Patient Engagement/Monitoring

Heart Valve Voice US Announces Major Initiatives

Heart Valve Voice US, a nonprofit patient advocacy organization, is launching a new mobile app for its popular My Valve My Voice patient community. The app, now available for iOS and Android users, is among several initiatives for American Heart Month and Valve Disease Day announced today by the organization.

“The My Valve My Voice app represents the evolution of our patient community to provide easier access to support services, educational resources, and research opportunities for patients and care partners,” said Susan Strong, Director of Patient Engagement for Heart Valve Voice US.

As part of a virtual conference on Valve Disease Day, February 22, Heart Valve Voice US is conducting a webinar focused on the importance of care partner support titled “Navigating the Patient/Care Partner Journey.” Please register here.

Also, during this American Heart Month, Heart Valve Voice US is:

  • Introducing a series of 10 videos featuring John, a TAVR recipient, and his spouse Kathi, a care partner. The videos walk patients through the complex decisions that go into choosing the right treatment option, the importance of caregivers, and the value of peer-to-peer support for both patients and care partners;
  • Unveiling a comprehensive “Resources for Your Journey” section of its website to provide a curated “best of” collection of educational materials and tools to support patients at every step of their journey, from first experiencing symptoms through analyzing treatment options to caregiver support. Resources also include links to directories of imaging specialists, cardiologists, and surgeons from leading medical societies;
  • Expanding clinical trial services, from patient preference surveys and focus groups to complete patient recruitment services in partnership with Antidote.

“Our goal is to provide patients and their care partners with the highest quality information from the most reliable sources; not limited ‘sponsored’ content,” said John Lewis, Executive Director of Heart Valve Voice US. “We will never charge patients for access to these resources and services, or sell their information,” said Lewis.

Heart Valve Voice US is also pleased to announce it has added two new Board members: Chandra Branham, Senior Vice President and Head of Payment and Health Care Delivery at AdvaMed; and Elizabeth Perpetua, DNP, FACC, Founder of Empath Health, Associate Editor Structural Heart Journal, and a nursing educator.

“We are thrilled to welcome Chan and Liz to our Board as their respective expertise complements our current directors, who represent patient advocates, health policy experts, and leading clinicians in the field of structural heart disease,” said Donnette Smith, Board Chair. “We thank Candace DeMatteis for her participation on the Board and for serving in the role of Executive Director in the early days of the organization.”

Lewis added that, in addition to the initiatives announced today, the organization this year will be working to map the patient journey, launch a campaign to promote screening for heart valve disease, undertake actions to increase diversity in clinical trials, and build a community for Structural Heart Clinic Coordinators.

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