BackgroundRealizing patient partnership in research requires a shift from patient participation in ancillary roles to engagement as contributing members of research teams. While engaging patient partners is often discussed, impact is rarely measured.ObjectiveOur primary aim was to conduct a scoping review of the impact of patient partnership on research outcomes. The secondary aim was to describe barriers and facilitators to realizing effective partnerships.Search StrategyA comprehensive bibliographic search was undertaken in EBSCO CINAHL, and Embase, MEDLINE and PsycINFO via Ovid. Reference lists of included articles were hand‐searched.Inclusion CriteriaIncluded studies were: (a) related to health care; (b) involved patients or proxies in the research process; and (c) reported results related to impact/evaluation of patient partnership on research outcomes.Data Extraction and SynthesisData were extracted from 14 studies meeting inclusion criteria using a narrative synthesis approach.Main ResultsPatient partners were involved in a range of research activities. Results highlight critical barriers and facilitators for researchers seeking to undertake patient partnerships to be aware of, such as power imbalances between patient partners and researchers, as well as valuing of patient partner roles.DiscussionAddressing power dynamics in patient partner‐researcher relationships and mitigating risks to patient partners through inclusive recruitment and training strategies may contribute towards effective engagement. Further guidance is needed to address evaluation strategies for patient partnerships across the continuum of patient partner involvement in research.ConclusionsResearch teams can employ preparation strategies outlined in this review to support patient partnerships in their work.
Objectives To assess patients' preferred method of consent for the use of information from electronic medical records for research.
Background: Interdisciplinary research has been promoted as an optimal research paradigm in the health sciences, yet little is known about how researchers experience interdisciplinarity in practice. This study sought to determine how interdisciplinary research was conceptualized and operationalized from the researcher's perspective and to better understand how best to facilitate interdisciplinary research success.
Background Working with patients and health care providers to co-design health interventions is gaining global prominence. While co-design of interventions is important for all patients, it is particularly important for older adults who often experience multiple and complex chronic conditions. Persona-scenarios have been used by designers of technology applications. The purpose of this paper is to explore how a modified approach to the persona-scenario method was used to co-design a complex primary health care intervention (Health TAPESTRY) by and for older adults and providers and the value added of this approach. Methods The persona-scenario method involved patient and clinician participants from two academically-linked primary care practices. Local prospective volunteers and community service providers (e.g., home care services, support services) were also recruited. Persona-scenario workshops were facilitated by researchers experienced in qualitative methods. Working mostly in homogenous pairs, participants created a fictitious but authentic persona that represented people like themselves. Core components of the Health TAPESTRY intervention were described. Then, participants created a story (scenario) involving their persona and an aspect of the proposed Health TAPESTRY program (e.g., volunteer roles). Two stages of analysis involved descriptive identification of themes, followed by an interpretive phase to extract possible actions and products related to ideas in each theme. Results Fourteen persona-scenario workshops were held involving patients ( n = 15), healthcare providers/community care providers ( n = 29), community service providers ( n = 12), and volunteers ( n = 14). Fifty themes emerged under four Health TAPESTRY components and a fifth category - patient. Eight cross cutting themes highlighted areas integral to the intervention. In total, 414 actions were identified and 406 products were extracted under the themes, of which 44.8% of the products ( n = 182) were novel. The remaining 224 had been considered by the research team. Conclusions The persona-scenario method drew out feasible novel ideas from stakeholders, which expanded on the research team’s original ideas and highlighted interactions among components and stakeholder groups. Many ideas were integrated into the Health TAPESTRY program’s design and implementation. Persona-scenario method added significant value worthy of the added time it required. This method presents a promising alternative to active engagement of multiple stakeholders in the co-design of complex interventions. Electronic supplementary material The online version of this article (10.1186/s12875-019-1013-9) contains supplementary material, which is available to authorized users.
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