Journey of a patient partner in research: an example in a PCORI funded project

Dianne Johnson diannej84@gmail.com
Mary Bush mibs5@comcast.net
Karen Wernli wernli.k@ghc.org
Susan Brandzel brandzel.s@ghc.org

Abstract

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.

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