11295: The Patient Participation Predicament: Organizing Patient Participation in Healthcare Networks (session 25467)

Over the past decades, healthcare has increasingly been organized in inter-organizational networks, while patient participation has gained prominence as a way to better tailor care to patient needs and preferences. However, these developments have occurred rather independently, leaving limited understanding of how to organize patient participation at the network level. This in-depth case study explored this issue through 23 semi-structured interviews, combined with 37 hours of observations, and 276 documents for triangulation. A distinction emerged between network-level patient participation in service delivery, closely tied to patient care, and participation in policy, where patients’ contributions are less defined. Four interrelated themes of patient participation at the network level were identified: its aim, the way of organizing, participant attributes, and its impact. Patient participation in network policy often lacks a clear aim, leaving patients’ roles unclear. Additionally, its organization frequently overlooks the implications, sometimes imposing undue burdens on patients. Participant attributes, such as experiences and perspectives, are critical but can also shape challenges. Lastly, its impact on network policy level remains uncertain, and the benefits may not outweigh the burdens, underscoring the need for careful implementation. The results suggest that patient participation at the network policy level risks becoming a symbolic practice that strains patients without meaningful impact at network-level decisions. Ultimately, these findings underscore the patient participation predicament—the tension between the ideal of inclusive patient involvement at all levels and the reality of its potential burdens and unclear impact at the network level. Understanding patient participation practices at this level constitutes an important avenue for future research.

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