Carla Strom, MLA, is 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. Her responsibilities include providing oversight for the office as well as leading grant writing and community capacity building. She is a leader for WFBCCC’s community outreach and engagement activities and supports the patient’s voice in cancer center research. A two-time young adult cancer survivor, Ms. Strom serves on the NCI NCORP Symptom Management Quality of Life Steering Committee and the Wake Forest NCORP Research Base Executive Steering Committee. She developed the Advocates for Research in Medicine (ARM) program at the cancer center. Prior to coming to WFBCCC, Ms. Strom spent nine years at the MD Anderson Cancer Center in Houston, TX.
In a conversation with ACCC’s Research Review, Ms. Strom talked about how her role as an advocate has evolved and why listening to the community voice early and often in 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 9 or 10 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. I spent a lot of time working with non-profits that worked with cancer patients and survivors, because 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. I think I was really driven by the work that I had done and continue to do [in oncology]. Also, my first diagnosis was breast cancer—probably one of the first and earliest cancers where advocates showed up as being an important part of the research process. I think The Komen Foundation was one of the first, if not the first, organization to require that researchers involve advocates as part of their research grant proposals.
ACCC: What was your path to becoming an advocate on the Executive Steering Committee for the Wake Forest NCORP Research Base (RB) and as part of the NCI NCORP on Symptom Management and Quality of Life Steering Committee?
Carla Strom: Some organizations have created a formal training program for breast cancer survivors to learn how to be advocates. I had always wanted to participate, but these are week-long programs. I worked full-time the entire time I was a patient and following that, so it wasn’t really an option. It took a while for me to find the right opportunity.
Through my professional work, I’m involved in attending, presenting, and submitting work to national organizations. Two experiences helped ready me for the advocacy positions I have now for the Wake Forest NCORP RB and on the NCI NCORP Symptom Management and Quality of Life Steering Committee. Very early on in 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 AACR Scientist↔Survivor Program and attended an AACR national meeting to be part of that process. For the Scientist↔Survivor Program, 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 around what would become the Advocates for Research in Medicine (ARM) program at Wake Forest. At one of the AACR meetings that I attended, 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.
The Wake Forest NCORP Research Base focuses on supportive care trials, not treatment trials. So, for example, our NCORP trials center around cancer care delivery, symptom management, quality of life, patient-reported outcomes. One of my advocacy/equity colleagues at Wake recommended me and encouraged me to apply for the NCI NCORP subcommittee. I was selected and I’ve been serving on the subcommittee for a little over two years. NCORP has a number of committees that help review research concepts from investigators that want to run their studies through the NCORP and also help determine priorities within topic areas. It has dovetailed well for me to serve on the NCI NCORP Symptom Management Quality of Life Subcommittee because that is the focus of our Wake Forest NCORP Research Base.
ACCC: One of the many hats you wear in your role at Wake Forest is in Office of Cancer Health Equity.
Carla Strom: Yes, and I think that has really shaped my work as an advocate. I am part of our NCORP RB Executive Steering Committee and the Health Equity Core. I also put my patient advocacy hat on in serving on that steering committee.
In the last 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, and now we need to address them.
ACCC: For the Wake Forest NCORP RB committee you are participating in, what is the avenue for the community voice to be heard?
Carla Strom: As an example, I can wear a patient advocate hat on our Steering Committee. We also have individuals on our Steering Committee who can wear the hat of being one of the sites that accrues to our studies. We have an oncologist who accrues to research studies in the community on our Steering Committee. And then, Dr. Weaver has done a lot of work, including in partnership with NCI, at the national level. For instance, there was an NCORP study called The Landscape Capacity Assessment Study that gathered information from all the sites—trying to make sure we understand what the sites look like, what kind of resources they have.
On the NCI Symptom Management and QOL Subcommittee, there is also site representation. We also have researchers whose primary area of focus is disparities, and then we always have patient advocates in addition to experts in the area of symptom management and QOL research.
Locally, through the Wake Forest Advocates for Research in Medicine (ARM) program, we are training a subset of advocates about NCORP so that they can serve as patient advocates for the Wake Forest NCORP RB.
ACCC: Can you share an example of how the process works when, as an advocate, you speak up for the community voice in your work with the NCI committee?
Carla Strom: Patient advocates often speak up about the real-world patient experience. For example, we might say: “You are asking a patient to come in extra every week for six weeks. That is not going to happen. No one is going to sign up for your study.” So sometimes, it [the advocacy issue] is something very practical.
Often, we are asked to weigh in on whether the burden on the patients balances out with what they will get out of the trial.
We advocate for ensuring that patients are compensated for their time. To be clear, you do not pay patients for their participation. But if the study asks patients to come in for extra visits—compensation to cover gas or parking costs is important. For a rural patient or a low-income minority patient, compensating their parking or giving them a gas card makes a big difference because, for example, to participate they drove two hours from Virginia for that extra visit needed for the study.
I also speak up as a Hispanic woman. When researchers are choosing validated instruments that are not validated in Spanish—when they could have just as easily chosen an equally acceptable validated instrument that is available in Spanish—I speak up to let them know this is not OK. It makes a difference in whether or not the overall study could be offered to those Spanish speakers who don’t speak English.
Unfortunately, a lot of time patient advocates are involved as a “check box.” That’s the struggle. It’s a requirement, but people aren’t really invested in it. So, they do it to say they’ve done it. Education has to go in both directions. Patients have to be trained to advocate and researchers have to be trained on how to utilize advocates. That really ties into our Advocates for Research in Medicine program at Wake Forest.
But I will say, I’ve seen the power of advocacy firsthand. After the NCORP subcommittee reviews a [study] concept, the NCI writes a letter reflecting the outcome of the concept review: approved, revise and resubmit, or disapproved. Regardless of the outcome, NCI sends a letter to the team of investigators who proposed the study that outlines anything that the committee is recommending. What was really a turning point for me was when I saw that the NCI had taken the words that I had shared in my review and put them into that letter going back to the investigators of a national study that was going to open across the country.
ACCC: Can you share more about how the ARM program came about at Wake Forest?
Carla Strom: I was serving as the advocate for a lot of the cancer center members we have at the Wake Forest NCORP. But I’m only an N of one, 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 had a 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 take what has been done at the national level, for example, a one-week, full-time training program for advocates, but we knew that would not be feasible for most people in our catchment area. (Wake Forest serves a largely rural area.) As I mentioned previously, connecting with a colleague from OHSU helped spark my ideas for the program. 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: 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 ARM program with a cohort of survivors. Eventually we plan to expand it to caregivers and individuals at high risk for cancer who have not yet been diagnosed with cancer.
In response to the COVID pandemic, we’ve had to make some adjustments. We had planned for a combination of some pre-work and then to have the trainees onsite 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 on specific topics that would be a match to a particular group of advocates. 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 get CITI training because they will be put 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.
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, which is never really an easy thing to do, but gets easier the more you do it. For 2021, we are developing a subset of ARM that will provide additional training to understand NCORP, because to be a patient advocate on NCORP studies you have to have a certain amount of working knowledge of NCORP. We also have a supplemental grant from NCI that is focused around 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 around those topics. We can specialize our advocates’ training to prepare them so that they are better equipped to provide input on specific research topics.
