Karen Wernli, Mary Bush, and Dianne Johnson provided the keynote presentation at the November 3rd CERTAIN Patient Advisory Network Annual Symposium and are a great example of a successful patient-researcher partnership. Karen received funding from the Patient-Centered Outcomes Research Institute (PCORI) in 2013 for her study entitled, “Comparative Effectiveness of Surveillance Modalities in Breast Cancer Survivors.” This study aims to find out how well MRI works compared with mammography for surveillance in women who have previously had breast cancer. Specifically, the project’s goals are to 1) understand doctors’ and patients’ experiences with surveillance mammography and MRI; 2) provide evidence on which outcomes are more or less likely to occur; and 3) develop patient decision aids to help women and their doctors choose the surveillance method that is right for them. The project team, including Karen Wernli as Principal Investigator and Mary Bush and Dianne Johnson as Patient Partners, are conducting focus groups with patients and interviews with doctors to gain insights into women’s experience with surveillance mammography and MRI, comparing mammography to MRI using data from the Breast Cancer Surveillance Consortium to determine how well each test works, and developing patient decision aids to help women and their doctors make more-informed choices about surveillance. Karen and her team hope this study will help women and their doctors make clearer, better choices about the surveillance method that is right for them.
At the November 3rd meeting, Karen, Mary, and Dianne talked about their experiences developing their partnership, how it has changed in the course of their 18 months together, and what guidance they would offer others hoping to embark on a similar partnership. Two key lessons learned by this team include:
Patient Partners Can Legitimize Researcher Presence
Karen, Mary, and Dianne have travelled across the country conducting focus groups for their project, and Karen thought this was a great strength of their partnership. She noted, “I think one way that they've really helped us is to legitimize our presence. While we have other investigators that we're working with in those regions, the patients don't necessarily know the investigators that we're working with, and they may wonder why researchers from Seattle have come all this way to talk to them. [Because of Mary and Dianne,] we can say, “We have these other women that we've been talking to, and they trust us. So I hope that you will trust us as well as we go through these conversations together.” Dianne confirmed this, relaying the story of a focus group participant in North Carolina who may not have stayed for the discussion if not for the patients in the room. From Dianne:
"This one woman came in the room, and she was fidgety and anxious, and we [the research team] were kind of all at one end and she went all the way around to the other end of the table and sat down. And I thought, ‘Wow, she's really nervous!’ So I just went over and sat down next to her. We were chatting, and I said, ‘I'm a cancer patient also, and I've been through these focus groups.’ I'm pretty sure she would have just left if she hadn't had somebody to just talk with, and by the time we got going with the focus group, she was calmed down and had a lot to offer."
Research is a New Language for Patient Partners
As Patient Partners, Mary and Dianne join regular team meetings and are partners in all aspects of the project, including the data analysis. The broader research team includes biostatisticians, epidemiologists, and clinicians, and when Mary and Dianne joined the team, conversations quickly became too quick and full of acronyms for them to always follow. Mary compared early meetings to a tennis match, with her head swiveling back and forth trying to follow the conversation volleyed. To mitigate these issues, Karen said they did several things, including developing a written dictionary of acronyms and key research terms and touching base after team meetings to clarify discussion points or new concepts that came up during the meeting.
Karen, Mary, and Dianne are among the first long-term patient-researcher partnerships in our network and are a great example of building a healthy and productive partnership with recent recognition in the Wall Street Journal. We look forward to checking back in with them at the end of their project to hear about how their partnership continued to grow and evolve and the high-quality patient-centered work that it produced!