Heart Valve Voice US to Train Patients As Research Advisors and Advocates

Organization Receives Eugene Washington PCORI Engagement Award

WASHINGTON–(BUSINESS WIRE)–Heart Valve Voice US—a patient-advocacy organization focused on improving the diagnosis, treatment, and management of heart valve disease—is pleased to introduce an intensive, virtual program to train patients and care partners to become research advisors and advocates. The program – Valuing Advocates’ Lives, Voices and Experience (VALVE) in Research – will be the basis for the creation of the heart valve disease research network (HVD Network).

This training is being funded through a Patient-Centered Outcomes Research Institute® (PCORI®) Eugene Washington PCORI Engagement Award.

“Heart Valve Voice US will increase the knowledge, competencies and abilities of heart valve disease patients and caregivers to become meaningful partners in research, while creating practical connections among these patients, researchers and other stakeholders,” said Susan Strong, Director of Patient Engagement at Heart Valve Voice US. “The long-term objective is to increase the number of patients engaged in heart valve disease research and dissemination activities with federal agencies, PCORI and industry efforts.”

Through six training modules, patients will engage with expert faculty representing the perspectives of researchers, regulators, medical technology innovators, payors, advocates and others. The training is being delivered through the new “My Valve My Voice” patient community and will reside within the community with ongoing support.

“Heart valve patients are largely dependent on medical devices to improve their health, rather than drug therapies, but the medical device industry has been slower to adopt patient engagement strategies, “said John Lewis, Executive Director of Heart Valve Voice US. “Through this training, we are preparing patients to fully engage in research to ensure clinical trials are designed to best meet their needs and address that outcomes are most meaningful to them.”

An estimated 2.5 percent of the US population suffers from heart valve disease, though the actual incidence may be significantly higher because of underdiagnosis. Even when diagnosed, many patients do not receive the necessary treatment because they lack access to treatment, do not understand the treatment options available to them, or do not fully understand the risks of various care pathways. Heat Valve Voice US is dedicated to raising awareness about the disease among patients, caregivers, medical professionals and other stakeholders.

About

Heart Valve Voice US, a nonprofit patient advocacy organization, provides a united voice for people living with heart valve disease. We advocate for early detection, meaningful support, and timely access to appropriate treatment for all people affected by heart valve disease. www.heartvalvevoice-us.org.

The Patient-Centered Outcomes Research Institute® (PCORI®) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work.

Contacts

John Lewis, Executive Director, 202-285-5726

john@heartvalvevoice-US.org