MARP 2023: Teri and Alessandra

The benefits of building a patient advocate/researcher relationship in a conference setting

Teri Pollastro, Advocate and Alessandra Riggio, Researcher

The patient advocate’s perspective – Teri Pollastro

Alessandra and I first “met” over zoom as part of a large DoD project. The meetings are large, and there is very little time to actually get to know the other project participants, especially if they are not from the same cancer center.  When we were paired up at MBCRC in September, we recognized each other. During the first few hours of the conference, we shared the typical pleasantries. I believe having the researcher and advocate sit together during the conference was helpful in developing our relationship. 

As the conference continued, we found ourselves looking at each other after each presentation. We would easily discuss one or two points of the presentation that each of us found intriguing. It became more comfortable for me to ask Alessandra questions on things I did not understand. As you may know, this can be hard for an advocate because sometimes we do not know what we do not know! So, it can be difficult to formulate questions and feel comfortable asking them to experts. Alessandra was very helpful in answering my questions, and she in turn asked me questions as well. 

I distinctly remember having lunch together on the second day of the conference. We were definitely becoming more comfortable with each other.  We found ourselves delving into each other’s backgrounds.  While Alessandra is from Italy, my heritage is Italian. I shared stories of my grandparents and trips that I have made to Italy. She shared her background, and I believe a kinship began to form. 

Since the conference, Alessandra and I met over zoom. As luck would have it, we will both be attending the first in-person meeting for our DoD grant in a few weeks. I am sure we will spend some time together. The MBCRC provided us with an opportunity to build a new researcher/advocate relationship with someone from outside our cancer centers. I have offered Alessandra my help with projects going forward and I also offered to introduce her to other advocates. In turn, Alessandra also offered to be a resource for me. The MBCRC is a great way for researchers and advocates to meet and build relationships. In my opinion, these relationships are the key to more successful research. 

The researcher’s perspective – Alessandra Riggio

I knew Teri through a DoD consortium we are both part of, but I had the fortune of actually meeting her in-person during the MARP orientation session at MBCRC 2023. She struck me straight away for being so bubbly and spontaneous. One word led to the other and, by no time at all, we discovered we had an Italian heritage in common.

As researchers, we often feel afraid of interacting with patient advocates as if they were somehow “different” from us. Being willing and being open to establish a genuine relationship with Teri allowed me to break this “imaginary” wall of fears I (thought I) had to soon realize how similar we were: we were both attending the conference because we cared deeply about the same thing (i.e. breast cancer). Along with the virtue of slowly building a trustworthy relationship came the easiness of our spontaneous interactions: I soon felt comfortable asking Teri personal questions about her own disease and how it affected her life and, likewise, she felt at ease asking me for clarifications during talks and presentations.

Notwithstanding the importance of building relationships with patient advocates in any contexts these could occur, being able to be physically paired with a patient advocate in a conference setting gave me the feeling of wearing 3D glasses. While being able to follow the talks as I normally would have had, Teri’s presence made me aware of the existence of a hidden layer of “details” that I would have not otherwise payed much attention to (eg. realizing how toxic a drug was instead of just focusing on its mechanism of action).

As researchers, attending scientific conferences often gives us a sense of community and belonging. However, there is really not such a thing called “community” until patient advocates become an integral part of the picture. Because it is only within this complete space, wherein both researchers and patient advocates share their deep care and respect for each other, that progress towards changing the odds of breast cancer has the true potential to occur.