MARP 2023: Terlisa and Jessica
Fostering positive and productive interactions between patients and researchers
Terlisa Sheppard, Advocate and Jessica Christenson, Researcher
Bringing advocates and researchers together was the theme of this inaugural Metastatic Advocate Researcher Program (MARP) that was presented during the 2023 Metastatic Breast Cancer Research Conference (MBCRC) at The Chateaux-Deer Valley in beautiful Park City, Utah. We are continuing to learn that a lot can be done and accomplished when you bring patient advocates together with researchers, especially in the same space, to discuss research ideas that will affect the lives of real patients. This is why patient advocates and researchers from various backgrounds and locations were randomly matched and put together in a conference setting to accomplish the desired goal of coming together to collaborate on some of the important issues that are facing the metastatic breast cancer (MBC) community.
Researchers are sometimes nervous to interact with patients because they’re afraid to say the wrong thing, ask an inappropriate question, or cause offense. The last thing any cancer researcher wants is to cause any patient hurt or distress. Similarly, patients are often anxious when interacting with researchers. In order to foster positive and productive interactions between patients and researchers, we asked several patients to fill out a brief questionnaire focused on what topics make them uncomfortable, what topics do they enjoy talking about, and what could researchers do better when interacting with patients (see the end of this blog for a list of questions included in the questionnaire).
Below we’ve summarized some of the most poignant points made by patients that should help to facilitate positive interactions. The relationships between patients and researchers should be treated as a learning experience on all sides. While mistakes may be made since people have different triggers and frames of mind, we believe that if everyone remains open, understanding, and respectful, then everyone will have a good experience. We are hopeful that patient advocates will play a much more significant role in future cancer research.
Thank you to all of the women that participated in this survey!
Topics Patients Prefer to Avoid
Don’t talk about “good” versus “bad” cancers. Cancer is never good for patients.
Don’t tell or assume that you know what a patient is feeling.
Don’t assume that patient’s families are involved in their cancer experience.
If possible, be conscious of the patient’s stage of disease. Patients with early-stage cancer versus metastatic disease often have vastly different experiences.
Reminders for Researchers
DO NOT TALK DOWN TO ANYONE! Everyone deserves respect.
Acknowledge that interactions between diverse groups promotes innovative science and that patients bring their unique knowledge and experiences to the table.
Generally speaking, patients enjoy sharing their diagnoses and treatment journeys.
If you’re unsure whether something is acceptable to discuss, then ask.
When sharing your research, speak slowly, use lay terminology, and focus on how patients fit into your research.
Remember that cancer affects every aspect of a patient’s life.
Never forget that advocates are much more than cancer patients. As one of our questionnaire volunteers pointed out,
“I am a mother, daughter, sister, and grandmother. I have a big heart and will to live.
Cancer does not define me, but it has changed my life.”
Patient Questionnaire
1) What topics of discussion make you uncomfortable or would you rather not discuss?
2) What questions do you hate being asked?
3) What topics do you like to talk about and what questions do you appreciate being asked?
4) What do you wish that researchers knew most about you?
5) What situations in the past have made you most uncomfortable?
6) What have people said in the past that you found uninformed, hurtful, or offensive?
7) What would make interacting with researchers easier?
8) When researchers discuss their projects/data with you, what could they do better?
9) Is there anything else you can think of that would make patient – researcher interactions better?
