PATIENTS IN THE DRIVER'S SEAT! CO-RESEARCH ON PATIENT-DRIVEN INNOVATIONS
Hosted by Karoliska Institutet

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.

This presentation highlights 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.

Maria Reinius will first present 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 end with a panel discussion, where participants are invited to ask questions.

Presentation:
• Maria Reinius, RN, PhD, Researcher at the Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Sweden

Panel:
• Dr. Mathieu Boudes, Coordinator of PARADIGM, European Patients Forum (EPF), Belgium
• Dr. Paola Zaratin, Director of Scientific Research at the Italian MS Society and MULTI-ACT project Coordinator, Italy
• Maria Reinius, RN, PhD, Researcher at the Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Sweden

Moderator:
• Laura Cande, Policy and Project Consultant, EHMA

#EHMA2020 #healthmanagement #patients

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