Skip to main content

Backpack Health and Rare Patient Voice Partner to Connect Patients to Research Opportunities

Partnership will help the rare disease community contribute to medical research more easily and advance treatments and cures

Towson, MD and Dover, MA – April 1, 2019 – Backpack Health and Rare Patient Voice today announced a partnership to offer additional opportunities for the voices of rare disease patients to be heard. Working in tandem, Rare Patient Voice will inform patients and caregivers about Backpack Health’s data management offerings, and Backpack Health will let its users know about the market research opportunities offered by Rare Patient voice, providing them with the option to sign up if they so choose.

“At Rare Patient Voice, patients are at the heart of what we do,” said Wes Michael, President and Founder of Rare Patient Voice. “We believe in supporting patients by providing them with opportunities to voice their opinions and health experiences to improve treatments, products and medical services. Backpack Health’s emphasis on empowering patients by giving them control of their own health data makes them a natural partner in our mission. We are excited to work together to ensure that patient voices are heard.”

Patients often participate in surveys and interviews out of a desire to share their healthcare journey and make a difference in future medical products and services. Others participate to earn honoraria, which can help them with copays or purchasing medical equipment and devices not covered by insurance. The partnership between Backpack Health and Rare Patient Voice will enable more patients to voluntarily take part in surveys and interviews. Patients will also have the opportunity to voluntarily sign up with Backpack Health and use their mobile application to manage their personal health records securely and, with permission, automatically contribute their de-identified information to research groups.

“The patient voice is critical for research and advancement of treatment and cures of rare and complex diseases, providing a comprehensive view into patient needs throughout their health journey,” said Jim Cavan, CEO and founder of Backpack Health. “Patient empowerment is key to Backpack’s values, and we are thrilled to partner with Rare Patient Voice, enabling patients to express their needs and ensuring that they remain the central focus throughout development of treatment and cures.”

About Rare Patient Voice

Rare Patient Voice, LLC provides patients with rare diseases and their caregivers with an opportunity to voice their opinions through surveys and interviews to improve medical products and services. Participation with Rare Patient Voice is completely voluntary. Rare Patient Voice will never share patient data without consent. Wes Michael, President and Founder of Rare Patient Voice, has been involved in rare and orphan diseases since 1998, interviewing and surveying patients, caregivers, physicians, nurses and advocacy leaders. Wes has more than 35 years of experience in marketing research, and more than 20 years in healthcare marketing research.

About Backpack Health

Backpack Health, LLC builds secure, innovative information tools to help people manage their health journey – including wellness, illnesses, injuries, and chronic health conditions. The Backpack Health mission is to make it easy for everyone to access, own and control their health information to support better health care and attain better health for themselves, their loved ones and their communities. Backpack Health provides a platform for organizations to engage patients, collect up-to-date data and build communities around the globe. To assure data protection for its users’ information, Backpack Health complies with the EU General Data Protection Regulation (GDPR), adheres to its data protection principles, and participates in the EU-U.S. and Swiss-U.S. Privacy Shield Frameworks. Learn more at www.backpackhealth.com.