The first iteration of the program took place at the Metastatic Breast Cancer Research Conference (MBCRC) in 2023, a conference that prioritizes including advocates, but did not previously have an established framework for forming partnerships. We called the program the MBCRC Advocate Researcher Program (MARP) and hypothesized that a more formal program that explicitly targeted the above challenges would enable bidirectional relationships between advocates and researchers. Herein, we describe our approach, the experiences of the participants, and opportunities to organize future programs.
In total, 21 researchers and 21 advocates applied for the program, and all were ultimately accepted, creating 21 pairs. Of the 21 researchers, 19 filled out the pre-conference survey, showing there were 9 graduate students, 6 postdoctoral fellows, and 4 junior faculty members who were paired with advocates. The majority had previously worked with advocates (15/19, 79%). Of the 21 advocates, 20 filled out the pre-conference survey and all (20/20, 100%) had previous science or advocacy training experience. When asked how they heard about the program, most participants heard through MBCRC-related emails (Fig. 1). More researchers than advocates learned about the program from social media.
When asked about preparing for the training, about half of the researchers (10/19, 53%) and three-quarters of the advocates (15/20, 75%) said they prepared by reading research articles and reaching out to other researchers who work with advocates. The majority of people in both groups had read about or discussed the value of working with each other (13/19, 68% of researchers and 12/20, 60% of advocates). From the researcher’s perspective, in open survey responses, advocates add important perspective to research directions and priorities, including ensuring the research not only impacts survival but also ensures patients receive quality care (e.g., considering potential side effects of novel treatments). Additionally, advocates remind researchers why they do cancer research, provide motivation to continue working in the lab, and center their research ideas around patient needs. Further, working with advocates requires researchers to describe complex topics in more lay terms. From the advocate’s perspective, working with researchers helps them increase their own knowledge that they then share with others, including informing peers about clinical trial opportunities and sharing the value of engaging in research. They can share their experiences as a patient, including their treatment and clinical experience, ultimately leading to improvements in research, which is rewarding. Both groups appreciated the value of joint exploration and collaboration.
When asked how they felt about the program, more researchers mentioned being nervous (5/19, 26%) than advocates (2/20, 10%). When describing their feelings about the program, 15 advocates and 13 researchers mentioned the term “excitement.” From both groups, the comments reflected a blend of excitement, anticipation, and a touch of nervousness, with a shared commitment to learning, partnering, and building meaningful connections. Many researchers mentioned this was their first one-on-one in-person interaction with patient advocates, which added a layer of nervousness but also a high level of anticipation.
All participants were asked about their experience with MARP in a survey sent 1 week after the conference ended. There were 17 researchers (out of 21; 81%) and 12 advocates (out of 21; 57%) who filled out the post-conference survey. When asked to score whether the program met their expectations, the majority of participants said their expectations were fully met (Fig. 2).
Most participants reported feeling prepared due to pre-conference resources and their background; however, some faced challenges related to partner interactions. On the first day of the conference, name tags were placed for the participants to sit near their partners. With so many pairs meeting for the first time, some of the pairs missed each other initially, including one pair who was never able to connect (leading to 20 pairs participating in the program). In surveys completed after the conference, participants noted they would have appreciated being introduced to their partner via email to allow for a virtual meeting ahead of the conference.
When asked about goals they set for the following six months, the participants mentioned monthly communication, lab meeting attendance, lab tours, and seeing each other at conferences. The researchers hoped to understand patient obstacles and learn about patient priorities. Advocates were interested in understanding research projects and helping review presentations and grants to ensure the language was understandable for broader audiences. Some participants mentioned they did not identify goals or struggled to know what goals to set, aligning with previous findings that even if these partnerships can be established, people do not always know what the relationships should look like. One advocate even mentioned this in their survey, stating, “More guidance during the conference on how the pairs could work together would be nice.”
While the majority of participants described a positive experience with MARP, many provided suggestions for how to improve the program moving forward. One researcher requested additional expectation setting, including “there could have been more structure, clearer ‘rules’ and defined expectations about the MARP for it to work better.” Two researchers asked for longer orientation, with one also suggesting a formal debriefing session at the end of the conference. One researcher suggested that the advocates select their researcher based on their research and interests, rather than having the organizers choose.
All 20 pairs who successfully matched completed their blog posts, which were subsequently posted on the Theresa’s Research Foundation website (available from: https://theresasresearch.org/marp). During the month of October, the blogs were shared via X on each weekday. The blogs highlighted participant experiences with the program and the value of working together.
Six months after the conference, a third survey was sent to all participants, and 14 researchers and 15 advocates filled it out. Only 50% (7/14) of researchers and 40% (6/15) of advocates said they maintained regular contact with their MARP partner. Busy schedules and geographic distance were factors that affected contact for some pairs. Those who did maintain contact did so through regular Zoom calls, text and email communication, manuscript reviews, conference presentations (posters/talks), and working on grants together. When asked whether further support or training would improve the outcome of MARP, both researchers and advocates suggested additional structured opportunities for connecting virtually. Some mentioned they simply forgot about the program, and the 6-month survey email reminded them, suggesting more regular reminders might support improved, longer-term connections. One researcher suggested it would be helpful to have a more detailed outline of activities partners can do together.
When asked about the value of the program, many researchers appreciated how the advocate perspective influenced their research, including more effective ways to communicate scientific results and ways to link their research questions to improving patient outcomes. One researcher said, “When we looked at the data, as a researcher, I immediately looked for any significant changes in a gene expression level. However, my advocate partner was looking for the relationship between the expression level and patient survival data. That was a very educational moment that I should think more about the patient outcomes.”
