The patient participation puzzle: Organizing patient participation in health care networks

Health care is increasingly organized in interorganizational networks, with patient participation gaining prominence to better tailor care to patient needs. However, these often occur independently, limiting understanding of how to organize interorganizational patient participation. Poorly implemented participation risks draining time and energy from vulnerable groups without creating meaningful change.

We conducted an in-depth case study of a multihospital network, using 23 semistructured interviews with patients, health care staff, and network administrators, 77 hours of observations, and 276 documents to explore how interorganizational patient participation functions.

Our findings reveal the patient participation puzzle : the tension between the aspiration for patient participation at all interorganizational levels and its potential burden and unclear impact. Four interrelated themes emerged: aim, organizational structure, participant attributes, and impact. We distinguished participation within the network's operational level, closely tied to care delivery, and in network strategy, where patients' contributions are less clearly defined.

Patient participation in network strategy often lacks clear aims, leaving patients' roles unclear and imposing undue burden. Key participant attributes like experiences and perspectives influence engagement but can also pose challenges. Participation's impact is not inherent; without clear aims, structures, and roles, it risks becoming symbolic and burdensome without meaningful impact.

Organizing patient participation in health care networks is quite the puzzle. To avoid window dressing, network managers should acknowledge patient burden, set clear goals, act on patient input, and organize carefully to prevent tokenism. Accreditation bodies and policymakers should prioritize guidance and support over mandates to ensure meaningful impact.