Many patients and their informal caregivers wish to take a bigger part in patient care and in improving health care. Appropriate patient involvement can support patients and informal caregivers and develop their capacity to share information and perform self-care. However, few care systems and tools are designed to enable patients and their informal caregivers to take these roles.

On Wednesday, 18 November 2020 from 15.15 to 16.45, the Karolinska Institutet will host a session highlighting findings and learning from a partnership research program on the implementation of patient-driven innovations. The program’s contribution lies in approaching health care innovations from the perspective of the patients (i.e., studying tools that have been initiated and developed by patients and/or their informal caregivers rather than by formal care providers or researchers). These innovations are Genia, Dream Scale, Care Maps, Patient Recovery Education and Lead Patients. The program builds on a collaboration between researchers, patients, their informal caregivers and health care providers.

The presentation by Dr. Maria Reinius, Researcher at the Department of Learning, Informatics, Management and Ethics at Karolinska Institutet, will provide an overview of the research programme followed by findings from a scoping review covering what is published in peer-review literature about patient-driven innovations.

The session will then feature a panel discussion with Dr. Mathieu Boudes, Coordinator of the PARADIGM project and Dr. Paola Zaratin, Director of Scientific Research at the Italian MS Society and Coordinator of the MULTI-ACT project. Both speakers will share their views on their respective projects, both aimed at meaningful patients engagement in research.

Join EHMA 2020, the preeminent European conference on health management, and join our community of practice, where you can debate and identify solutions for the most current topics in health management.