PARE0028 LEAD PATIENTS – A RESOURCE FOR IMPROVEMENT OF THE HEALTH CARE SYSTEM
Authors: M. Beermann, K. Nilke Nordlund
Journal: Annals of the Rheumatic Diseases (2020)

Background: The project “Lead Patients – a new resource for health”, led by researcher Sara Riggare at Karolinska Institutet and financed by Vinnova, the Swedish innovation authority, launched in 2017 and the Swedish National Organization for Young Rheumatics was one out of 14 partners. One of our tasks was to develop training courses for health care staff, and to try out what happens when lead patients are giving the opportunity to educate. We developed and produced nine different courses, and during the Autumn of 2019, we had the chance to try out two of them within the project. Objectives: The aim was to switch the perspective and see what would happen when patients’ expertise and knowledge is used to educate health care professionals and challenge the norm about health care professionals being superior. The objective with first training course, “Teams that enable self-realization”, was to create conditions and find new methods for the health care professionals to better support patients with what actually matters to them. The objective with the second training course, “Anti-oppressive pedagogy and language impact”, was to create new knowledge as a group and find methods for inclusion and anti-discrimination. Methods: “Teams that enable self-realization” was conducted as an interactive lecture with a concluding workshop. The lecture was based on results from the Swedish Young Rheumatics Report, teamwork and the Swedish Patient Act. The workshop consisted of a case, where the participants were supposed to come up with a plan for a first meeting and treatment of a patient. “Anti-oppressive pedagogy and language impact” was conducted in two parts, with one week in between the two occasions. The first one was mainly a lecture with background and theory about anti-oppressive pedagogy, norms and power structures, followed by a workshop where the participants analyzed the organizations’ own value principals. The second occasion was a deepened discussion with the purpose of identifying new methods for work and strategies to move forward. Results: The main goal with the training was to highlight positive examples and create creative conditions to be able to identify these new methods and tools. And during the training, there was a great will from the staff to work in a more patient-centered way and let what is most important fort the patient to be what is directing the meeting. Some suggested that the patient should be considered a part of the health care team, but that methods are missing for making it work today. There was also a great will to reflect over what consequences the current health care system might have, and to discuss possible changes. It was exciting to see the traditional hierarchy, where patients are seen as passive receivers of care, being challenged for real and letting patients not only talk about “what it’s like to live with a chronic disease” but actually be seen as capable and qualified educators. Conclusion: If lead patient-led training becomes an obvious and vital part in building and develop the health care system, it will lead to new opportunities and possibilities to better form the health care based on patients’ needs, both strategically and operational. Because converting to a patient focused care isn’t just about changing old attitudes and organizational culture, it’s also about building new adapted structures and methods for governing the health care system. Disclosure of Interests: None declared