EUPATI Sweden – a practice-based description of the co-creation of a new training to increase patient partnership in research and development Passed
Wednesday May 15, 2024 15:15 - 15:21 G2
Moderator: Emmelie Barenfeld
Presenter: Cristin Lind
Track: Co-creation
This abstract presents the co-creation of a Swedish patient training programme by patients, academia, industry, and the public sector to increase patient partnership in Research and Development (R&D) of medicines and medtech.
It is a description of a practise-based innovation process in which over 20 organisations collaborated.
Oral presentation will be made by second and third co-author.
Background: The European Patients’ Academy on Therapeutic Innovation (EUPATI) is a multi-stakeholder public-private partnership with a mission to provide education that empowers patients to effectively partner in the R&D of medicines and medical devices. EUPATI Sweden, the official Swedish national platform for EUPATI, was initiated by the Swedish Disability Rights Federation with support from a three-year project grant from the Swedish Inheritance Fund (Allmänna arvsfonden) from September 2021- 2024.3
The aim of EUPATI Sweden is to increase patient participation in research by educating patients and representatives in Sweden. Co-creation of the EUPATI Sweden platform: EUPATI Sweden's platform development followed the British Design Council's Double Diamond design process, with four different phases.
1. Discover (Sep 2021 - Jan 2022): Engaged over 300 representatives from patient organizations, industry, 1 https://eupati.eu/ 2 https://eupati.se 3 https://www.government.se/government-agencies/swedish-inheritance-fundarvsfondsdelegationen/ academia, and public sector to identify needs and expectations.
2. Define (Feb - Aug 2022): Analyzed insights from the discovery phase, emphasizing a sustainable solution, demands on availability and accessibility, and a content for training curriculum.
3. Develop (Sep - Mar 2022): Co-created 14 lectures with representatives from patient organizations, industry, academia, and the public sector to ensure accessibility, availability, and quality.
4. Deliver (Feb - Oct 2023): Piloted with 24 patients and representatives, analyzed and prioritized feedback until July 2023, and implemented selected improvements in Sep-Oct 2023.
Results: The education platform was launched in November 2023. The training is freely available on-line. Matchmaking to connect patients and stakeholders is underway, and EUPATI Sweden is in the process of becoming an association
Seminar type
Pre-recorded + On-site
Lecture type
Orals
Conference
GCPCC
Authors
Cristin Lind, Maria Stålgren, Elisabeth Björck Orvehed, Ola Cornelius
Lecturers
Emmelie Barenfeld Moderator
Researcher, Reg. OT
University of Gothenburg
I am employed as a lecturer at the occupational therapy program at University of Gothenburg. I work in various research projects affiliated to the Center for Person-Centred Care (GPCC), as well as in projects affiliated to the Center for Aging and Health (AgeCap).
Research area:
My focus as a researcher lies on how the transition to a more person-centred care can be supported through various interventions. I apply an occupational science perspective in the research. Ongoing research projects evaluate person-centered interventions from a patient perspective as well as educational interventions to support the implementation of person-centered approaches among staff and managers/leaders. The research projects are conducted in different contexts and in collaboration with patients, staff and leaders.
Cristin Lind Presenter
Funktionsrätt Sverige/EUPATI Sverige