Patient-centred outcomes research: perspectives of patient stakeholders

OBJECTIVE: To elicit patient stakeholders’ experience and perspectives about patient-centred care. DESIGN: Qualitative. SETTING: A large urban healthcare system. PARTICIPANTS: Four patient stakeholders who are prostate cancer survivors. MAIN OUTCOME MEASURES: Experience and perspectives of patient stakeholders regarding patient-centred care and treatment decisions. RESULTS: Our patient stakeholders represented a diverse socio-demographic group. The patient stakeholders identified engagement and dialogue with physicians as crucial elements of patient-centred care model. The degree of patient-centred care was observed to be dependent on the situations. High severity conditions warranted a higher level of patient involvement, compared to mild conditions. They agreed that patient-centred care should not mean that patients can demand inappropriate treatments. CONCLUSIONS: An important attribute of patient-centred outcomes research model is the involvement of stakeholders. However, we have limited knowledge about the experience of patient stakeholders in patient-centred outcomes research. Our study indicates that patient stakeholders offer a unique perspective as researchers and policy-makers aim to precisely define patient-centred research and care.