Diagnosed with lymphoma as a teen, Susan Strong has almost four decades of lived experience from the patient perspective. The mantle radiation that led to her cure eventually caused cardiovascular disease and breast cancer. After a successful career in secondary education, she transferred her skill set to the immensely gratifying work of patient advocacy. As a skilled communicator, she bridges the communication divide between advocates, patients, families, and the scientific and medical communities.

Her focus is on embedding diverse and representative patient and care partner perspectives in research projects. She has been involved in PCORI projects in the cardiovascular disease space and served as the patient lead in PCORI engagement and Pipeline to Proposal awards lead by Heart Valve Voice US. She is currently involved in the ASPIRE study which is discovering ways to embed the patient voice in decision making for the treatment of aortic stenosis. Additionally, she participated as a working group member for three years on a PCORI-funded study comparing treatments for aortic valve disease.

Involvement with PCORI

Research: Optimizing Health Outcomes in Patients with Symptomatic Aortic Valve Disease – Working Group Member
Pipeline to Proposal: HVV Stakeholder Advisory Board – Patient Lead

Ambassador Interests

Health Conditions Health Conditions These are the broad terms we use to categorize our funded research studies; specific diseases or conditions are included within the appropriate larger category. Note: not all of our funded projects focus on a single disease or condition; some touch on multiple diseases or conditions, research methods, or broader health system interventions. Such projects won’t be listed by a primary disease/condition and so won’t appear if you use this filter tool to find them. View Glossary
Populations Populations PCORI is interested in research that seeks to better understand how different clinical and health system options work for different people. These populations are frequently studied in our portfolio or identified as being of interest by our stakeholders. View Glossary
State State The state where the project originates, or where the primary institution or organization is located. View Glossary

Send a request to connect with Susan Strong

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