Integrating Patient‐reported Experience (PRE) in a multistage approach to study access to health services for women with chronic illness and migration experience

Abstract

Background: Patient-reported Experience (PRE) is an emerging concept integrating patient perspectives and amplifying voices often marginalized in discussions surrounding health systems. However, it remains a challenge to use and integrate PREs when studying patient agency and access to quality services, particularly with data from multiple sources. In this article, using study materials from the Swiss MIWOCA project, we present and reflect upon a multistage PRE approach to study healthcare access. Methods:The MIWOCA project, a study on healthcare access and quality among immigrant women with chronic illnesses living in Switzerland, provided data from multiple sources for the integration of PRE data. These sources included interviews with women (n = 48), two focus group discussions with women (n = 15), interviews with service providers (n = 12) and observations from stakeholder dialogues (n = 3). In addition, we utilized field notes, focus group illustration maps, patient vignettes and policy briefs to develop a multistage data linking model. PRE data served as starting themes and reference topics in each of the interlinked stages of knowledge production.Results: Deploying PREs, we coherently linked the data from preceding stages and used them to inform subsequent stages. This, in turn, enabled us to identify, reflect and rectify factors limiting immigrant women's agency and access to quality services. Ultimately, the approach engaged patients as knowledge co-producers for system-level changes. This knowledge was transformed into a set of practice recommendations and a policy brief addressing ways to improve health systems to better serve immigrant women in Switzerland.Conclusions: Building on PREs to systematically combine multiple data sources and engage patients continuously can improve our understanding of barriers in health systems. Beyond individual patient-doctor encounters, a multistage PRE approach can identify structural problems and provide clues for resolving them at the systems

Between data providers and concerned citizens: Exploring participation in precision public health in Switzerland

“…The term “participation” can refer to “scientific participation,” as the “population” under study, a collection of individuals providing data and biological samples for research purposes, but also to “public participation,” referring to the political body engaged in the governance of biomedical research (Bühler et al, 2019; Tupasela et al, 2015). Participatory approaches are part of a broader movement in biomedicine and public health that attempts to recognize citizens’ and patients “subject” status, their experiential knowledge (Rabeharisoa et al, 2014), and “civic epistemologies” (Jasanoff, 2012), thereby marking a shift away from biomedicalization toward a more integrative model of medicine (Abel et al, 2023; Panese, 2022). The rationales for public and patient involvement (PPI) are diverse and have evolved over time (Stilgoe et al, 2014), shifting from a deficit model interpreting debates and resistance to technological innovations and science in terms of lack of knowledge to an upstream engagement model promoting meaningful dialogue between experts and the “lay” public (Joly and Kaufmann, 2008).…”