Lead Patients

A brief introduction.

Lead Patients - patients at the forefront of self-care

The Lead Patients innovation aims to support those patients wishing to take a substantial role in advancing their own and others’ self-care and demonstrate to health care and society what some patients are capable of. This is a social innovation that targets improvements in health systems by enabling substantial contributions from patients and informal caregivers.

The starting point was Sara Riggare’s frustration with the lack of a Swedish word to describe the behaviors and actions she observed among several patients and informal caregivers. Inspired by the concept of “lead users”, she created the Swedish term “spetspatient” (“lead patient” in English), which was included in the Swedish Language Council’s annual list of new words for 2017.

Lead Patient is not just a term; it is also a social innovation to exemplify what responsibilities and actions patients and informal caregivers are capable of taking and to create a social movement toward improved patient roles in health systems