Investigator, SIMBA
Research Director, Stanford Prevention Research Center
Assc. Dir., Diabetes Prevention Program
Health Promotion and Research Administrator
Deputy Director of Patient Engagement, Patient-Centered Outcomes Research Institute
In this session for both researchers and patients,  leaders from the Patient-Centered Outcomes Research Institute (PCORI) will share how their Engagement Rubric helps them connect with the patient community.... Read more

Description

In this session for both researchers and patients,  leaders from the Patient-Centered Outcomes Research Institute (PCORI) will share how their Engagement Rubric helps them connect with the patient community.  PCORI engagement specialist will describe the creation of the rubric, include an interactive training session, and end with a panel discussion with selected PCORI-funded project teams (the PIs and Patient Partners).  The purpose is to demystify what engagement in research is and to offer concrete examples of how patients and researchers can partner in research. 

Kimberly Bailey, MS, is an Engagement Officer at the Patient Centered Outcomes Research Institute (PCORI). She acts as a liaison between Engagement and Science as active portfolio management is carried out.

Before joining PCORI, Bailey was research director and program director for health system improvement at Families USA, a national nonprofit advocacy organization committed to securing quality, affordable health care and coverage for all Americans. She led Families USA's work on payment reform, delivery reform, and quality improvement, and provided quantitative and policy analysis on a range of healthcare issues. In addition, Bailey served as a PCORI reviewer and reviewer mentor, a member of the Patient Engagement Advisory Panel, and a member of the PCORI Evaluation Group.

Bailey holds a BA in planning, public policy, and management from the University of Oregon and an MS in health policy, planning, and financing from the London School of Economics and the London School of Hygiene and Tropical Medicine.

Dr. Randall Stafford's research aims to advance scientific understanding of the forces that influence physician and patient behavior, with a focus on evaluating and modifying physician and patient practices to improve health outcomes through prevention. Dr. Stafford's objective is to further develop the science of health care innovation as a mean for understanding current patterns of health care and as a vehicle for designing interventions to facilitate the adoption of evidence-based practices by patients, their care providers, and health care systems. This research agenda is reinforced and stimulated by an array of clinical and teaching activities. His clinical work in general internal medicine and preventive cardiology provide a rich observational experience that guides my research, as well as a context for applying clinical insights derived from my research. His educational activities involving undergraduates through post-doctoral fellows provide numerous opportunities to excite future clinicians and researchers about a population-based perspective.

An epidemiologist and 10-year veteran of the Fred Hutchinson Cancer Research Center, Dr. Wernli joined Group Health Research Institute (GHRI) in 2009 and began a three-year career development award in comparative effectiveness research in 2010. The award’s rich coursework, mentorship, and training opportunities support her goal of answering key questions related to cancer screening and diagnostics.

She is now leading a Patient-Centered Outcomes Research Institute (PCORI) contract to compare breast MRI (magnetic resonance imaging) to mammography for women already treated for breast cancer. There is little evidence to support the use of breast MRI for surveillance when physicians are looking for second breast cancers or recurrences of the first cancer. She is working with the Breast Cancer Surveillance Consortium (BCSC) to evaluate these two technologies. Also through the BCSC, Dr. Wernli leads a study using data on more than 800,000 women aged 40 to 79 to determine if mammographic breast density is linked to the risk of developing ovarian cancer. Additionally she is a co-investigator of GHRI’s Colorectal Cancer Screening Registry, which is part of the National Cancer Institute’s Population-based Research Optimizing Screening through Personalized Regimens (PROSPR) program. 

Dr. Wernli serves as a reviewer for several journals, including the American Journal of Epidemiology andCancer Epidemiology, Biomarkers & Prevention. A longtime member of the American Society for Preventive Oncology (ASPO), she was a recipient of the Prevent Cancer Foundation/ASPO Cancer Prevention Fellowship in 2009 and served as co-chair for the annual meeting workshop with their Young Investigators.

Dianne’s love of coffee, walking the dog, gardening and hiking are a reflection of living in the Seattle area all her life. Her career path has included time as a programmer for the Boeing Company, self employment as consultant and the past 15 years as an Outreach Minister in a Lutheran congregation - advocating for malaria work in Africa and on behalf of the homeless community in Renton, leading teams to Tanzania, organizing service event One wouldn’t imagine that participating in a Women Walk for the Cure event would lead to a role in a study grant for Breast Cancer Imaging. Dianne had participated to mark the movement of being a cancer patient to a celebration of life. At the walk there were fliers announcing a focus group the following week concerning imaging post treatment. Out of gratitude for the benefits received by the participation of patients before her, Dianne agreed to participate. It was a pleasant surprise to later be asked to work as a patient investigator if the grant proposal was accepted. In the fall of 2013 the adventure began as fund was granted and the work of including patients in that work was to be explored. In the past year the role of Patient Investigator has grown to include informing other team members about experiences from a patient perspective, participating in the planning of upcoming meetings and focus groups, attending focus groups and being an advocate for those who have shared their stories and to presenting findings to the Advisory Board and Stakeholders Board. It has been a great experience to use the many skills learned in other jobs and combine them with work that will shape the medical care for women post treatment.

Dr. Rosas work experience includes conducting case management and health education with migrant farmworkers and their families, coordinating a rural migrant health program, and working in Mexico as a research fellow with the Population Council. Most recently, she served as the community outreach and translational research coordinator for the Center for Children's Environmental Health Research (CCEHR) at UC Berkeley. Her dissertation research examined the disparity in childhood obesity among children of Mexican descent by taking a binational (US-Mexico) approach. Dr. Rosas continues to investigate the disproportionate prevalence of overweight among children of Mexican descent by critically examining the acculturation hypothesis and investigating other promising avenues. Her research falls into four areas: (1) understanding the complex interactions between migration, acculturation and socioeconomic status and their influence on childhood obesity; (2) investigating modifiable early-life risk factors for overweight among children of Mexican descent; (3) identifying policies that are effective in curbing the childhood obesity epidemic among Mexican Americans; and (4) examining factors related to childhood overweight in Mexico. Immigrant health research rarely takes such a binational approach; however, taking into account the context in the country of origin is crucial for fully understanding the determinants of health outcomes in immigrant populations in the US.

Jan Vasquez is the Associate Director of the Diabetes Prevention Program Director (DPP) at the Indian Health Center of Santa Clara Valley (IHC). Jan directs several DPP projects and research grants. Through Jan’s leadership and vision, IHC’S DPP has been the recipient of 8 National Awards. Jan is currently Co-Investigator on a PCORI grant focused on addressing the impact of historical trauma on American Indian people. In addition, Jan is currently pursuing a Master of Public Health degree at North Dakota State University, the only MPH in the nation offering a program specializing in American Indian Public Health.

Ramin Naderi is the Health Promotion and Research Administrator at the Indian Health Center of Santa Clara Valley (IHC). Ramin founded the IHC Wellness Center in 2002. What began as a school project has now touched over 10,000 community members in Santa Clara Valley and has changed the feeling of hopelessness in the American Indian community, to one of hope where all are welcomed, treated with respect and can journey back to health. After 12 years, IHC’s Wellness Center has become a successful and unique model for health, especially for Urban American Indians who would have no other place to turn for their journey back to health.

Suzanne Schrandt, JD, is the Deputy Director of Patient Engagement at the Patient-Centered Outcomes Research Institute (PCORI). She is responsible for supporting the Director of Patient Engagement in creating networks and engaging patients across the nation to provide broad-based input on the development and execution of PCORI’s research.

Schrandt has been involved in patient education and advocacy since being diagnosed with a form of rheumatoid arthritis as a teenager. For more than 15 years, she has advocated on behalf of children and adults with arthritis and has been engaged in numerous patient and provider education initiatives aimed at increasing early diagnosis and appropriate, patient-centered management of chronic disease.

Before coming to PCORI, Schrandt served as the health reform strategy team leader for the Kansas Health Institute, where she educated the state's policymakers, providers, and consumers on the implications of the Affordable Care Act. While there, Schrandt also led the Kansas Legislative Health Academy, an intensive educational experience for select Kansas legislators. Schrandt also previously served as the Coordinator of Public Health and Public Policy for the Arthritis Foundation in Kansas City and as a Research Associate for a Human Genome Research Institute Ethical, Legal, and Social Issues project.

Schrandt is a member of the Kansas Bar and the American Health Lawyers Association.

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