Family practice
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In order to maximize the benefits of community-based participatory research, effective ownership over the research process must be at least equally in the hands of the community. A previous social network analysis documented that the participatory research process shifted ownership from academic to community partners, but did not show what actions and strategies fostered this shift. ⋯ Although communities must take ownership over the research process to assure sustained action and change, a strong, trusted and accepted outside champion who actively enacts participatory engagement strategies can facilitate the participatory process and provide community stakeholders the time and support they need to achieve meaningful and sustained leadership roles. These findings have implications for how partnership research is designed and implemented, both in community and in clinical organisational settings.
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Patient engagement is a fundamental strategy for achieving patient centred care and is receiving increasing attention in primary care reform efforts such as the patient-centred medical home and related care models. Much of the prior published theory and evidence supporting patient engagement has focused on improving engagement in individual care. Much less is understood about engaging patients as partners in practice improvement at the primary care clinic or practice level. ⋯ We conclude that while there are persuasive ethical and social justice reasons for empowering patient involvement in practice improvement at the clinic level, research conducted to date in primary care provides suggestive but not yet resounding evidence in support of the instrumental triple aim benefit of practice-level patient engagement. We propose a research agenda to better understand the process and outcomes of practice-level patient engagement and its potential advantages to both the practice and the patients and communities served. Better evidence as well as resources to support and incentivize effective and feasible engagement methods are needed to catalyse greater diffusion of practice-level patient engagement in primary care practices.
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Engagement of patient and advocacy group stakeholders is increasingly considered essential to meaningful outcomes research. Patient-centred research benefits from partnership formation between patients, clinicians and research team members. Here, we describe the rationale for engaging patients on a research team and a case study of patient engagement on an asthma shared decision-making study. ⋯ For the case study described, patient engagement directly influenced multiple aspects of the study, including study design, implementation, data analysis and dissemination through incorporation of the patients' and caregivers' input and concerns.
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There are increasing imperatives for patients and members of the public to engage as partners in identifying health research priorities. The use of participatory methods to engage stakeholders in health care in research prioritization is not commonly reported. ⋯ The World Café is a valuable, participatory, flexible method that can be used with community and health care stakeholders for research prioritization with marginalized communities.