Inocencio Maramba

The feasibility of collecting information from people with Multiple Sclerosis for the UK MS Register via a web portal: characterising a cohort of people with MS

BackgroundA UK Register of people with Multiple Sclerosis has been developed to address the need for an increased knowledge-base about MS. The Register is being populated via: a web-based portal; NHS neurology clinical systems; and administrative data sources. The data are de-identified and linked at the individual level. At the outset, it was not known whether people with MS would wish to participate in the UK MS Register by personally contributing their data to the Register via a web-based system. Therefore, the research aim of this work was to build an internet-mounted recruitment and consenting technology for people with Multiple Sclerosis, and to assess its feasibility as a questionnaire delivery platform to contribute data to the UK MS Register, by determining whether the information provided could be used to describe a cohort of people with MS.MethodsThe web portal was developed using VB.net and JQuery with a Microsoft SQL 2008 database. UK adults with MS can self-register and enter data about themselves by completing validated questionnaires. Descriptive statistics were used to characterise the respondents.ResultsThe web portal was launched in May 2011, and in first three months 7,279 individuals registered on the portal. The ratio of men to women was 1:2.4 (n = 5,899), the mean self-reported age at first symptoms was 33.8 (SD 10.5) years, and at diagnosis 39.6 (SD 10.3) years (n = 4,401). The reported types of MS were: 15% primary progressive, 63% relapsing-remitting, 8% secondary progressive, and 14% unknown (n = 5,400). These characteristics are similar to those of the prevalent MS population. Employment rates, sickness/disability rates, ethnicity and educational qualifications were compared with the general UK population. Information about the respondents’ experience of early symptoms and the process of diagnosis, plus living arrangements are also reported.ConclusionsThese initial findings from the MS Register portal demonstrate the feasibility of collecting data about people with MS via a web platform, and show that sufficient information can be gathered to characterise a cohort of people with MS. The innovative design of the UK MS register, bringing together three disparate sources of data, is creating a rich resource for research into this condition.

Understanding high and low patient experience scores in primary care: analysis of patients' survey data for general practices and individual doctors.

Objectives To determine the extent to which practice level scores mask variation in individual performance between doctors within a practice. Design Analysis of postal survey of patients’ experience of face-to-face consultations with individual general practitioners in a stratified quota sample of primary care practices. Setting Twenty five English general practices, selected to include a range of practice scores on doctor-patient communication items in the English national GP Patient Survey. Participants 7721 of 15 172 patients (response rate 50.9%) who consulted with 105 general practitioners in 25 practices between October 2011 and June 2013. Main outcome measure Score on doctor-patient communication items from post-consultation surveys of patients for each participating general practitioner. The amount of variance in each of six outcomes that was attributable to the practices, to the doctors, and to the patients and other residual sources of variation was calculated using hierarchical linear models. Results After control for differences in patients’ age, sex, ethnicity, and health status, the proportion of variance in communication scores that was due to differences between doctors (6.4%) was considerably more than that due to practices (1.8%). The findings also suggest that higher performing practices usually contain only higher performing doctors. However, lower performing practices may contain doctors with a wide range of communication scores. Conclusions Aggregating patients’ ratings of doctors’ communication skills at practice level can mask considerable variation in the performance of individual doctors, particularly in lower performing practices. Practice level surveys may be better used to “screen” for concerns about performance that require an individual level survey. Higher scoring practices are unlikely to include lower scoring doctors. However, lower scoring practices require further investigation at the level of the individual doctor to distinguish higher and lower scoring general practitioners.

Use of Live Interactive Webcasting for an International Postgraduate Module in eHealth: Case Study Evaluation

Background Producing “traditional” e-learning can be time consuming, and in a topic such as eHealth, it may have a short shelf-life. Students sometimes report feeling isolated and lacking in motivation. Synchronous methods can play an important part in any blended approach to learning. Objective The aim was to develop, deliver, and evaluate an international postgraduate module in eHealth using live interactive webcasting. Methods We developed a hybrid solution for live interactive webcasting using a scan converter, mixer, and digitizer, and video server to embed a presenter-controlled talking head or copy of the presenter’s computer screen (normally a PowerPoint slide) in a student chat room. We recruited 16 students from six countries and ran weekly 2.5-hour live sessions for 10 weeks. The content included the use of computers by patients, patient access to records, different forms of e-learning for patients and professionals, research methods in eHealth, geographic information systems, and telehealth. All sessions were recorded—presentations as video files and the student interaction as text files. Students were sent an email questionnaire of mostly open questions seeking their views of this form of learning. Responses were collated and anonymized by a colleague who was not part of the teaching team. Results Sessions were generally very interactive, with most students participating actively in breakout or full-class discussions. In a typical 2.5-hour session, students posted about 50 messages each. Two students did not complete all sessions; one withdrew from the pressure of work after session 6, and one from illness after session 7. Fourteen of the 16 responded to the feedback questionnaire. Most students (12/14) found the module useful or very useful, and all would recommend the module to others. All liked the method of delivery, in particular the interactivity, the variety of students, and the “closeness” of the group. Most (11/14) felt “connected” with the other students on the course. Many students (11/14) had previous experience with asynchronous e-learning, two as teachers; 12/14 students suggested advantages of synchronous methods, mostly associated with the interaction and feedback from teachers and peers. Conclusions This model of synchronous e-learning based on interactive live webcasting was a successful method of delivering an international postgraduate module. Students found it engaging over a 10-week course. Although this is a small study, given that synchronous methods such as interactive webcasting are a much easier transition for lecturers used to face-to-face teaching than are asynchronous methods, they should be considered as part of the blend of e-learning methods. Further research and development is needed on interfaces and methods that are robust and accessible, on the most appropriate blend of synchronous and asynchronous work for different student groups, and on learning outcomes and effectiveness.

Undergraduate Nurses' and Midwives' Participation and Satisfaction with Live Interactive Webcasts

Introduction: E-Learning methods such as webcasting are being used increasingly in healthcare education, including that of nurses and midwives. Webcasting means live synchronous broadcasting over the internet, where students participate simultaneously in text ‘chat room’ interactive discussions when logged on to a webpage where they can see and hear a presentation such as a PowerPoint lecture, a list of other participants, and access ‘chat rooms’. Aims: This paper reports student participation and satisfaction with the use of webcasting in a third year undergraduate nursing and midwifery research methods module in one higher education institution faculty of health and social work in the southwest of England, with students from distributed geographical locations. Materials and Methods: Students chose either webcasts or face-to-face lectures. Following each of the four webcasts, a web-based evaluation questionnaire was administered in a cross-sectional survey design. Results: Two thirds of students took part in webcasts and found them to be an acceptable teaching and learning strategy. Travel and cost savings were noted through not travelling to the main university campus, and these were statistically significantly correlated with students’ perception of gaining from the module and their overall satisfaction with webcasting. Across the four webcasts 5446 purposeful messages were posted indicating engagement with the material under study. Conclusions and Recommendations: Webcasting is an effective teaching and learning strategy which is popular with students, allows remote access to teaching and learning, and offers time and cost savings to students. Further research is required to investigate the educational potential of this new technology.

Web-Based Textual Analysis of Free-Text Patient Experience Comments From a Survey in Primary Care

Background Open-ended questions eliciting free-text comments have been widely adopted in surveys of patient experience. Analysis of free text comments can provide deeper or new insight, identify areas for action, and initiate further investigation. Also, they may be a promising way to progress from documentation of patient experience to achieving quality improvement. The usual methods of analyzing free-text comments are known to be time and resource intensive. To efficiently deal with a large amount of free-text, new methods of rapidly summarizing and characterizing the text are being explored. Objective The aim of this study was to investigate the feasibility of using freely available Web-based text processing tools (text clouds, distinctive word extraction, key words in context) for extracting useful information from large amounts of free-text commentary about patient experience, as an alternative to more resource intensive analytic methods. Methods We collected free-text responses to a broad, open-ended question on patients’ experience of primary care in a cross-sectional postal survey of patients recently consulting doctors in 25 English general practices. We encoded the responses to text files which were then uploaded to three Web-based textual processing tools. The tools we used were two text cloud creators: TagCrowd for unigrams, and Many Eyes for bigrams; and Voyant Tools, a Web-based reading tool that can extract distinctive words and perform Keyword in Context (KWIC) analysis. The association of patients’ experience scores with the occurrence of certain words was tested with logistic regression analysis. KWIC analysis was also performed to gain insight into the use of a significant word. Results In total, 3426 free-text responses were received from 7721 patients (comment rate: 44.4%). The five most frequent words in the patients’ comments were “doctor”, “appointment”, “surgery”, “practice”, and “time”. The three most frequent two-word combinations were “reception staff”, “excellent service”, and “two weeks”. The regression analysis showed that the occurrence of the word “excellent” in the comments was significantly associated with a better patient experience (OR=1.96, 95%CI=1.63-2.34), while “rude” was significantly associated with a worse experience (OR=0.53, 95%CI=0.46-0.60). The KWIC results revealed that 49 of the 78 (63%) occurrences of the word “rude” in the comments were related to receptionists and 17(22%) were related to doctors. Conclusions Web-based text processing tools can extract useful information from free-text comments and the output may serve as a springboard for further investigation. Text clouds, distinctive words extraction and KWIC analysis show promise in quick evaluation of unstructured patient feedback. The results are easily understandable, but may require further probing such as KWIC analysis to establish the context. Future research should explore whether more sophisticated methods of textual analysis (eg, sentiment analysis, natural language processing) could add additional levels of understanding.

Outcome measures for multiple sclerosis

Abstract Background: This review determined the most commonly used, and reliable, measures for assessing clinical outcomes for multiple sclerosis (MS). Objectives: It was anticipated that this would facilitate the development of a common set of metrics, and aid reaching a consensus regarding the outcome measures that are typically used in the field of MS clinical research. Major findings: A thorough literature review of clinical outcome measures for MS produced 166 measures that have been used in this context. This list was then refined by discussion with a panel of consultant neurologists, which reduced the list to 23 commonly employed tools. This shortlist was then further refined through surveying 41 centres for MS treatment, which reduced the shortlist to 16 measures. The properties of these scales, in terms of their symptom/function domains, their specificity for MS, their administration characteristics, and their reliability and validity for MS, are all discussed. Conclusions: Conclusions regarding the development of potential sets of assessment measures for MS, which encompass broad symptom/function domains, and which are sensitive to the practical requirements of administration within clinical contexts, are explored.

Patient Preferences for Online Person-Person Support

The Internet not only provides health information through ‘Web pages’ such as BUPA and Cancerbackup, but also offers person-person support through social networks, message boards, chat rooms, and virtual worlds. The wealth of Internet person-person support methods may benefit patients, but may be confusing. For example, some online methods offer more anonymity, some are synchronous (i.e. communication in real time), while yet others are asynchronous. Some rely on professional input, while others offer only peer-peer communication. Preference for a particular support method may vary by patient characteristics such as condition (e.g. people with depression may prefer anonymity, pregnant women may be less concerned about it), age (e.g. older people may prefer asynchronous methods that give more time to think), or stage of disease (e.g. people just diagnosed may seek professional support but longer term may prefer peer support).

Identifying and Addressing the Barriers to the Use of an Internet-Register for Multiple Sclerosis

Given the potential of health internet-registers, this study examined how such registers can be made more effective and efficient. This involved investigating the actual barriers to usage experienced by those for whom such registers are established to help. To elicit responses regarding the opinions, views, and experiences of participants, concerning their various reasons for non-progression or non-completion of the pilot UK MS Register, a list of ten potential key areas of difficulty, in the form of short statements, was e-mailed to participants. A content analysis revealed that there were four main areas of concern that could represent potential barriers for health internet-registers, in general, and that need to be considered when establishing, designing, and developing such registers: technical aspects of using the internet; computer literacy and ability, encompassing website design, clarity, and user-friendliness; symptom mismatches with register content; and condition-specific effects and impacts as barriers to internet-register use.

Rating Communication in GP Consultations: The Association Between Ratings Made by Patients and Trained Clinical Raters

Patient evaluations of physician communication are widely used, but we know little about how these relate to professionally agreed norms of communication quality. We report an investigation into the association between patient assessments of communication quality and an observer-rated measure of communication competence. Consent was obtained to video record consultations with Family Practitioners in England, following which patients rated the physician’s communication skills. A sample of consultation videos was subsequently evaluated by trained clinical raters using an instrument derived from the Calgary-Cambridge guide to the medical interview. Consultations scored highly for communication by clinical raters were also scored highly by patients. However, when clinical raters judged communication to be of lower quality, patient scores ranged from “poor” to “very good.” Some patients may be inhibited from rating poor communication negatively. Patient evaluations can be useful for measuring relative performance of physicians’ communication skills, but absolute scores should be interpreted with caution.

Thematic Network DIETS mapping dietetic education in Europe 2006-2009: comparisons to the European Academic and Practitioner Standards for Dietetics

Abstract Background In 2002 a study by the European Federation of Associations for Dietitians revealed that the education of dietitians prior to entry into the profession was quite diverse across Europe. An EU supported Thematic Network ‘Dietitians Improving Education and Training Standards’ (DIETS) had, as one of its objectives to study and then support change in dietetic education through its partners in 30 countries in Europe over the period 2006-09. This study compared educational practices in Higher Education Institutes that teach dietetics between 2007 and 2009. Methods The study was longitudinal repeated measure in design. An online questionnaire was developed to record the current academic curricular and structure of the practice placements as well as programme recognition in the country concerned. The study also asked about ECTS calibration and use of certain reference materials in the design of the curriculum for example the European Academic and Practitioner Standards for Dietetics. The questionnaire was sent to all Higher Education Institutes that were partners of the DIETS Network in 2007 and 2009. Results Responses yielded an analysable sample of 35 in 2007 and 41 questionnaires in 2009 representing a response rate of about 60% of HEIs in partnership with DIETS. Changes in calibration status was observed in 37 (90%) of HEIs compared to 21 (60%) over the two years. Four countries acquired national standards for the recognition of dietitians and their education. Dietetic placement length still falls short of the recommendation in seven countries but the diversity of placements offered to students is to be valued. Two subjects, public health/promotion and reflective learning (research) are now being taught in more HEIs over the two year period but immunology, genetics, management and leadership and marketing are taught in less than 60% of HEIs in both 2007 and 2009. Conclusions There have been positive changes demonstrated in dietetic education in Europe between 2007 and 2009. The work of the Thematic Network can be seen in promoting the importance of ECTS calibration, educational standards, placement preparation and teaching and the breadth of the curriculum. National authorities, higher education and professional associations will continue to improve the preparation of dietitians so they can contribute fully to improve the future nutritional health of Europe.