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Background: Health systems are recommended to capture routine patient sociodemographic data as a key step in providing equitable person‐centred care. However, collection of this information has the potential to cause harm, especially for vulnerable or potentially disadvantaged patients. Objective: To identify harms perceived or experienced by patients, their families, or health‐care providers from collection of sociodemographic information during routine health‐care visits and to identify best practices for when, by whom and how to collect this information. Search Strategy: We searched OVID MEDLINE, PubMed "related articles" via NLM and healthevidence.org to the end of January 2018 and assessed reference lists and related citations of included studies. Inclusion Criteria: We included studies reporting on harms of collecting patient sociodemographic information in health‐care settings. Data Extraction and Synthesis: Data on study characteristics and types of harms were extracted and summarized narratively. Main Results: Eighteen studies were included; 13 provided patient perceptions or experiences with the collection of these data and seven studies reported on provider perceptions. Five reported on patient recommendations for collecting sociodemographic information. Patients and providers reported similar potential harms which were grouped into the following themes: altered behaviour which may affect care‐seeking, data misuse or privacy concerns, discomfort, discrimination, offence or negative reactions, and quality of care. Patients suggested that sociodemographic information be collected face to face by a physician. Discussion and Conclusions: Overall, patients support the collection of sociodemographic information. However, harms are possible, especially for some population subgroups. Harms may be mitigated by providing a rationale for the collection of this information. [ABSTRACT FROM AUTHOR]

Objectives: To evaluate a new format of a summary, which presents research from synthesized evidence to patients and the public. Study Design And Setting: We conducted a randomized controlled trial in 143 members of the public from five countries (Canada, Norway, Spain, Argentina, and Italy). Participants received either a new summary format (a plain language summary [PLS]) or the current format used in Cochrane systematic reviews. The new PLS presents information about the condition and intervention, a narrative summary of results, and a table of results with absolute numbers for effects of the intervention and quality of the evidence using Grading of Recommendations Assessment, Development, and Evaluation. Results: With the new PLS, more participants understood the benefits and harms and quality of evidence (53% vs. 18%, P < 0.001); more answered each of the five questions correctly (P ≤ 0.001 for four questions); and they answered more questions correctly, median 3 (interquartile range [IQR]: 1-4) vs. 1 (IQR: 0-1), P < 0.001). Better understanding was independent of education level. More participants found information in the new PLS reliable, easy to find, easy to understand, and presented in a way that helped make decisions. Overall, participants preferred the new PLS. Conclusion: This new PLS format for patients and the public is a promising tool to translate evidence from synthesized research. [ABSTRACT FROM AUTHOR]

Introduction As standardized reporting requirements for systematic reviews are being adopted more widely, review authors are under greater pressure to accurately record their search process. With careful planning, documentation to fulfill the Preferred Reporting Items for Systematic Reviews and Meta-Analyses requirements can become a valuable tool for organizing a systematic review literature search and planning updates. Methods A working group of information specialists convened to discuss current practice and were informed by a Web-based survey of over 260 systematic review authors, trials search coordinators, librarians, and other information specialists conducted in February/March 2011. Discussion Survey responses provided insight into current practices and difficulties of reporting searches. These included a lack of time, tools, clear understanding of the requirements, and uncertainty about responsibility for documenting these elements. This paper will present some of the practical aspects of documenting the systematic literature search. Section 1 provides background information and rationale for this paper. Section 2 discusses issues and recommendations arising from survey results. Section 3 outlines specific elements to be recorded. Section 4 guides the reader through the information management process. Section 5 concludes with implications for future research and practice. These principles are applicable to any large literature search for systematic reviews, health technology assessments, and guideline development. Copyright © 2013 John Wiley & Sons, Ltd. [ABSTRACT FROM AUTHOR]

Plain English summary: With the growing movement to engage patients in research, questions are being asked about who is engaging patients and how they are being engaged. Internationally, research groups are supporting and funding patient-oriented research studies that engage patients in the identification of research priorities and the design, conduct and uptake of research. As we move forward, we need to know what meaningful patient engagement looks like, how it benefits research and clinical practice, and what are the barriers to patient engagement? We conducted a review of the published literature looking for trials that report engaging patients in the research. We included both randomized controlled trials and non-randomized comparative trials. We looked at these trials for important study characteristics, including how patients were engaged, to better understand the practices used in trials. Importantly, we also discuss the number of trials reporting patient engagement practices relative to all published trials. We found that very few trials report any patient engagement activities even though it is widely supported by many major funding organizations. The findings of our work will advance patient-oriented research by showing how patients can be engaged and by stressing that patient engagement practices need to be better reported. Background: Patient-Oriented Research (POR) is research informed by patients and is centred on what is of importance to them. A fundamental component of POR is that patients are included as an integral part of the research process from conception to dissemination and implementation, and by extension, across the research continuum from basic research to pragmatic trials [J Comp Eff Res 2012, 1:181–94, JAMA 2012, 307:1587–8]. Since POR's inception, questions have been raised as to how best to achieve this goal. We conducted a systematic review of randomized controlled trials and non-randomized comparative trials that report engaging patients in their research. Our main goal was to describe the characteristics of published trials engaging patients in research, and to identify the extent of patient engagement activities reported in these trials. Methods: The MEDLINE®, EMBASE®, Cinahl, PsycINFO, Cochrane Methodology Registry, and Pubmed were searched from May 2011 to June 16th, 2016. Title, abstract and full text screening of all reports were conducted independently by two reviewers. Data were extracted from included trials by one reviewer and verified by a second. All trials that report patient engagement for the purposes of research were included. Results: Of the 9490 citations retrieved, 2777 were reviewed at full text, of which 23 trials were included. Out of the 23 trials, 17 were randomized control trials, and six were non-randomized comparative trials. The majority of these trials (83%, 19/23) originated in the United States and United Kingdom. The trials engaged a range of 2-24 patients/ community representatives per study. Engagement of children and minorities occurred in 13% (3/23) and 26% (6/23) of trials; respectively. Engagement was identified in the development of the research question, the selection of study outcomes, and the dissemination and implementation of results. Conclusions: The prevalence of patient engagement in patient-oriented interventional research is very poor with 23 trials reporting activities engaging patients. Research dedicated to determining the best practice for meaningful engagement is still needed, but adequate reporting measures also need to be defined. [ABSTRACT FROM AUTHOR]

Abstract: Objective: This article reports on literature surveillance methods to identify new evidence eligible for updating systematic reviews. Study Design and Setting: Five surveillance search approaches are tested in the context of identifying studies that would signal major or invalidating new evidence for existing systematic reviews of health care interventions. Recall for each search approach was assessed as proportion of a composite yield of relevant studies across all search approaches that were identified by that approach. Screening burden was the number of studies that would need to be reviewed to identify the evidence that would necessitate updating. Results: Searches were tested in a cohort of 77 systematic reviews. No one method yielded consistently high recall of relevant new evidence, so combinations of the strategies were examined. A search algorithm based on PubMed''s related article search in combination with a subject searching using clinical queries was the most effective combination, retrieving all relevant new records in 68 cases. Screening burden was a median of 71 new records per review (inter-quartile range: 42–161). Conclusion: Surveillance for emerging evidence that signals the need to update systematic reviews is feasible using a combination of subject searching and searching based on the PubMed''s related article function. [Copyright &y& Elsevier]