The Personal Nature of Patient Engagement at Legacy   Legacy Health Strategies June 28, 2024

The Personal Nature of Patient Engagement at Legacy  

An image comprised of several photos of Legacy employees who deal with serious health concerns in their daily lives, along with text reading "To us, patient engagement is personal." The Legacy Health Strategies logo is below the text.


Patient engagement in clinical research is more than just a professional responsibility for our team at Legacy Health Strategies; it is a deeply personal mission shaped by our experiences as both patients and care partners. Our commitment to fostering meaningful patient and community engagement is driven by the stories and challenges we face in our personal lives, making our work not only professional but also profoundly personal.

Vivian Cheng Larsen: A Personal Battle with Acute Myeloid Leukemia

Vivian Cheng Larsen, our Chief Operating Officer, brings a unique perspective to patient engagement as she battles acute myeloid leukemia (AML). Diagnosed at the age of 44, Vivian’s story is one of resilience and advocacy. Her fight against AML is complicated by the scarcity of bone marrow donors, especially among minority groups. Vivian’s public plea for more minority bone marrow donors on platforms like her local ABC-TV news affiliate reflects her personal struggle and her determination to address the systemic challenges in the healthcare system.

Vivian’s journey through chemotherapy and the potential need for a bone marrow transplant has not only deepened her empathy for patients but also fueled her drive to raise awareness and inspire action. Her efforts to mobilize donor registrations among Asian American, Latino, Black, and other minority communities are a testament to her commitment to giving others a fighting chance. For Vivian, patient engagement is about leveraging her personal battle to create broader systemic change.

Vivian Cheng Larsen playing with her young son

Marsha Calloway-Campbell: Navigating Health Disparities

Marsha Calloway-Campbell, along with Armaray and other members of her family

Marsha Calloway-Campbell, our VP of Culture, Inclusion, and Equity, exemplifies the personal nature of patient engagement. As a care partner to her husband, who was diagnosed with multiple myeloma, Marsha experienced firsthand the devastating impact of delayed diagnoses and healthcare disparities within the Black community. Her husband’s journey, marked by common symptoms misattributed to less severe conditions, highlights the critical need for awareness and early detection in combating health inequities.

Marsha’s participation in panel discussions like the Johnson & Johnson’s (J&J) “National Black Cancer Family Awareness Week” theme, “Engaging the Generations” on multiple myeloma underscores the importance of health conversations within families and communities. 

Her story of supporting her husband through uncertainty and navigating the healthcare system resonates deeply with her professional mission. Marsha’s dedication to promoting health equity and education is not just about professional achievement; it’s about ensuring that others do not face the same barriers her family encountered.

Visit to learn more from Marsha’s recent interview sponsored by J&J: Informed Conversations – Navigating Multiple Myeloma with Your Family

Lisa Nelson: Living with CPVT

Lisa Nelson, our VP of Technology, shares her experience living with catecholaminergic polymorphic ventricular tachycardia (CPVT), a rare genetic heart condition. Diagnosed at the age of 62, Lisa’s story is a poignant reminder of the life changes needed for managing a chronic congenital condition. Participating in the SADS Foundation’s Patient-Focused Drug Development (PFDD) Meeting, Lisa advocates for improved treatments and better quality of life for CPVT patients.

Lisa’s narrative of adjusting to life with an implanted cardioverter-defibrillator (ICD) and the side effects of medications illustrates the daily challenges faced by patients. Her efforts to balance personal health with professional responsibilities highlight the intersection of personal experience and professional dedication. Lisa’s advocacy for more effective treatments and her openness about the emotional and physical toll of CPVT reinforce the importance of patient-centered care and engagement.

Hear Lisa’s personal testimony to the FDA during the SADS Foundation Externally-Led Patient Focused Drug Development Meeting. (Note: this link will start the video at 5 hours and 46 minutes into the video, where the segment featuring Lisa begins. The segment continues until roughly the 6 hour and 27 minute mark.)
Legacy's CTO Lisa Nelson, smiling and proud, having just finished an intense run

The Personal Mission of Legacy Health Strategies

For our Legacy team, patient engagement is not an abstract concept; it is a lived experience. Our personal journeys as patients and care partners shape our understanding of the healthcare system’s complexities and the urgent need for patient-centered solutions. We are driven by a shared commitment to improve health outcomes, reduce disparities, and foster a more inclusive and supportive healthcare environment. 

By sharing our stories and advocating for systemic change, we aim to inspire others and drive meaningful progress in clinical research and patient care. Our work is a reflection of our personal battles, our resilience, and our unwavering dedication to making a difference in the lives of patients and their communities.