BackgroundOver the last 10 years, patient engagement in health research has emerged as the next evolution in healthcare research. However, limited evidence about the clear role and scope of patient engagement in health research and a lack of evidence about its impact have influenced the uptake, implementation and ongoing evolution of patient engagement. The present study aims to conduct a scoping review to identify methods for and outcomes of patient engagement in health research.MethodsAn adaptation of the scoping review methodology originally described by Arksey and O’Malley and updated by Levac, Colquhoun and O’Brien was applied. Sources from a formal database search and relevant documents from a grey literature search were compiled into data extraction tables. Articles were synthesised into key themes according to the (1) methods and (2) outcomes of patient engagement in health research.ResultsThe total yield for the scoping review was 55 records from across Canada, the United Kingdom and the United States. While evidence about the methods used to engage patients in health research is increasing, stronger evidence of specific patient and healthcare system outcomes is required. This necessitates further mobilisation of research that explores outcomes and that validates specific tools to evaluate engagement. Additionally, theoretical frameworks that can better inform and sustain patient engagement across the lifecycle of health research are lacking.ConclusionFurther increasing the volume and reach of evidence about patient engagement in health research will support the paradigmatic shift needed to normalise the patient’s role in research beyond ‘subject’ or ‘participant’, so as to ultimately improve patient health outcomes and better address healthcare reform in Canada.

BackgroundCurrent research suggests that while patients are becoming more engaged across the health delivery spectrum, this involvement occurs most often at the pre-preparation stage to identify ‘high-level’ priorities in health ecosystem priority setting, and at the preparation phase for health research.ObjectiveThe purpose of this systematic rapid review of the literature is to describe the evidence that does exist in relation to patient and public engagement priority setting in both health ecosystem and health research.Data sourcesHealthStar (via OVID); CINAHL; Proquest Databases; and Scholar’s Portal.Study eligibility criteriai) published in English; ii) published within the timeframe of 2007—Current (10 years) unless the report/article was formative in synthesizing key considerations of patient engagement in health ecosystem and health research priority setting; iii) conducted in Canada, the US, Europe, UK, Australia/New Zealand, or Scandinavian countries.Study appraisal and synthesisi) Is the research valid, sound, and applicable?; ii) what outcomes can we potentially expect if we implement the findings from this research?; iii) will the target population (i.e., health researchers and practitioners) be able to use this research?. A summary of findings from each of the respective processes was synthesized to highlight key information that would support decision-making for researchers when determining the best priority setting process to apply for their specific patient-oriented research.ResultsSeventy articles from the UK, US, Canada, Netherlands and Australia were selected for review. Results were organized into two tiers of public and patient engagement in prioritization: Tier 1—Deliberative and Tier 2—Consultative. Highly structured patient and public engagement planning activities include the James Lind Alliance Priority Setting Partnerships (UK), Dialogue Method (Netherlands), Global Evidence Mapping (Australia), and the Deep Inclusion Method/CHoosing All Together (US).LimitationsThe critical study limitations include challenges in comprehensively identifying the patient engagement literature for review, bias in article selection due to the identified scope, missed information due to a more limited use of exhaustive search strategies (e.g., in-depth hand searching), and the heterogeneity of reported study findings.ConclusionThe four public and patient engagement priority setting processes identified were successful in setting priorities that are inclusive and objectively based, specific to the priorities of stakeholders engaged in the process. The processes were robust, strategic and aimed to promote equity in patient voices. Key limitations identified a lack of evaluation data on the success and extent in which patients were engaged. Issues pertaining to feasibility of stakeholder engagement, coordination, communication and limited resources were also considered.

Researchers have identified the needs of family members of critically ill adults, explored their experiences, and investigated interventions. To address a gap in the theoretical knowledge about how nurses help these individuals, the authors developed a grounded theory of nursing support from the perspective of family members. Results indicated that family members were initiated into a cycle of Work to meet perceived responsibilities to Get Through the experience. Supportive nurses engaged in the process of Lightening Our Load to mitigate the negative effects of the critical care experience on family members by Engaging With Us, Sustaining Us, and Disengaging From Us. No previous research has yet identified the Work of these family members, the steps they take to gain nurses' respect, and the significance to them of nurses' Welcoming us and Saying goodbye. This theory extends the understanding of nursing support beyond current knowledge of family needs, caring, comfort, supportive care, and social support.

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