Patient public involvement in health research and development - An Exploratory Multi-Stakeholder Analysis
Short description
The overall aim of the project is to, with the help of the European Patients’ Academy on Therapeutic Innovation (EUPATI) in Sweden, examine patient and public involvement (PPI) in health research. PPI has become an increasingly discussed approach to improving health research and practice, but there remains uncertainty about how it can best be implemented in effective and productive ways. Moreover, there are overlaps between PPI and person-centered care (PCC). While PCC primarily focuses on individual direct care (micro-level), PPI aims to strengthen health and medical care for both the individual and society, with initiatives at operational and strategic levels (meso- and macro-level). The degree of involvement varies, from mere consultation (low involvement) to close partnerships and co-creation (high involvement). The launch of EUPATI offers a unique opportunity to conduct an exploratory analysis with multiple stakeholders and to establish long-term partnerships.
Longer description
EUPATI Sweden is a translation of the European version of EUPATI which has existed since 2012 and has approximately 24 international platforms. The Swedish platform was launched in 2021 by Ability Rights Sweden with support from the general heritage fund and in collaboration with the EUPATI Foundation and aims to establish a national EUPATI platform to promote patient involvement. The educational platform is created in collaboration between academia, patient organizations, authorities, and the health care system.
This four-year doctoral project comprises four different studies. Study I aims to analyze the course's participants and actors from different sectors to understand their aims, views, and experiences of patient involvement. Study II focuses on participating actors' experiences of patient participation in health research and development. Study III examines the course participants' experiences of having undergone the EUPATI training. Study IV takes its starting point in the European standard for person-centered care. The goal is to investigate how EUPATI Sweden contributes to increased patient involvement and promotes person-centered care by investigating how the EUPATI training equips patient representatives with knowledge (key knowledge users) and how this affects their role in collaboration with other actors in health research and development.
Data collection will take place before the start of the course and after the completion, through interviews and surveys with participating actors. The project not only aims to increase patient involvement through education but also aims to promote collaboration between patient representatives and healthcare organizations.
Researchers
Kiana Kiani, Ph.D. student
Ida µþÂáö°ù°ì³¾²¹²Ô, Head supervisor
Elin Siira, Co-supervisor
Catarina Wallengren Gustafsson, Co-supervisor
Axel Wolf, Co-supervisor
Vinh Phillips, Patient co-reseracher