PatientsLikeMe and Shire have announced a new collaboration that will support the development of a patient-centered, real world health learning system that expands understanding of patient health and disease.

Shire, a global leader in rare diseases and other highly specialized conditions, will work with PatientsLikeMe to appropriately engage patients and caregivers at every stage of their journey. Through the creation of digitally-enabled research communities and tools, this multi-year collaboration will help those struggling with a rare disease to track and share their experience with others living with the same condition. It will also connect patient-generated health data with genotype and physiological data to enable research outcomes in order to help Shire better meet the specific needs of patients with rare diseases.

Philip Vickers, Ph.D., head of R&D for Shire, said working with PatientsLikeMe will help the company overcome some of the traditional challenges inherent in understanding rare diseases. “Establishing regular connections with patients and their caregivers has been challenging for researchers studying rare diseases. We typically study patients at a specific point in time in a clinical setting that may be far from home. Our collaboration with PatientsLikeMe will enable Shire to understand how disease impacts patients in their own environment and integrate data from multiple sources on a single platform. Our goal is to gather a more complete picture of the patient and caregiver experience that could potentially guide the development of new, more patient-centered treatments.”

PatientsLikeMe Co-founder and President Ben Heywood said the collaboration will give patients and caregivers new ways to understand their symptoms, treatment impacts and quality of life over time, and new insights into how to improve their outcomes. It will also help both companies advance research for a deeper and more collaborative understanding of health and disease.

“From my own family’s experience, I know that having a rare disease can be incredibly isolating. But as we’ve seen with other conditions, patients and caregivers who connect on our platform have unprecedented control and influence over their experience, and potentially their outcomes,” Heywood said. “Our work with Shire will give patients, caregivers and researchers access to new forms of data that can improve our understanding of the human condition, and help Shire align their operations behind patient-driven directives. We applaud that effort and are delighted to help drive it.”

Karl Hick, CIO for Shire, said that “digital technologies are driving a major shift in healthcare, empowering patients and their caregivers to take greater control of their health outcomes, and enabling better insights into patient needs. The collaboration between Shire and PatientsLikeMe will create an empowered and enlightened community of rare disease patients and caregivers, and integrate cutting-edge technologies to build a full understanding of the disease and diagnostic journey.”