193 research outputs found
Improving young people's engagement with science, technology, engineering and mathematics (STEM)
Skills shortages in STEM sectors represent a real threat to the UK’s capacity for growth. Even in the current recessionary period, employers cannot find enough future employees suitably qualified in STEM to meet demand. Although young people value mathematics and science education, many do not study STEM subjects beyond GCSE and too few are currently inspired by STEM to pursue such choices beyond compulsory education. This paper, published to coincide with Science and Engineering Week 2013, presents NFER’s research evidence about what works to encourage further engagement in, and take-up of, STEM subjects. NFER calls on policymakers, schools, colleges, STEM employers, professional bodies and the research community to work together to ensure that successful strategies become more widespread
Young people's views about the purpose and composition of research ethics committees:findings from the PEARL qualitative study
BACKGROUND: Avon Longitudinal Study of Parents and Children (ALSPAC) is a birth cohort study within which the Project to Enhance ALSPAC through Record Linkage (PEARL) was established to enrich the ALSPAC resource through linkage between ALSPAC participants and routine sources of health and social data. PEARL incorporated qualitative research to seek the views of young people about data linkage, including their opinions about appropriate safeguards and research governance. In this paper we focus on views expressed about the purpose and composition of research ethics committees. METHODS: Digitally recorded interviews were conducted with 48 participants aged 17–19 years. Participants were asked about whether medical research should be monitored and controlled, their knowledge of research ethics committees, who should sit on these committees and what their role should be. Interview recordings were fully transcribed and anonymised. Thematic analysis was undertaken, assisted by the Framework approach to data management. RESULTS: The majority of interviewees had little or no specific knowledge of ethics committees. Once given basic information about research ethics committees, only three respondents suggested there was no need for such bodies to scrutinise research. The key tasks of ethics committees were identified as monitoring the research process and protecting research participants. The difficulty of balancing the potential to inhibit research against the need to protect research participants was acknowledged. The importance of relevant research and professional expertise was identified but it was also considered important to represent wider public opinion, and to counter the bias potentially associated with self-selection possibly through a selection process similar to ‘jury duty’. CONCLUSIONS: There is a need for more education and public awareness about the role and composition of research ethics committees. Despite an initial lack of knowledge, interviewees were able to contribute their ideas and balance the rights of individuals with the wider benefits from research. The suggestion that public opinion should be represented through random selection similar to jury duty may be worth pursuing in the light of the need to ensure diversity of opinion and establish trust amongst the general public about the use of ‘big data’ for the wider public good
Low cancer suspicion following experience of a cancer 'warning sign'
© 2015 The Authors. Published by Elsevier Ltd. Aim Lower socioeconomic status (SES) is associated with a higher risk of late-stage cancer diagnosis. A number of explanations have been advanced for this, but one which has attracted recent attention is lower patient knowledge of cancer warning signs, leading to delay in help-seeking. However, although there is psychometric evidence of SES differences in knowledge of cancer symptoms, no studies have examined differences in 'cancer suspicion' among people who are actually experiencing a classic warning sign. Methods A 'health survey' was mailed to 9771 adults (≥50 years, no cancer diagnosis) with a symptom list including 10 cancer 'warning signs'. Respondents were asked if they had experienced any of the symptoms in the past 3 months, and if so, were asked 'what do you think caused it?' Any mention of cancer was scored as 'cancer suspicion'. SES was indexed by education. Results Nearly half the respondents (1732/3756) had experienced a 'warning sign', but only 63/1732 (3.6%) mentioned cancer as a possible cause. Lower education was associated with lower likelihood of cancer suspicion: 2.6% of respondents with school-only education versus 7.3% with university education suspected cancer as a possible cause. In multivariable analysis, low education was the only demographic variable independently associated with lower cancer suspicion (odds ratio (OR) = 0.34, confidence interval (CI): 0.20-0.59). Conclusion Levels of cancer suspicion were low overall in this community sample, and even lower in people from less educated backgrounds. This may hinder early symptomatic presentation and contribute to inequalities in stage at diagnosis
Young people's views about consenting to data linkage:findings from the PEARL qualitative study
Abstract Background Electronic administrative data exist in several domains which, if linked, are potentially useful for research. However, benefits from data linkage should be considered alongside risks such as the threat to privacy. Avon Longitudinal Study of Parents and Children (ALSPAC) is a birth cohort study. The Project to Enhance ALSPAC through Record Linkage (PEARL) was established to enrich the ALSPAC resource through linkage between ALSPAC participants and routine sources of health and social data. Qualitative research was incorporated in the PEARL study to examine participants’ views about data linkage and inform approaches to information sharing. This paper focusses on issues of consent. Methods Digitally recorded interviews were conducted with 55 participants aged 17–19 years. Terms and processes relating to consent, anonymization and data linkage were explained to interviewees. Scenarios were used to prompt consideration of linking different sources of data, and whether consent should be requested. Interview recordings were fully transcribed. Thematic analysis was undertaken using the Framework approach. Results Participant views on data linkage appeared to be most influenced by: considerations around the social sensitivity of the research question, and; the possibility of tangible health benefits in the public interest. Some participants appeared unsure about the effectiveness of anonymization, or did not always view effective anonymization as making consent unnecessary. This was related to notions of ownership of personal information and etiquette around asking permission for secondary use. Despite different consent procedures being explained, participants tended to equate consent with ‘opt-in’ consent through which participants are ‘asked’ if their data can be used for a specific study. Participants raising similar concerns came to differing conclusions about whether consent was needed. Views changed when presented with different scenarios, and were sometimes inconsistent. Conclusions Findings from this study question the validity of ‘informed consent’ as a cornerstone of good governance, and the extent to which potential research participants understand different types of consent and what they are consenting, or not consenting, to. Pragmatic, imaginative and flexible approaches are needed if research using data linkage is to successfully realise its potential for public good without undermining public trust in the research process
Secondary analyses to test the impact on inequalities and uptake of the schools-based human papillomavirus (HPV) vaccination programme by stage of implementation of a new consent policy in the south-west of England
Objectives To test the impact on inequalities and uptake of the schools-based human papillomavirus (HPV) vaccination programme by stage of implementation of a new policy providing additional opportunities to consent.Setting Two local authorities in the south-west of England.Participants Young women (n=7129) routinely eligible for HPV vaccination aged 12–13 years during the intervention period (2017/2018 to 2018/2019 programme years).Interventions Local policy change that included additional opportunities to provide consent (parental verbal consent and adolescent self-consent).Outcomes Secondary analyses of cross-sectional intervention data were undertaken to examine uptake by: (1) receipt of parental written consent forms and; (2) percentage of unvaccinated young women by stage of implementation.Results During the intervention period, 6341 (89.0%) eligible young women initiated the HPV vaccination series. Parental written consent forms were less likely to be returned where young women attended alternative education provider settings (p<0.001), belonged to non-white British ethnic groups (p<0.01) or more deprived quintiles (p<0.001). Implementation of parental verbal consent and adolescent self-consent reduced the percentage of unvaccinated young women from 21.3% to 16.5% (risk difference: 4.8%). The effect was greater for young women belonging to the most deprived compared with the least deprived quintile (risk difference: 7.4% vs 2.3%, p<0.001), and for young women classified as Unknown ethnic category compared with white British young women (6.7% vs 4.2%, p<0.001). No difference was found for non-white British young women (5.4%, p<0.21).Conclusions Local policy change to consent procedures that allowed parents to consent verbally and adolescents to self-consent overcame some of the barriers to vaccination of young women belonging to families less likely to respond to paper-based methods of gaining consent and at greater risk of developing cervical cancer.Trial registration number 49 086 105
Implementing PODS (Patient Oriented Discharge Summary) in an acute medical urban health setting in Vancouver, Canada
The transition from hospital to home or community is a vulnerable time for patients and families, who face risks associated with misunderstanding instructions about medications, self-monitoring and when to seek emergency care. The quality of the discharge process can have a significant impact on patient confidence, overall patient experience, ability to manage health at home, and hospital readmission rates. Patient Oriented Discharge Summary (PODS) is a standardized form and set of process changes, utilized to overcome communication barriers faced at discharge. We implemented PODS in two Acute Medicine units of a tertiary care hospital in western Canada and used a mixed-methods approach to evaluate the four process changes (PODS form, use of teach-back, engagement of caregivers in discharge teaching, follow-up phone calls). Evaluation showed that 60% of patients received PODS and 87% found the form helpful. There was a large increase in the percentage of patients who felt adequately prepared at the time of discharge, and a 10% increase in the number of patients who rated their overall hospital experience positively. Healthcare providers reported that using PODS they were more confident that patients were adequately prepared to return home. The update of PODS on the implementation units has been sustained at 60% for 18 months. Implementation of the PODS form and process can be accomplished with an interdisciplinary team, leadership support and by working closely with Patient Family Partners. PODS can improve the discharge process even in the complex urban acute medical environment in ways that offer wide-reaching benefits.
Experience Framework
This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens
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