MARP 2023: Esra and Shaheen
An Honest Interview
Esra Kadioglu, Advocate and Shaheen Sikandar , Researcher
Esra: What is your experience working with a patient advocate (PA)?
Shaheen: I have heard from a colleague about their experience working with a PA. So, on my next grant application, I reached out to them to work with one. Dianne (PA) gives us really interesting insights and she has a patient centric way of thinking about the problems we are working on. After our zoom discussions, I send her a draft and she gives us feedback. If/when it gets funded, we meet on a quarterly basis and I keep her updated on the research. Some of our research is basic, some is translational.
Esra: What kind of feelings happen when you and the PA talk about research?
Shaheen: My PA sometimes says “this is going to take forever. I’m not going to be around to see this.” but she also acknowledges why it takes time. I often get the question “Is there anything you can do to speed this up?” but we do basic science and it takes time. We’re not in clinical space.
Esra: Are you the only one interacting with the PA in your team?
Shaheen: No, the graduate students and the technicians in my lab join our meetings, too. We participate in GRASP poster walkthroughs and the team manages them.
Esra: Are you aware of the importance of your research, what you are doing?
Shaheen: For the most part, I try not to actively think about the urgency because it may become paralyzing. When I was a student, I used to think: “I’ll find a cure for cancer”. Then I realized how complex it is. It evolved to “I’m going to do what I can”. A medical oncologist I went to rounds with was frustrated that he didn’t have better options for his patients, he’d go to work in a lab to find something. He would go to rounds at 7pm after conference! For me, I need to be in research so that I can do something. We know that this takes long. When we go to conferences and meet clinicians, we’re acutely aware of the urgency. The research done in the labs is helpful, certain patients qualify for certain therapies. It helps so that some things get to move forward more quickly.
I am very encouraged by the fact that one patient advocate at MBCRC last year said, “we are your biggest cheerleaders”. For me that was awesome! It gives me motivation to get up everyday and go to my lab. Communicating with the PAs inspires me to work harder, to do more.
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Shaheen: How do you feel when you talk to researchers like me?
Esra: Fascination, gratefulness, sorrow. Sometimes I want to scream “find a cure already” but deep down I know this is not realistic.
Shaheen: Was this your first metastatic breast cancer meeting? How did you feel afterwards?
Esra: Yes, MBCRC was my first such meeting. Learning about how basic science approaches this problem was very interesting. I’ve been reading about clinical studies, translational studies before coming to the conference but hearing about the basics, mouse models, etc. was very different. At times it made me wonder “will this ever get to anything meaningful?”. However, seeing so many brilliant people working on this problem gives me hope. Everyone is working hard to add another brick to the wall of knowledge.
Shaheen: What can be changed about how we do things?
Esra: The last day of the conference was very eye opening. I witnessed how researchers have their own frustrations through grant requirements, performance review criteria, publication processes, etc. I was astonished to hear that some open access publications cost almost 3-month salary of a grad student and how broken the review system was. I think there are things we can do as patient advocates to mobilize institutions to smooth out these processes so that at least the bureaucratic burden on the researchers is lessened.
