PatientsLikeMe and the Schwartz Center join forces to better understand patients’ perceptions of compassionate care


Collaborators Commit to Sharing Information and Educating Patients

CAMBRIDGE, Mass.—December 9, 2014—PatientsLikeMe and the Schwartz Center for Compassionate Healthcare today announced that they will work together to better understand patients’ perceptions of compassionate care. The collaboration’s goal is to strengthen the relationship between patients and their healthcare providers, which has been associated with better health outcomes, lower costs and increased satisfaction.

Among their work together, the two organizations will survey PatientsLikeMe members to gather their feedback on a proposed Schwartz Center Compassionate Care Scale™, which the Center hopes healthcare organizations will use to measure and reward the compassionate care doctors, nurses and other caregivers provide to patients and families. They will also jointly develop and distribute content to educate patients about compassionate care and what patients can do to elicit compassion from their caregivers.

“Our research shows that while patients believe compassionate care is critically important to successful medical treatment and can even make a life-or-death difference, only about half of patients believe the U.S. healthcare system is a compassionate one,” said Julie Rosen, executive director of the Schwartz Center. “As in other areas of healthcare, we believe measurement can play an important role in improving patients’ care experiences, and we are thrilled to have a collaborator that can help us ensure that we’re measuring what is most important to patients in language they can understand.”

The Schwartz Center has been working on a multi-question scale that rates patients’ perceptions of the compassionate care they receive from clinicians and other caregivers. To further this work, the collaborators will elicit feedback from patients on how relevant this scale is to their experiences by utilizing the Open Research Exchange (ORE), a PatientsLikeMe platform where researchers design, test and share new measures for diseases and health issues.

“What the Schwartz Center is doing to better measure compassionate care is so inspiring,” said Michael Evers, executive vice president of marketing and patient advocacy at PatientsLikeMe. “This is the type of work that ORE is uniquely positioned to support, and this topic is definitely one about which people using our site will have great perspective.”

Added Rosen, “Our goal is to make compassionate care a healthcare priority and a public expectation. Ultimately, we would like to be able to correlate the compassionate care patients receive with the health outcomes they experience. This is the first step in getting us there.”

About the Schwartz Center for Compassionate Care
The Schwartz Center for Compassionate Healthcare is a patient-founded nonprofit dedicated to nurturing patient and caregiver relationships to strengthen the human connection at the heart of healthcare. Research shows that when caregivers are compassionate, patients do better and are more satisfied, and caregivers find greater meaning in their work and experience less stress and burnout. The Center believes that a strong patient-caregiver relationship characterized by effective communication and emotional support, mutual trust and respect, and the involvement of patients and families in healthcare decisions is fundamental to high-quality healthcare. Visit us at or follow us on Twitter or Facebook.

About PatientsLikeMe
PatientsLikeMe® is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 300,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 50 peer-reviewed research studies. Visit us at or follow us via our blog, Twitter or Facebook.

Amanda Dalia

Margot Carlson Delogne

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