11:35 am - 12:20 pmSunday, September 27
LK 120
Journey of a patient partner in research: an example in a PCORI funded project
LK 120
Journey of a patient partner in research: an example in a PCORI funded project
Patient Investigator, SIMBA
Ph.D., Assistant Investigator, Group Health Research Institute
Patient Co-Investigator
GroupHealth Research Inst.
In 2015, the Patient Centered Outcomes Research Institute (PCORI) will spend $460 million on research of importance to patients and caregivers. All awardees must have a component of patient engagement... Read more

Description

In 2015, the Patient Centered Outcomes Research Institute (PCORI) will spend $460 million on research of importance to patients and caregivers. All awardees must have a component of patient engagement to involve patients in the execution of the project. However, there is little mentioned in the literature on patient engagement from the patient’s perspective.  The purpose of our panel discussion is to share as patient partners and research investigators the surprises, benefits of patient engagement, challenges encountered, and a model for successful integration. Our goal for this panel discussion is to encourage patients and researchers to adopt a patient partner model, learning from our experiences.

We are involved in SIMBA, a PCORI-funded project, which is comparing the effectiveness of mammography to mammography plus MRI for breast cancer screening in women with a personal history of breast cancer. Mary and Dianne are patient partners who joined the research team early in the project with Karen, the Principal Investigator, and Susan, the Project Manager. Our discussion will highlight the following topics:

Surprises: expectations and realities of patient partnership:  The role of patient partner has evolved during this study.  We will explain how expectations and reality have meshed, including discussion of time commitments, participation in scientific team meetings, travel and issues of compensation.

Beneficial impact of patient partnership on the research project:   In our project, patient partners serve as the voice of the patient and translators of SIMBA’s progress, research questions, and results as we attend many meetings with researchers, biostatisticians, physicians, focus group participants, advocacy organizations and our patient advisory board. We will provide specific examples of communication that has kept the research focus on the patient benefit.

Challenges for patient partners:  It is exciting for patients and researchers to engage in this new way of research, but there are challenges, such as: 1) understanding the research process including terminology and statistics; 2) public disclosure of the patient partner’s health status; and 3) patient partners balancing their personal opinions with the collective stories of patients heard.

Successful integration of patient partners in the research team:  The SIMBA leadership team is critical in supporting patient partners to fully participate.  Key components to success are taking the time needed to build trust, respecting patient partners in this work just like other research collaborators, providing opportunities for training when requested or required (e.g., Human Subjects Review training, media interface training) and most of all being flexible enough to recognize the value of patient partners and expand the role.

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.

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.

Susan Brandzel, MPH, is a senior research project manager based at Group Health Research Institute in Seattle, WA. She has over 22 years of public health research experience. She has helped design, execute and analyze epidemiologic and clinical trials research both in the U.S. and internationally. In addition to project management, Ms. Brandzel has extensive experience facilitating key informat interviews and focus groups and analyzing qualitative data. Outside of the public health domain, Ms. Brandzel is also a freelance writer and regular contributor to the Bainbridge Island Magazine.

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