Building a learning health community: By the people, for the people

The journey of illness as lived by patients and caregivers is not routinely captured for systematic sharing or continuous learning. Consequently, far too many people face the uncertainty of what to expect when confronted with the challenges of illness and caregiving. Patients and caregivers muddle through unfamiliar territory without the benefit of the accumulated knowledge of others who have been on the journey before them. Why do patients and caregivers continually need to search out or reinvent solutions to manage their daily lives with life-changing illness when others have surely faced similar challenges? Are not the lived experiences and contextual perspectives of patients and caregivers valuable for a learning health system? At PatientsLikeMe, an online patient research network, we believe it is not possible to realize the full potential of a continuously learning health system without the expertise and knowledge of patients and caregivers. This paper describes the development of the Patient and Caregiver Journey Framework and related patient-informed principles for design and measurement created by PatientsLikeMe in partnership with patients and caregivers using qualitative research methods, immersive observation and directed one-on-one conversations. These tools provide a person-centric foundation upon which the knowledge and experience of patients and caregivers are collected, curated, aggregated and shared to support a data-driven learning health community continuously powered by the people and for the people.