Measuring organisational readiness for patient engagement (MORE) : an international online Delphi consensus study

Date of Acceptance: 28/01/2015. © 2015 Oostendorp et al.; licensee BioMed Central. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly credited. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise statedWidespread implementation of patient engagement by organisations and clinical teams is not a reality yet. The aim of this study is to develop a measure of organisational readiness for patient engagement designed to monitor and facilitate a healthcare organisation’s willingness and ability to effectively implement patient engagement in healthcarePeer reviewedFinal Published versio

Meet the researchers: an alternative method of engaging patients with research in mesothelioma.

There are new ways to engage people with science and research but many patient support groups and charitable organisations still hold traditional meetings to provide updates on their activities and to report new developments in their field of interest. These meetings often feature presentations given by medical doctors or, in the case of research-focussed organisations, by research scientists.Receiving feedback from people who are confused and sometimes upset by some types of information, and the way it is presented at meetings, made us think about better ways for researchers to discuss their ideas for new research, or share the findings from completed projects, with patients and members of the public.This article describes a method of public engagement called "Meet the Researchers" that enables people to hear about current trends in research face to face with the researchers planning or conducting it. "Meet the Researchers" is designed to promote discussion and allow questions to be asked in a relaxed and informal way, in small groups, which is less daunting than asking questions in front of a conference audience. The aim is to break down the barriers between researchers and patients, and enable conversations that will lead to meaningful engagement and a better understanding of research. Additionally we aim to improve understanding of how results are passed on to doctors and nurses and translated into improvements in patient care.The method was tested with patients and was rated very highly by them in the feedback they gave. Abstract:Background Innovative approaches to engaging people with science exist but are often framed around interactive events or social media technologies. Notwithstanding the availability of novel approaches, many patient support groups and charitable organisations continue to hold traditional meetings and seminars to provide information and updates on their activities, and report on developments in their field of interest. In the case of research-focussed organisations, these meetings often take the form of presentations delivered by clinical experts or research scientists.Observation of mesothelioma patients, their relatives, friends and carers attending scientific or clinical-themed meetings has shown that they can be confused, and sometimes distressed, by presentations. This can be due to didactic presentations that are not properly targeted to this audience and a lack of a general overview or summary at the end of meetings that would provide some simple take home messages. This experience motivated the development of a less formal method of sharing complex information and ideas in a simplified manner. "Meet the Researchers" aims to make researchers accessible to patients in order to raise awareness and understanding of research and to explain how research translates into, and informs practice. This approach encourages the use of plain English, removes the tendency to rely on PowerPoint slides to convey the message and moreover, provides an opportunity for researchers to hear patients' views. Methods Small groups of participants met face to face with the researchers planning or conducting research into their condition, and discussed the topics in a relaxed and informal way. The researchers spent a minimum of 20-min with each group before moving on to the next. Info-graphics on a portable device or printed hand-outs in plain English were allowed but no formal presentations were made. Results Our method has been evaluated using feedback data from three annual events held from 2016 to 2018: 100% of participants indicated that they liked the format "very much"(76.0%) or "quite a lot"(24.0%); 80.4% found the topics "very interesting" and 75.9% found it "very easy" to ask questions. Free text comments revealed themes of 'hope' and 'altruism'. Researchers also reported benefits from participation such as learning about patient' priorities and networking. Conclusion "Meet the Researchers" provides a unique opportunity for mesothelioma researchers and patients, relatives and carers to interact on a more equal footing. It stimulates discussion, promotes understanding and provides a more informal setting for non-professional participants to ask questions. It is a format that could easily be adapted for use in other conditions

Monitoring the referral system through benchmarking in rural Niger: an evaluation of the functional relation between health centres and the district hospital

BACKGROUND: The main objective of this study is to establish a benchmark for referral rates in rural Niger so as to allow interpretation of routine referral data to assess the performance of the referral system in Niger. METHODS: Strict and controlled application of existing clinical decision trees in a sample of rural health centres allowed the estimation of the corresponding need for and characteristics of curative referrals in rural Niger. Compliance of referral was monitored as well. Need was matched against actual referral in 11 rural districts. The referral patterns were registered so as to get an idea on the types of pathology referred. RESULTS: The referral rate benchmark was set at 2.5 % of patients consulting at the health centre for curative reasons. Niger's rural districts have a referral rate of less than half this benchmark. Acceptability of referrals is low for the population and is adding to the deficient referral system in Niger. Mortality because of under-referral is highest among young children. CONCLUSION: Referral patterns show that the present programme approach to deliver health care leaves a large amount of unmet need for which only comprehensive first and second line health services can provide a proper answer. On the other hand, the benchmark suggests that well functioning health centres can take care of the vast majority of problems patients present with

What constitutes responsiveness of physicians: A qualitative study in rural Bangladesh

Responsiveness entails the social actions by health providers to meet the legitimate expectations of patients. It plays a critical role in ensuring continuity and effectiveness of care within people centered health systems. Given the lack of contextualized research on responsiveness, we qualitatively explored the perceptions of outpatient users and providers regarding what constitute responsiveness in rural Bangladesh. An exploratory study was undertaken in Chuadanga, a southwestern Bangladeshi District, involving in-depth interviews of physicians (n = 17) and users (n = 7), focus group discussions with users (n = 4), and observations of patient provider interactions (three weeks). Analysis was guided by a conceptual framework of responsiveness, which includes friendliness, respecting, informing and guiding, gaining trust and optimizing benefits. In terms of friendliness, patients expected physicians to greet them before starting consultations; even though physicians considered this unusual. Patients also expected physicians to hold social talks during consultations, which was uncommon. With regards to respect patients expected physicians to refrain from disrespecting them in various ways; but also by showing respect explicitly. Patients also had expectations related to informing and guiding: they desired explanation on at least the diagnosis, seriousness of illness, treatment and preventive steps. In gaining trust, patients expected that physicians would refrain from illegal or unethical activities related to patients, e.g., demanding money against free services, bringing patients in own private clinics by brokers (dalals), colluding with diagnostic centers, accepting gifts from pharmaceutical representatives. In terms of optimizing benefits: patients expected that physicians should be financially sensitive and consider individual need of patients. There were multiple dimensions of responsiveness- for some, stakeholders had a consensus; context was an important factor to understand them. This being an exploratory study, further research is recommended to validate the nuances of the findings. It can be a guideline for responsiveness practices, and a tipping point for future research

The deuteron: structure and form factors

A brief review of the history of the discovery of the deuteron in provided. The current status of both experiment and theory for the elastic electron scattering is then presented.Comment: 80 pages, 33 figures, submited to Advances in Nuclear Physic

Ocular medicines in children: the regulatory situation related to clinical research

<p>Abstract</p> <p>Background</p> <p>Many ocular medications are prescribed for paediatric patients, but the evidence for their rational use is very scant. This study was planned to compare the availability and the licensing status of ocular medications marketed in Italy, the United Kingdom (UK), and the United States of America (USA) related to the amount of published and un-published RCTs testing these drugs in the paediatric population.</p> <p>Methods</p> <p>A quantitative analysis was performed to evaluate the number of ocular medications with a paediatric license in Italy, the UK, and the USA. A literature search was also performed in MEDLINE, EMBASE, and The Cochrane Central Register of Controlled Trials for randomized controlled trials (RCTs) on ophthalmic pharmacological therapy in children aged < 18 years, published up to December 2010. A search in the international clinical trial registries, the list of paediatric investigation plans (PIPs) approved by European Medicines Agency (EMA), and the table of medicines with new paediatric information approved by Food and Drug Administration (FDA) was also performed.</p> <p>Results</p> <p>In all, of 197 drugs identified, 68 (35%) single drugs are licensed for paediatric use at least in one considered country, while 23 (12%) were marketed in all three countries. More specifically, in Italy 43 single drugs (48% of those marketed) had a paediatric license, while 39 (64%) did in the UK and 22 (54%) did in the USA. Only 13 drugs were marketed with a paediatric license in all countries.</p> <p>The percentage of drugs licensed for paediatric use and for which at least one RCT had been performed ranged between 51% in Italy and 55% in the USA. No published RCTs were found for 11 (48%) drugs licensed for paediatric use in all three countries. In all, 74 (35%) of the retrieved RCTs involved mydriatic/cycloplegic medications.</p> <p>A total of 62 RCTs (56% completed) on 46 drugs were found in the international clinical trial registries. Cyclosporin and bevacizumab were being studied in many ongoing trials. Twenty-six drugs had new paediatric information approved by FDA based on new paediatric clinical trials, while only 4 PIPs were approved by EMA.</p> <p>Conclusions</p> <p>There is a pressing need for further research and clinical development in the pediatric ophthalmic area, where effective up-to-date treatments, and additional research and education on use in children, remain priorities.</p

Evaluating hospital websites in Kuwait to improve consumer engagement and access to health information:a cross-sectional analytical study

Abstract Background Current advances in information and communication technology have made accessing and obtaining health-related information easier than ever before. Today, many hospital websites use a patient-centric approach to promote engagement and encourage learning for better health-related decision making. However, little is known about the current state of hospital websites in the State of Kuwait. This study aims to evaluate hospital websites in Kuwait and offer recommendations to improve patient engagement and access to health information. Methods This study employs a cross-sectional analytical approach to evaluate hospital websites in Kuwait in 2017. The websites of hospitals that provide in-patient services were identified through a structured search. Only active websites that were available in either English or Arabic were considered. The evaluation of the websites involved a combination of automated and expert- based evaluation methods and was performed across four dimensions: Accessibility, Usability, Presence, and Content. Results Nine hospitals met the inclusion criteria. Most of the websites fell short in all four dimensions. None of the websites passed the accessibility guidelines. The usability of websites varied between hospitals. Overall, the majority of hospitals in Kuwait have rudimentary online presence and their websites require careful reassessment with respect to design, content, and user experience. The websites focus primarily on promoting services provided by the hospital rather than engaging and communicating with patients or providing evidence-based information. Conclusions Healthcare organization and website developers should follow best-practices to improve their websites taking into consideration the quality, readability, objectivity, coverage and currency of the information as well as the design of their websites. Hospitals should leverage social media to gain outreach and better engagement with consumers. The websites should be offered in additional languages commonly spoken by people living in Kuwait. Efforts should be made to ensure that health information on hospital websites are evidence-based and checked by healthcare professionals

Activity of cortical and thalamic neurons during the slow (<1 Hz) rhythm in the mouse in vivo

During NREM sleep and under certain types of anaesthesia, the mammalian brain exhibits a distinctive slow (<1 Hz) rhythm. At the cellular level, this rhythm correlates with so-called UP and DOWN membrane potential states. In the neocortex, these UP and DOWN states correspond to periods of intense network activity and widespread neuronal silence, respectively, whereas in thalamocortical (TC) neurons, UP/DOWN states take on a more stereotypical oscillatory form, with UP states commencing with a low-threshold Ca2+ potential (LTCP). Whilst these properties are now well recognised for neurons in cats and rats, whether or not they are also shared by neurons in the mouse is not fully known. To address this issue, we obtained intracellular recordings from neocortical and TC neurons during the slow (<1 Hz) rhythm in anaesthetised mice. We show that UP/DOWN states in this species are broadly similar to those observed in cats and rats, with UP states in neocortical neurons being characterised by a combination of action potential output and intense synaptic activity, whereas UP states in TC neurons always commence with an LTCP. In some neocortical and TC neurons, we observed ‘spikelets’ during UP states, supporting the possible presence of electrical coupling. Lastly, we show that, upon tonic depolarisation, UP/DOWN states in TC neurons are replaced by rhythmic high-threshold bursting at ~5 Hz, as predicted by in vitro studies. Thus, UP/DOWN state generation appears to be an elemental and conserved process in mammals that underlies the slow (<1 Hz) rhythm in several species, including humans

Instruments to measure patient experience of healthcare quality in hospitals: a systematic review

Improving and sustaining the quality of hospital care is an international challenge. Patient experience data can be used to target improvement and research. However, the use of patient experience data has been hindered by confusion over multiple instruments (questionnaires) with unknown psychometric testing and utility.MethodsWe conducted a systematic review and utility critique of questionnaires to measure patient experience of healthcare quality in hospitals. Databases (Medical Literature Analysis and Retrieval System (MEDLINE), Cumulative Index to Nursing and Allied Health Literature (CINAHL), Psychological Information (PsychINFO) and Web of Knowledge until end of November 2013) and grey literature were scrutinised. Inclusion criteria were applied to all records with a 10 % sample independently checked. Critique included (1) application of COSMIN checklists to assess the quality of each psychometric study, (2) critique of psychometric results of each study using Terwee et al. criteria and (3) development and critique of additional aspects of utility for each instrument. Two independent reviewers completed each critique. Synthesis included combining findings in a utility matrix.We obtained 1157 records. Of these, 26 papers measuring patient experience of hospital quality of care were identified examining 11 international instruments. We found evidence of extensive theoretical/development work. The quality of methods and results was variable but mostly of a high standard. Additional aspects of utility found that (1) cost efficiency was mostly poor, due to the resource necessary to obtain reliable samples; (2) acceptability of most instruments was good and (3) educational impact was variable, with evidence on the ease of use, for approximately half of the questionnaires.ConclusionsSelecting the right patient experience instrument depends on a balanced consideration of aspects of utility, aided by the matrix. Data required for high stakes purposes requires a high degree of reliability and validity, while those used for quality improvement may tolerate lower levels of reliability in favour of other aspects of utility (educational impact, cost and acceptability)