Shared Experiences: Cancer Research Outreach Director | Taisha Hendrickson
Developed in partnership with Count Me In.
We spoke with Taisha Hendrickson, the Director of Outreach, Engagement, and Communications at Count Me In X Count Me In: a patient-partnered organization working to put the patient voice back into cancer research..
Read on to learn more about how Count Me In works to reach out to the cancer community, how they engage with patients throughout the research process, and what Count Me In does to specifically reach marginalized cancer communities.
What is your current role at Count Me In?
Taisha: I’m the Director of Outreach, Engagement, and Communications at Count Me In. I focus on leading these key three aspects (outreach, engagement, and communications), for all of our cancer research studies and for the organization at large.
Count Me In is a direct-to-patient partnered research organization. The main focus of my role is reaching patients where they are. That can involve outreach through social media, interviews, tabling at cancer conferences, and many other outlets. Reaching patients and families within the cancer community, to inform them of Count Me In’s research, to then aid in growing participation in our research studies, is the core focus of our team.
Once we’ve enrolled participants in our research studies, it’s crucial for us to remain engaged in a variety of ways. There are different levels of engagement and touchpoints with participants throughout the year. We share updates about their projects and work with super-engaged patients who become Count Me In ambassadors to their communities. We also create opportunities for patients to partner with us, by sharing feedback on outreach and communication strategies and materials, to better refine our reach within their cancer communities. Most importantly, we take the time to listen to their stories and provide platforms for them to share their personal journeys through cancer, to ensure that their voices are heard.
Another key aspect of our work involves building solid relationships with our scientific leads, physicians, and advocacy groups/partners, who are all crucial to our work.
What is the difference between Count Me In and traditional research programs?
Taisha: Count Me In is patient-centered, patient-powered, and patient-driven. Our patients partner with us to drive this research and are the ones making the decision to be “counted” in our research projects. We’re constantly engaging with patients through focus group interviews. Patient advisory committees give us feedback for every phase of the process, which we then implement in efforts to further refine and build upon our research operations, to make the process easy and impactful. The patients build this model and are at the heart of everything we do. We don’t start a cancer project without engaging that cancer community. We discuss how we should reach out to members in that community, what sensitivities there are, and the types of messaging that would resonate most.
Once you join Count Me In, the engagement doesn’t stop there. We provide opportunities for our participants to be involved in a wide variety of ways. We share information about all our projects with the participants on a quarterly basis through our newsletter. Our communication lines are always open for patients to reach out to us about anything. Any questions they have, any opportunities they want to be a part of. We also have opportunities for patients to share their cancer stories. There are many different avenues for participants to remain engaged with us and for us to remain engaged with patients.
Do you have a personal experience with cancer?
Taisha: My uncle, unfortunately, passed away from colorectal cancer. Looking at the limitations and barriers to care that he received during that time became a driving force for me as I came into my role at Count Me In. I also have an aunt who is currently in remission from breast cancer. She’s a survivor, but you’re never really “cancer-free.”. Having these personal connections and seeing directly how cancer affects families, I wanted to be a part of something that’s driving change, possible treatments, and research discoveries with an emphasis on giving patients a voice.
I believe in the mission of counting everyone’s cancer experience to hopefully change the future of cancer. I’m really passionate about our focus on getting more research participants from groups historically underrepresented in cancer research. I’m passionate about reaching out to marginalized communities and bringing their voices to the forefront of the cancer research movement.
I think the patient voice is the missing piece of the puzzle when a lot of these clinical trials are in development. The traditional version of clinical trials did not accurately represent the full cancer population. Being involved in this research initiative where the focus is making sure that everyone’s experience is counted and every voice is heard is really important.
What work has Count Me In done to reach marginalized communities?
Taisha: We center our focus on specific types of cancer and how disproportionate the research has been for certain communities with that type of cancer. For example, our colorectal cancer project had a large focus on reaching early-onset patients, from underserved communities. Attention has been raised in recent years of the socioeconomic disparities when it comes to colorectal cancer care and screenings for colorectal cancer. A lot of these communities do not have the proper resources to prevent colorectal cancer among their community members.
Another cancer project that has a high focus on underrepresented communities participating in the research is our metastatic breast cancer project. Overall, we are trying to ensure that all of our projects have proper representation of marginalized communities and communities that have been historically underrepresented in cancer research.
In cancer research, there’s an aspect of building trust within marginalized/underrepresented communities, due to many members feeling a sense of mistrust when it comes to research and clinical trial developments. Our hope is that in our approach to directly partnering with patients in research, we’re able to break some of those stigmas in becoming a trusted research model.
What misconceptions about cancer research would you like to debunk?
Taisha: One frequently asked question is about data security. Participants' personal information is secured, protected, and not shared outside of what the participant agrees to in the registration process. Also, there is a general negative stigma associated with scientific research. People don’t want to feel like they are a nameless science experiment. Because our research is patient-centered, participants are voluntarily submitting their samples and medical information to us and we are very open and transparent about what we do with those samples and how they are translated into de-identified research data.
How do the experiences you've had working with Count Me In fuel you on a day-to-day basis?
How do the experiences you’ve had working with Count Me In fuel you on a day-to-day basis?
Taisha: My personal and career experiences, and passion for being a part of mission-driven work, continue to be the driving forces behind the work that I do. Since the inception of our first project in 2015, brought together by researchers wondering how to bring patients directly into the research process, has grown Count Me In to what it is today, where we are known for this leading patient-partnered research model.
Our data is also available to researchers everywhere, and we’re not just keeping this information to ourselves. We’re seeing the research we’ve worked on being used to develop cancer clinical trials, which is an indicator that this research model works. It’s hard to see the difference you make on a day-to-day basis. But you have these moments when you hear a patient talk about their experience and the impact of our project, and that’s what keeps a lot of us going.
What has been the most impactful experience you've had with a cancer community member/patient while working with Count Me In?
Taisha: We recently did a collaboration with PBS where we featured stories from six of our participants to broadcast on live TV. It’s called Stories from the Stage. These patients have been involved with Count Me In for several years and have worked as huge advocates for us. Hearing their stories impacted so many people including myself. It brought back into perspective why we do the work that we do. That was definitely an impactful moment for me and a lot of our team members who were there to experience it. We’re going through the operations of this organization every day, but it’s different to have the opportunity to listen to people’s real cancer stories.
The participants all had different types of cancer, different cancer journeys, and different health barriers. Being in the room with those stories and that energy, there are no words that can truly describe how powerful that evening was.
Why do you believe that it is important to count every cancer experience?
Taisha: I’ve had many conversations with patients from marginalized backgrounds. Cancer patients who say “They’re developing clinical trials, but they aren’t thinking of people who look like me.” They are unsure when it comes to trying new treatments as they did not know if people with their race and genetic background were involved in the testing phases. At Count Me In, our mission is deeply rooted in making sure that the voices that usually are discounted, are counted here, to understand cancer more deeply and help shape and propel the development of future discoveries and treatments.
Count Me In is a nonprofit patient-partnered research program that aims to accelerate the pace of cancer research by collecting and analyzing comprehensive data from patients with cancer. The program is a collaborative effort between patients, caregivers, researchers, and clinicians. To join the Making It Count movement, visit JoinCountMeIn.org.