Patient and service user engagement in research: a systematic review and synthesized framework

BackgroundThere is growing attention towards increasing patient and service user engagement (PSUE) in biomedical and health services research. Existing variations in language and design inhibit reporting and indexing, which are crucial to comparative effectiveness in determining best practices.ObjectiveThis paper utilizes a systematic review and environmental scan to derive an evidence‐based framework for PSUE.DesignA metanarrative systematic review and environmental scan/manual search using scientific databases and other search engines, along with feedback from a patient advisory group (PAG).Eligible sourcesEnglish‐language studies, commentaries, grey literature and other sources (including systematic and non‐systematic reviews) pertaining to patient and public involvement in biomedical and health services research.Data extractedStudy description (e.g. participant demographics, research setting) and design, if applicable; frameworks, conceptualizations or planning schemes for PSUE‐related endeavours; and methods for PSUE initiation and gathering patients'/service users' input or contributions.ResultsOverall, 202 sources were included and met eligibility criteria; 41 of these presented some framework or conceptualization of PSUE. Sources were synthesized into a two‐part framework for PSUE: (i) integral PSUE components include patient and service user initiation, reciprocal relationships, colearning and re‐assessment and feedback, (ii) sources describe PSUE at several research stages, within three larger phases: preparatory, execution and translational.Discussion and ConclusionsEfforts at developing a solid evidence base on PSUE are limited by the non‐standard and non‐empirical nature of much of the literature. Our proposed two‐part framework provides a standard structure and language for reporting and indexing to support comparative effectiveness and optimize PSUE.Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/113737/1/hex12090.pd

ReseArch with Patient and Public invOlvement: a RealisT evaluation - the RAPPORT study

Background Patient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research. Objectives To determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified. Design A three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England. Participants Non-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks

Nursing research: the Australian College of Nursing position statement

[Extract] Nursing perspectives play an important role in addressing the health priorities of today's society. The Australian College of Nursing (ACN) acknowledges the significant contribution that nursing research has made since the first nurse researcher,Florence Nightingale, documented the factors that affected the morbidity and mortality of soldiers wounded in the Crimean war in the 1800s. The nursing profession continues to celebrate the significant contribution nursing research made to improving nursing practice and health outcomes