Involving patients via the "Austrian Patient Council"

Abstract

<p>A poster presented at the <i>Citizen Science 4 Health 2023</i> conference.</p><p><strong>Abstract</strong></p><p>Patients and loved ones are experts by experience and complete the picture next to healthcare professionals. To increase the involvement of patients in health research we have established the Austrian Patient Council (APC) and accompanied the process scientifically to demonstrate our learnings in its first year of existence.</p><p>In April 2022 we issued a call for applications. Members were selected based on predefined criteria (patient experience, participation motivation, age, gender). We did one online survey at the beginning (expectations about the work as APC members) and one at the end of the APC's first year (experiences and satisfaction). Furthermore, we heard intermediate feedback and did 5 individual interviews with members to collect more structured feedback.</p><p>We received 44 applications and invited 18 members fitting the predefined criteria. We selected 10 men and 8 women, aged 27 to 78 (mean 50.4 years) from 5 federal provinces with a variety of lived patient experiences. Although, we headed for a mixed group, only formally highly educated persons that are moreover very eager to be empowered applied. After the kick-off in May 2022, we gathered quarterly and did three educational workshops.</p><p>Thanks to the LBG OIS Center funding, we could remunerate the council members' work. The evaluation shows that the success of the first cycle was facilitated by discussing interesting topics, good time management, joint activities and very little administrative effort for the members. After the completion of the first year in April 2023, 13 council members showed an active interest in further activity.</p&gt