Background: Major infectious disease outbreaks are a constant threat to human health. Clinical research responses to outbreaks generate evidence to improve outcomes and outbreak control. Experiences from previous epidemics have identified multiple challenges to undertaking timely clinical research responses. This scoping review is a systematic appraisal of political, economic, administrative, regulatory, logistical, ethical and social (PEARLES) challenges to clinical research responses to emergency epidemics and solutions identified to address these. Methods: A scoping review. We searched six databases (MEDLINE, Embase, Global Health, PsycINFO, Scopus and Epistemonikos) for articles published from 2008 to July 2018. We included publications reporting PEARLES challenges to clinical research responses to emerging epidemics and pandemics and solutions identified to address these. Two reviewers screened articles for inclusion, extracted and analysed the data. Results: Of 2678 articles screened, 76 were included. Most presented data relating to the 2014-2016 Ebola virus outbreak or the H1N1 outbreak in 2009. The articles related to clinical research responses in Africa (n = 37), Europe (n = 8), North America (n = 5), Latin America and the Caribbean (n = 3) and Asia (n = 1) and/or globally (n = 22). A wide range of solutions to PEARLES challenges was presented, including a need to strengthen global collaborations and coordination at all levels and develop pre-approved protocols and equitable frameworks, protocols and standards for emergencies. Clinical trial networks and expedited funding and approvals were some solutions implemented. National ownership and community engagement from the outset were a key enabler for delivery. Despite the wide range of recommended solutions, none had been formally evaluated.
BackgroundHealth education materials (HEMs) are widely used in general practice. However, there is little information on the variety of HEMs currently available to patients in the UK, or their preferences for accessing educational materials.AimTo assess patients’ perceptions of HEMs, and the variety and accessibility of these materials.Design and settingCross-sectional study conducted in general practices in Brighton and Hove.MethodAn anonymous questionnaire was distributed to patients in the waiting room (WR). Additionally, an audit was conducted to measure the variety of the HEMs. Results were analysed using binary multiple logistic regression.ResultsIn all, 556 participants (response rate 83.1%) from 19 practices took part. The mean age of participants was 49.3 years (SD ±18.9) and 63% were female. Perceived usefulness of HEMs was associated with reading in the WR using written HEMs, and not having a university degree; noticeability was associated with reading in the WR, and being female; attractiveness was associated with not having a university degree and shorter waiting time. On average, WRs contained 72 posters covering 23 topics, and 53 leaflets covering 24 topics, with many outdated and poorly presented materials of limited accessibility.ConclusionThis study found substantial variation in the amount, topicality, and quality of material available in WRs. As most patients notice HEMs and find them useful, available technology could be better utilised to widen access to HEMs. The introduction of wireless free internet (Wi-Fi) to waiting rooms should provide an opportunity to update this area.
Background Clinical research generates evidence for improving clinical management and control of emerging epidemics. However, experiences from previous disease outbreaks have identified multiple challenges to undertaking necessary clinical research in a timely way. We aimed to identify how political, economic, administrative, regulatory, logistical, ethical, and social (PEARLES) challenges can be overcome to advance clinical research preparedness and responses to emerging epidemics by searching the literature.Methods In this systematic review, we searched six databases (MEDLINE, Embase, Ovid Global Health, PsycINFO, Scopus, and Epistemonikos) for English language articles published between Jan 1, 2008, and July 31, 2018. We included articles about clinical research responses (ie, responses regarding the safety and effectiveness of medications, treatment regimens [including supportive care], devices, or diagnostic products intended for human use) to epidemics that were declared a public health emergency of international concern and that contained up-to-date information. We did not include studies that only focused on public health responses. Two reviewers screened records for inclusion and extracted and summarised the data using a narrative approach. We included publications reporting PEARLES challenges of, and solutions to, the instigation of clinical research responses to emerging epidemics, or solutions identified through research with health system stakeholders. FindingsOf 2678 articles screened for inclusion, 76 articles were included. Most presented clinical research experiences from the 2014-16 Ebola virus disease outbreak (58 [76%]) or the 2009 H1N1 pandemic (20 [26%]), or both. The articles related to studies set in Africa (n=37), Europe (n=8), North America (n=5), Latin America and the Caribbean (n=3), and Asia (n=1); 22 articles covered a global perspective. The publications presented a range of challenges to delivering clinical research. Some were universal, others depended on the context and nature of the outbreak. International agreed frameworks, research protocols and standards, data sharing agreements, ethical publication standards, and incentivised, primed, global clinical research networks were among the solutions recommended, together with national ownership and community engagement from the outset and strengthening of country research capacity. Despite the wide range of recommended solutions, none had been formally evaluated.Interpretation To strengthen global preparedness to emerging epidemics, solutions for rapid clinical research deployment, delivery, and dissemination must be developed, implemented, and evaluated. Improvements are urgently needed to develop and strengthen collaborations, funding mechanisms, global and national research capacity, preapproved protocols, tools, and frameworks for various contexts and scenarios. Clinical research communities globally need to evaluate their activities and refine and rehearse outbreak research response plans in between epidemics.
BackgroundMore than half of patients in the UK wait between 5 and 15 minutes before seeing the GP, and this time in the waiting room (WR) provides an ideal opportunity for patient education.AimTo assess patients’ perceptions of the usefulness, noticeability and attractiveness of health education materials (HEMs); and the variety, number, topics, design and accessibility of these HEMs.MethodAn anonymous questionnaire was distributed to patients in the WR to assess their use of health information and perceptions of HEMs. A survey measured the availability of HEMs in the WR and evaluated their quality against 16 accessibility and design criteria.ResultsA total of 556 questionnaires were completed (response rate 97.9%). On average, WRs contained 72 posters covering 23 topics, and 53 leaflets covering 24 topics. Multivariate analysis showed that patients’ perception of usefulness was significantly associated with reading in the WR, using written HEMs, and not having a university degree; whilst noticeability was associated with reading in the WR, and being female. Attractiveness was associated with not having a university degree and shorter waiting time.ConclusionThis study suggests that a wide variety of HEMs are available, and that many patients find them useful and noticeable, however, fewer find them well-designed and attractive. Future research should focus on the effectiveness of generally available HEMs at changing knowledge, attitudes, intentions, and behaviours; and utilising technology to deliver innovative means of providing patient health information.
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