Synthesising conceptual frameworks for patient and public involvement in research - A critical appraisal of a meta-narrative review

© 2018 The Author(s). Background: A number of conceptual frameworks for patient and public involvement (PPI) in research have been published in recent years. Although some are based on empirical research and/or existing theory, in many cases the basis of the conceptual frameworks is not evident. In 2015 a systematic review was published by a collaborative review group reporting a meta-narrative approach to synthesise a conceptual framework for PPI in research (hereafter 'the synthesis'). As the first such synthesis it is important to critically scrutinise this meta-narrative review. The 'RAMESES publication standards for meta-narrative reviews' provide a framework for critically appraising published meta-narrative reviews such as this synthesis, although we recognise that these were published concurrently. Thus the primary objective of this research was to appraise this synthesis of conceptual frameworks for PPI in research in order to inform future conceptualisation. Methods: Four researchers critically appraised the synthesis using the RAMESES publication standards as a framework for assessment. Data were extracted independently using a data extraction form closely based on the RAMESES publication standards. Each item from the standards was assessed on a four point scale (0 = unmet, 1 = minimally met, 2 = partly met, 3 = fully met). The four critical appraisals were then compared and any differences resolved through discussion. Results: A good degree of inter-rater reliability was found. A consensus assessment of the synthesis as a meta-narrative review of PPI conceptual frameworks was achieved with an average of '1' (minimally met) across all 20 items. Two key items ('evidence of adherence to guiding principles of meta-narrative review' and 'analysis and synthesis processes') were both wholly unmet. Therefore the paper did not meet our minimum requirements for a meta-narrative review. We found the RAMESES publication standards were a useful tool for carrying out a critical appraisal although some minor improvements are suggested. Conclusions: Although the aims of the authors' synthesis were commendable, and the conceptual framework presented was coherent and attractive, the paper did not demonstrate a transparent and replicable meta-narrative review approach. There is a continuing need for a more rigorous synthesis of conceptual frameworks for PPI

Reliability and validity of the Safe Routes to school parent and student surveys

Abstract Background The purpose of this study is to assess the reliability and validity of the U.S. National Center for Safe Routes to School's in-class student travel tallies and written parent surveys. Over 65,000 tallies and 374,000 parent surveys have been completed, but no published studies have examined their measurement properties. Methods Students and parents from two Charlotte, NC (USA) elementary schools participated. Tallies were conducted on two consecutive days using a hand-raising protocol; on day two students were also asked to recall the previous days' travel. The recall from day two was compared with day one to assess 24-hour test-retest reliability. Convergent validity was assessed by comparing parent-reports of students' travel mode with student-reports of travel mode. Two-week test-retest reliability of the parent survey was assessed by comparing within-parent responses. Reliability and validity were assessed using kappa statistics. Results A total of 542 students participated in the in-class student travel tally reliability assessment and 262 parent-student dyads participated in the validity assessment. Reliability was high for travel to and from school (kappa > 0.8); convergent validity was lower but still high (kappa > 0.75). There were no differences by student grade level. Two-week test-retest reliability of the parent survey (n = 112) ranged from moderate to very high for objective questions on travel mode and travel times (kappa range: 0.62 - 0.97) but was substantially lower for subjective assessments of barriers to walking to school (kappa range: 0.31 - 0.76). Conclusions The student in-class student travel tally exhibited high reliability and validity at all elementary grades. The parent survey had high reliability on questions related to student travel mode, but lower reliability for attitudinal questions identifying barriers to walking to school. Parent survey design should be improved so that responses clearly indicate issues that influence parental decision making in regards to their children's mode of travel to school

Longitudinal Analysis of Adolescent Girls' Activity Patterns: Understanding the Influence of the Transition to Licensure

The proportion of teens and young adults with driver's licenses has declined sharply in many industrialized countries including the United States. Explanations for this decline have ranged from the introduction of graduated driver licensing programs to the increase in online social interaction. We used a longitudinal cohort study of teenage girls in San Diego and Minneapolis to evaluate factors associated with licensure and whether teens' travel patterns become more independent as they aged. We found that licensure depended not only on age, but on race and ethnicity as well as variables that correlate with household income. Results also showed evidence that teen travel became more independent as teen's age, and that acquiring a license is an important part of this increased independence. However, we found limited evidence that teen's travel-activity patterns changed as a result of acquiring a driver's license. Rather, teen independence resulted in less parental chauffeuring, but little shift in travel patterns. For the larger debate on declining Millennial mobility, our results suggest the need for more nuanced attention to variation across demographic groups and consideration of the equity implications if declines in travel and licensure are concentrated in low-income and minority populations

An Avatar-Led Digital Smoking Cessation Program for Sexual and Gender Minority Young Adults: Intervention Development and Results of a Single-Arm Pilot Trial

BACKGROUND: Sexual and gender minority young adults have a high prevalence of smoking and unique barriers to accessing tobacco treatment. OBJECTIVE: To address these challenges as well as their preferences for sexual and gender minority-targeted interventions and digital programs, we developed and evaluated the acceptability, preliminary efficacy, and impact on theory-based change processes of an acceptance and commitment therapy-based digital program called Empowered, Queer, Quitting, and Living (EQQUAL). METHODS: Participants (n=22) of a single-arm trial conducted to evaluate the program were young adults, age 18 to 30 years, who self-identified as sexual and gender minority individuals and smoked at least one cigarette per day. All participants received access to the EQQUAL program. Participants completed web-based surveys at baseline and at a follow-up 2 months after enrollment. We verified self-reported smoking abstinence with biochemical testing; missing data were counted as smoking or using tobacco. RESULTS: For young adults who logged in at least once (n=18), the mean number of log-ins was 5.5 (SD 3.6), mean number of sessions completed was 3.1 (SD 2.6), and 39% (7/18) completed all 6 sessions. Overall, 93% of participants (14/15) were satisfied with the EQQUAL program, 100% (15/15) found it easy to use, and 100% (15/15) said it helped them be clearer about how to quit. Abstinence from smoking or using tobacco was confirmed with biochemical testing for 23% of participants (5/22). Both quantitative and qualitative results suggested a positive overall response to the avatar guide, with areas for future improvement largely centered on the avatar\u27s appearance and movements. CONCLUSIONS: Treatment acceptability of EQQUAL was very promising. The rate of abstinence, which was biochemically confirmed, was 3 times higher than that of the only other digital program to date that has targeted sexual and gender minority young adults and 6 to 13 times higher than those of nontargeted digital smoking interventions among sexual and gender minority young adults. Planned improvements for the next iteration of the program include making the avatar\u27s movements more natural; offering multiple avatar guides with different on characteristics such as race, ethnicity, and gender identity from which to choose; and providing a support forum for users to connect anonymously with peers

Palliative care research centre's move into social media: constructing a framework for ethical research, a consensus paper

Background Social media (SM) have altered the way we live and, for many, the way we die. The information available on even the rarest conditions is vast. Free from restrictions of mobility, time and distance, SM provides a space for people to share experiences of illness, death and dying, and potentially benefit from the emotional and practical support of others n similar positions. The communications that take place in these spaces also create large amounts of ‘data’ which, for any research centre, cannot be ignored. However, for a palliative care research centre the use of this ‘data’ comes with specific ethical dilemmas. Methods This paper details the process that we, as a research, went through in constructing a set of ethical guidelines by which to work. This involved conducting two consensus days; one with researchers from within the centre, and one with the inclusion of external researchers with a specific interest in SM. Results The primary themes that emerged from the consensus meetings includes; SM as a public or private space; the status of open and closed groups; the use of historical data; recruiting participants and obtaining informed consent and problems of anonymity associated with dissemination. Conclusions These are the themes that this paper will focus on prior to setting out the guidelines that we subsequently constructed

Dynamics of the invasive spiny water flea, Bythotrephes longimanus, in Lake Simcoe, Ontario, Canada

The invasion of the nonindigenous zooplankter Bythotrephes longimanus in Lake Simcoe has the potential to impact overall ecosystem functioning, yet there is currently no information regarding the status and dynamics of its population. We used a combination of uni- and multivariate analyses to examine variation in Bythotrephes interannual and seasonal abundance, and life-history characteristics in Lake Simcoe from 1999 to 2007, and we explored the biotic (predators, prey) and/or abiotic (water quality, temperature) factors that may have regulated its population over this period. The mean annual abundance of Bythotrephes varied by an order of magnitude over the period of study and was significantly associated with epilimnetic temperature and prey and predator abundance. Bythotrephes typically appeared in early summer and had 2 seasonal abundance peaks, which varied in magnitude and timing within and among years. August and September Secchi depth and total phosphorus concentration predicted groups of years with similar Bythotrephes phenologies, lending further support to the role of water clarity as a significant component of this visual predator’s habitat in its invaded range. Bythotrephes body size and reproductive patterns also varied seasonally, possibly reflecting the seasonal availability of cladoceran prey, predation pressure from planktivorous fish, or adaptations to avoid unfavourable conditions. Overall, a complex interaction of fish predation, food availability, temperature, and water clarity controlled the dynamics of Bythotrephes in Lake Simcoe. Changes to the Lake Simcoe ecosystem due to Bythotrephes invasion may have important consequences for the ecosystem services provided by the lake and merit further investigation

Transcriptional control of central carbon metabolic flux in Bifidobacteria by two functionally similar, yet distinct LacI-type regulators

peer-reviewedBifdobacteria resident in the gastrointestinal tract (GIT) are subject to constantly changing environmental conditions, which require rapid adjustments in gene expression. Here, we show that two predicted LacI-type transcription factors (TFs), designated AraQ and MalR1, are involved in regulating the central, carbohydrate-associated metabolic pathway (the so-called phosphoketolase pathway or bifd shunt) of the gut commensal Bifdobacterium breve UCC2003. These TFs appear to not only control transcription of genes involved in the bifd shunt and each other, but also seem to commonly and directly afect transcription of other TF-encoding genes, as well as genes related to uptake and metabolism of various carbohydrates. This complex and interactive network of AraQ/MalR1-mediated gene regulation provides previously unknown insights into the governance of carbon metabolism in bifdobacteria

Potential role of miR-9 and miR-223 in recurrent ovarian cancer

<p>Abstract</p> <p>Background</p> <p>MicroRNAs (miRNAs) are small, noncoding RNAs that negatively regulate gene expression by binding to target mRNAs. miRNAs have not been comprehensively studied in recurrent ovarian cancer, yet an incurable disease.</p> <p>Results</p> <p>Using real-time RT-PCR, we obtained distinct miRNA expression profiles between primary and recurrent serous papillary ovarian adenocarcinomas (n = 6) in a subset of samples previously used in a transcriptome approach. Expression levels of top dysregulated miRNA genes, miR-223 and miR-9, were examined using TaqMan PCR in independent cohorts of fresh frozen (n = 18) and FFPE serous ovarian tumours (n = 22). Concordance was observed on TaqMan analysis for miR-223 and miR-9 between the training cohort and the independent test cohorts. Target prediction analysis for the above miRNA "recurrent metastatic signature" identified genes previously validated in our transcriptome study. Common biological pathways well characterised in ovarian cancer were shared by miR-9 and miR-223 lists of predicted target genes. We provide strong evidence that miR-9 acts as a putative tumour suppressor gene in recurrent ovarian cancer. Components of the miRNA processing machinery, such as Dicer and Drosha are not responsible for miRNA deregulation in recurrent ovarian cancer, as deluded by TaqMan and immunohistochemistry.</p> <p>Conclusion</p> <p>We propose a miRNA model for the molecular pathogenesis of recurrent ovarian cancer. Some of the differentially deregulated miRNAs identified correlate with our previous transcriptome findings. Based on integrated transcriptome and miRNA analysis, miR-9 and miR-223 can be of potential importance as biomarkers in recurrent ovarian cancer.</p

Working with public contributors in Parkinson's research: what were the changes, benefits and learnings? A critical reflection from the researcher and public contributor perspective

Introduction: This paper provides a critical reflection from both the researcher and public contributor (PC) perspective on the benefits and the learnings taken from involving PCs in research related to Parkinson's. Approach to Patient and Public Involvement (PPI): This paper reports on how PCs shaped the design and development of the PRIME‐UK research programme study materials through input into information leaflets, consent forms and other patient‐facing documents used across three studies within the PRIME‐UK research programme. The PRIME‐UK research programme is designed to improve the quality of life of people with Parkinson's and this project included three studies: a cross‐sectional study, a randomised control trial and a qualitative study. We captured these impacts using Public Involvement Impact Logs, which provide a framework allowing researchers and PCs to report on the learnings, immediate outcomes and impacts from PPI. For this project, the impact logs enabled us to provide reflections from PCs and researchers on the process of involving ‘the public’ in Parkinson's research. Findings: This paper builds on existing evidence of the range of benefits and challenges that emerge from working with patients and the public in Parkinson's research; this includes reflecting on the changes made to the study materials and benefits for the people involved. Four themes emerged from the reflections that were common to the researchers and PCs; these were the importance of providing a supportive environment; recognition of the benefit of the evaluation of the impact of PPI; acknowledgement that engagement of PPI can make a positive difference to the research process and that timely communication and the use of face‐to‐face communication, where available, is key. Furthermore, we demonstrate how impact logs provide a useful and straightforward tool for evaluating public involvement practices and supporting the feedback process. Conclusion: We offer key recommendations for involving patients and the public in Parkinson's research and suggest approaches that could be implemented to capture the impacts of public involvement. Public Contribution: Public contributors (PCs) were involved in the design and development of the participant information leaflets, consent forms and other patient‐facing documents used for studies within the PRIME‐UK research programme. In addition, PCs evaluated their involvement using impact logs and co‐authored this paper