The Role of Patient Advocates in Clinical Research

Carla Strom, MLA, is the assistant director for operations in the Office of Cancer Health Equity at Wake Forest Baptist Comprehensive Cancer Center (WFBCCC). She brings more than 20 years of experience in oncology education, research, health policy, and health disparities to this role. Strom’s responsibilities include providing oversight for the office as well as leading grant writing and community capacity building through collaborations, assistance with assessments and evaluations, and grant writing. A leader for WFBCCC’s community outreach and engagement activities, Strom created the Advocates for Research in Medicine (ARM) program, incorporating the patient’s voice into cancer research. She serves on the NCI Community Oncology Research Program (NCORP) Symptom Management and Quality of Life Steering Committee and the Wake Forest NCORP Research Base Executive Steering Committee. Strom is a two-time young adult cancer survivor.  

In a conversation with ACCCBuzz, Strom talks about how her role as an advocate has evolved and why listening to the community’s voice early and often in clinical trial development and cancer research is vital.  

ACCC: How did you become interested in patient advocacy? 

Carla Strom: Working formally as an advocate had been on my radar for nine to ten years. I’m 14 and a half years out from my first diagnosis. It takes a while, I think, to be able to reflect back on the larger experience of having cancer. What’s really important in being an advocate is that it’s not about your story. It’s about understanding the bigger perspective of what it means to have been a cancer patient or to be a cancer survivor.  

ACCC: What was your path to representing the patient’s point of view on research committees? 

Carla Strom: Two experiences helped ready me for the advocacy positions I have now. Very early on in the existence of the Patient-Centered Outcomes Research Institute (PCORI), I served as a survivor/patient stakeholder grant reviewer. That allowed me to formally use my knowledge of grant writing and the research process and couple that with putting on my survivor hat and my knowledge of what the survivorship experience is like and what matters to patients.  

The second experience was when I joined the American Association for Cancer Research (AACR) Scientist « Survivor Program and attended an AACR national meeting as part of that process. After you’ve attended the meeting and sessions, you spend time with other advocates and meet one-on-one with scientists. Then you complete a project. That was really where I started developing ideas regarding what would become the Advocates for Research in Medicine (ARM) program at Wake Forest. At one of the AACR meetings, I met a colleague from Oregon Health and Sciences University and learned about what they were doing. They had launched their own version of an advocate in research program. I started to put two and two together that we could do this at Wake Forest. 

The Wake Forest NCORP Research Base focuses on supportive care trials, not treatment trials. For example, our NCORP trials focus on cancer care delivery, symptom management, quality of life, and patient-reported outcomes. My advocacy experience through Wake Forest dovetails well for me as I serve on the NCI NCORP Symptom Management and Quality of Life Subcommittee because that’s the focus of our Wake Forest NCORP Research Base.   

ACCC: How has your role at the Wake Forest Office of Cancer Health Equity informed your advocacy activities?  

Carla Strom: I think that role has really shaped my work as an advocate. I am part of our NCORP Research Base Executive Steering Committee and the Health Equity Core. I also put my patient advocacy hat on when serving on that steering committee. In the past 10 years, health equity and disparities have, rightfully so, become an increasing area of emphasis. We are at the point where we are done describing disparities; now we need to address them. 

ACCC: Can you share more about the Advocates for Research in Medicine (ARM) program at Wake Forest? 

Carla Strom: I was serving as the patient advocate for many of the cancer center members we have at the Wake Forest NCORP. But I’m only one individual, and I’m not always necessarily the best advocacy match for a specific study. So, I started to identify survivors I had worked with. For example, maybe they’d had a career in nursing, and they have the capacity to contribute as an advocate. If I wasn’t the best suited advocate for a particular project, I played an informal role in connecting our researchers with additional survivors. This ultimately led to the development of the Advocates for Research in Medicine program, which launched in 2020.  

In developing the program, we wanted to figure out how to replicate what’s been done at the national level, for example, a one-week, full-time training program for advocates, but we knew that wouldn’t be feasible for most people in our area. (Wake Forest serves a largely rural region.) We developed a curriculum covering what we believed to be key areas in which advocates need to have baseline knowledge. 

It’s important to add that not every survivor is meant to be an advocate. You have to have an interest in research to serve as an advocate in research, and it’s not for everyone. We started our Advocates for Research in Medicine program with a cohort of survivors. Eventually, we plan to expand the program to caregivers and individuals at high risk for cancer who have not yet been diagnosed.  

ACCC: How has COVID affected the launch of the ARM program? 

Carla Strom: In response to the COVID pandemic, we’ve had to make some adjustments. We had planned for our trainees to do some pre-work and then to have them come on site for a day and a half of core training. Then participants would be offered continuing education opportunities throughout the year, some from our institution and some from other organizations and non-profits. This would provide a deeper dive into specific topics that would be a match to a particular group of advocates.  

In response to the restrictions brought about by COVID-19, we’ve modified the curriculum format to two half-day online sessions and moved some of the core content to the continuing education space. We require advocates to go through the Collaborative Institutional Training Initiative because they will be on the study’s IRB. For ARM Part Two, we intend to develop a “reverse” training to help researchers understand the role of advocates, how best to utilize them, and how to facilitate their capacity to improve research and grants.  

ACCC: Can you share a few more details about the ARM curriculum?  

Carla Strom: The ARM core training covers topics such as cancer 101, research 101, the advocate’s role, basics of clinical trials, different types of grant mechanisms, and how to tell your story. This is never really an easy thing to do, but it does get easier the more you do it. For 2021, we are developing a subset of ARM that will provide additional training about the NCORP, because patient advocates for NCORP studies must have a working knowledge of this program. We also have a supplemental grant from NCI that is focused on helping connect researchers with the community. We are piloting this work with our cancer genetics and metabolism scientific program, so we will be training another subset of advocates to have a slightly more in-depth understanding of cancer genetics, precision oncology, and the common terminology for those topics. This is an important opportunity to specialize our advocates’ training, so they are better equipped to provide input on specific research topics. 

Related Content From ACCC:

ACCC Research Review: January 2021

CANCER BUZZ Mini-Podcast: Improving Community Clinical Trial Participation

In Pursuit of Equity: Diversity in Clinical Research Participation

Clinical Trials Community Engagement