Being tested but not educated - Patients' perceptions of diabetic dietary advice.

Background Diet is a key component of the management of diabetes. Several studies suggest that patients receive insufficient and inadequate information. As a first step for developing an intervention for improving dietary advice in primary care, we aimed to explore patients’ experience of receiving dietary advice; their attitudes towards that advice; their perceived dietary advice needs, and any barriers faced in adopting a diet that supports the management of their diabetes. Methods A qualitative study with three focus groups (20 purposively sampled participants) was conducted with adult primary care patients with Type 2 diabetes in 2016. A semi-structured topic guide was developed from the literature. The focus groups were audio recorded and transcribed. The data were analysed by emergent themes analysis. Data saturation was achieved in the third focus group. Results The majority of participants were given dietary advice in the form of a generic healthy eating leaflet from a Practice Nurse. Participants had their Haemoglobin A1c (HbA1c) reviewed regularly, but the results seemed not to be linked with review of dietary habits. The test was perceived as being a “pass or fail”, judgmental experience. Participants felt tested but not educated. Conclusion Individuals with type 2 diabetes seem not to receive dietary advice according to their expectations. Information collected as part of the study can be used to inform the development of interventions aimed at improving dietary advice in this population

User-generated online health content: A survey of internet users in the United Kingdom

This is the final version. Available on open access from JMIR Publications via the DOI in this recordThe production of health information has begun to shift from commercial organizations to health care users themselves. People increasingly go online to share their own health and illness experiences and to access information others have posted, but this behavior has not been investigated at a population level in the United Kingdom. Objective: This study aims to explore access and production of user-generated health content among UK Internet users and to investigate relationships between frequency of use and other variables. Methods: We undertook an online survey of 1000 UK Internet users. Descriptive and multivariate statistical analyses were used to interpret the data. Results: Nearly one-quarter of respondents (23.7%, 237/1000) reported accessing and sharing user-generated health content online, whereas more than 20% (22.2%, 222/1000) were unaware that it was possible to do this. Respondents could be divided into 3 groups based on frequency of use: rare users (78.7%, 612/778) who accessed and shared content less than weekly, users (13.9%, 108/778) who did so weekly, and superusers (7.5%, 58/778) who did so on a daily basis. Superusers were more likely to be male (P<.001) and to be employed (P<.001), but there were no differences between the groups with respect to educational level (P=.99) or health status (P=.63). They were more likely to use the Internet for varied purposes such as banking and shopping (P<.001). Conclusions: Although this study found reasonably widespread access of user-generated online health content, only a minority of respondents reported doing so frequently. As this type of content proliferates, superusers are likely to shape the health information that others access. Further research should assess the effect of user-generated online content on health outcomes and use of health services by Internet users. © Martin Duracinsky, Christophe Lalanne, Cécile Goujard, Susan Herrmann, Christian Cheung-Lung, Jean-Paul Brosseau, Yannick Schwartz, Olivier Chassany.Institute for Prospective Technological Studies (IPTS)European Commission’s Joint Research Centre (JRC)European Commission Directorate General for Communications Networks, Content and Technology (DG Connect

Cardboard floor: about the barriers for social progression and their impact on the representativeness of epidemiological studies.

This is the author accepted manuscript. The final version is available from BMJ Publishing via the DOI in this record The most disadvantaged extreme of the social continuum is usually underrepresented in epidemiological studies. We discuss the consequences of excluding this segment of the population and suggest different approaches for addressing this issue. In particular, we describe/analyse a barrier that tends to perpetuates people in the most disadvantaged extreme of the social continuum, hereinafter referred to as the “cardboard floor”. Besides, we propose different approaches to accessing to the least favoured, segment in order to study the cardboard floor. The adoption of these strategies could help to visualize this barrier, allowing to better monitoring social mobility and their expected health improvements, as well as increasing the representativity of population health studies.Medical Research Council (MRC

Adapting QOF to focus on wellbeing and health

This is the final version of the article. Available from BMJ Publishing Group via the DOI in this record

Electronic Quality of Life Assessment using computer-adaptive testing

This is the final version of the article. Available from the publisher via the DOI in this record.BACKGROUND: Quality of life (QoL) questionnaires are desirable for clinical practice but can be time-consuming to administer and interpret, making their widespread adoption difficult. OBJECTIVE: Our aim was to assess the performance of the World Health Organization Quality of Life (WHOQOL)-100 questionnaire as four item banks to facilitate adaptive testing using simulated computer adaptive tests (CATs) for physical, psychological, social, and environmental QoL. METHODS: We used data from the UK WHOQOL-100 questionnaire (N=320) to calibrate item banks using item response theory, which included psychometric assessments of differential item functioning, local dependency, unidimensionality, and reliability. We simulated CATs to assess the number of items administered before prespecified levels of reliability was met. RESULTS: The item banks (40 items) all displayed good model fit (P>.01) and were unidimensional (fewer than 5% of t tests significant), reliable (Person Separation Index>.70), and free from differential item functioning (no significant analysis of variance interaction) or local dependency (residual correlations .90) could be gained with a median of 9 items. CONCLUSIONS: Using CAT, simulated assessments were as reliable as paper-based forms of the WHOQOL with a fraction of the number of items. These properties suggest that these item banks are suitable for computerized adaptive assessment. These item banks have the potential for international development using existing alternative language versions of the WHOQOL items.This work was funded by a National Institute for Health Research Postdoctoral Fellowship grant (NIHR-PDF-2014-07-028) for the lead author, CG

The National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS): a view from the UK.

This is the final version. Available from Dove Medical Press via the DOI in this record.The interest in patient-reported outcome measures (PROMs) continues to increase as recognition of their potential utility rises in an effort to make health systems more patient-centered. The US National Institutes of Health (NIH) Patient-Reported Outcomes Measurement Information System® (PROMIS®) has used state of the art psychometric and statistical techniques to create a universal PROMs language, with potential application across the whole spectrum of health conditions, languages, and geographic locations. PROMIS offers a versatile platform where specific health domains are assessed using both standardized short forms and computerized adaptive tests, which are automatically tailored to individual patients. The scores of each health domain or a standardized profile of multiple domains are all scored on a common metric scale. PROMIS is increasingly recognized as the international gold standard for patient-centered assessment, although the use of these tools in the UK is limited. In this review, the developmental methodology of the PROMIS is described with discussion of its relevant strengths and limitations for use in the UK. We provide a case study of the largest application of the PROMIS tools in the UK as an example of straightforward integration into health-care research. Barriers to the uptake of PROMIS in the UK include the technology requirement, measurement tradition, and lack of a clear understanding of its benefits, and although potential stakeholders should cautiously consider its use, its impressive potential and increasing international utilization should be recognized

Involving patients in patient safety programmes: A scoping review and consensus procedure by the LINNEAUS collaboration on patient safety in primary care

This is the final version of the article. Available from Taylor & Francis via the DOI in this record.BACKGROUND: Patient involvement has only recently received attention as a potentially useful approach to patient safety in primary care. OBJECTIVE: To summarize work conducted on a scoping review of interventions focussing on patient involvement for patient safety; to develop consensus-based recommendations in this area. METHODS: Scoping review of the literature 2006-2011 about methods and effects of involving patients in patient safety in primary care identified evidence for previous experiences of patient involvement in patient safety. This information was fed back to an expert panel for the development of recommendations for healthcare professionals and policy makers. RESULTS: The scoping review identified only weak evidence in support of the effectiveness of patient involvement. Identified barriers included a number of patient factors but also the healthcare workers' attitudes, abilities and lack of training. The expert panel recommended the integration of patient safety in the educational curricula for healthcare professionals, and expected a commitment from professionals to act as first movers by inviting and encouraging the patients to take an active role. The panel proposed a checklist to be used by primary care clinicians at the point of care for promoting patient involvement. CONCLUSION: There is only weak evidence on the effectiveness of patient involvement in patient safety. The recommendations of the panel can inform future policy and practice on patient involvement in safety in primary care.The research leading to these results has received funding from the European Community's Seventh Framework Programme FP7/2008–2012 under grant agreement no. 223424

An overview of self-administered health literacy instruments

This is the final version. Available from Public Library of Science via the DOI in this record.With the increasing recognition of health literacy as a worldwide research priority, the development and refinement of indices to measure the construct is an important area of inquiry. Furthermore, the proliferation of online resources and research means that there is a growing need for self-administered instruments. We undertook a systematic overview to identify all published self-administered health literacy assessment indices to report their content and considerations associated with their administration. A primary aim of this study was to assist those seeking to employ a self-reported health literacy index to select one that has been developed and validated for an appropriate context, as well as with desired administration characteristics. Systematic searches were carried out in four electronic databases, and studies were included if they reported the development and/or validation of a novel health literacy assessment measure. Data were systematically extracted on key characteristics of the instruments: breadth of construct ("generic" vs. "contentor context- specific" health literacy), whether it was an original instrument or a derivative, country of origin, administration characteristics, age of target population (adult vs. pediatric), and evidence for validity. 35 articles met the inclusion criteria. There were 27 original instruments (27/35; 77.1%) and 8 derivative instruments (8/35; 22.9%). 22 indices measured "general" health literacy (22/35; 62.9%) while the remainder measured condition- or context- specific health literacy (13/35; 37.1%). Most health literacy measures were developed in the United States (22/35; 62.9%), and about half had adequate face, content, and construct validity (16/35; 45.7%). Given the number of measures available for many specific conditions and contexts, and that several have acceptable validity, our findings suggest that the research agenda should shift towards the investigation and elaboration of health literacy as a construct itself, in order for research in health literacy measurement to progress.National Institute for Health Research (NIHR

Towards the Composition of Services by End-Users: A Mobile-Based Solution

[EN] Nowadays, we live surrounded by heterogeneous and distributed services that are available to people anytime and anywhere. Even though these services can be used individually, it is through their synchronized and combined usage that end-users are provided with added value. However, existing solutions to service composition are not targeted at ordinary end-users. In fact, these solutions require technical knowledge to deal with the technological heterogeneity in which they are offered to the market. To this end, the paper presents a tool-supported platform that is aided by: (1) EUCalipTool, an end-user mobile tool that implements a Domain Specific Visual Language, which has been specifically designed to compose services on mobile devices; (2) a Faceted Service Registry, which plays the role of gateway between service implementations and end-users, hiding technological issues from the latter when including services in a composition; and (3) a Generation Module, which transforms end-user descriptions into BPMN specification that are interpreted by an execution infrastructure developed for that purpose.This work has been developed with the financial support of the Spanish State Research Agency under the project TIN2017-84094-R and co-financed with ERDF.Valderas, P.; Torres Bosch, MV.; Pelechano Ferragud, V. (2020). Towards the Composition of Services by End-Users: A Mobile-Based Solution. Business & Information Systems Engineering. 62(4):305-321. https://doi.org/10.1007/s12599-019-00617-zS305321624Amir R, Zeid A (2004) A UML profile for service-oriented architectures. In: Companion to the 19th annual ACM SIGPLAN conference on object-oriented programming systems, languages, and applications, Vancouver. ACM, New York, pp 192–193Athreya B, Bahmani F, Diede A, Scaffidi C (2012) End-user programmers on the loose: a study of programming on the phone for the phone. In: IEEE symposium on visual languages and human-centric computing, Innsbruck. IEEE, pp 75–82Atooma (2015) Atooma, a touch of magic. https://www.atooma.com/ . Accessed 1 Oct 2018Ayora C, Torres V, Weber B, Reichert M, Pelechano V (2013) Enhancing modeling and change support for process families through change patterns. In: Nurcan S et al (eds) Enterprise, Business-Process and Information Systems Modeling. BPMDS 2013, EMMSAD 2013, vol 147. Lecture Notes in Business Information Processing. Berlin, Heidelberg, pp 246–260Benedek J, Miner T (2002) Measuring desirability: new methods for evaluating desirability in a usability lab setting. In: Proceedings from the Usability’s Professionals Association (UPA)Broke J (1996) SUS. A “quick and dirty” usability scale. In: Jordan P et al (eds) Usability evaluation in industry. Taylor & Francis, London, pp 189–194Cuccurullo S, Francese R, Risi M, Tortora G (2011) MicroApps development on mobile phones. In: Costabile MF, Dittrich Y, Fischer G, Piccinno A (eds) End-User Development. IS-EUD 2011, vol 6654. Lecture Notes in Computer Science. Berlin, Heidelberg, pp 289–294Danado J, Paternò F (2014) Puzzle: a mobile application development environment using a jigsaw metaphor. J Vis Lang Comput 25(4):297–315Danado J, Davies M, Ricca P, Fensel A (2010) An authoring tool for user generated mobile services. In: Berre AJ, Gómez-Pérez A, Tutschku K, Fensel D (eds) Future internet—FIS 2010. FIS 2010, vol 6369. Lecture Notes in Computer Science. Berlin, Heidelberg, pp 118–127Dey AK, Sohn T, Streng S, Kodama J (2006) iCAP: interactive prototyping of context-aware applications. In: Fishkin KP, Schiele B, Nixon P, Quigley A (eds) Pervasive Computing. Pervasive 2006, vol 3968. Lecture Notes in Computer Science. Berlin, Heidelberg, pp 254–271Engeström Y, Miettinen R, Punamäki RL (1999) Perspectives on activity theory. Cambridge University Press, CambridgeErmagan V, Krüger IH (2007) A UML2 profile for service modeling. In: Engels G, Opdyke B, Schmidt DC, Weil F (eds) Model Driven Engineering Languages and Systems. MODELS 2007, vol 4735. Lecture Notes in Computer Science. Berlin, Heidelberg, pp 360–374Galitz WO (2002) The essential guide to user interface design: an introduction to GUI. Design principles and techniques. Wiley, New YorkGuillen J, Miranda J, Berrocal J, Garcia-Alonso J, Murillo JM, Canal C (2014) People as a service: a mobile-centric model for providing collective sociological profiles. IEEE Softw 31(2):48–53Häkkilä J, Korpipää P, Ronkainen S, Tuomela U (2005) Interaction and end-user programming with a context-aware mobile application. In: Costabile MF, Paternò F (eds) Human-Computer Interaction—INTERACT 2005, Lecture Notes in Computer Science, vol 3585. Berlin, Heidelberg, pp 927–937IFTTT (2015) IFTTT, if this then that. https://IFTTT.com/ . Accessed 1 Oct 2018Klusch M, Sycara K (2001) Brokering and matchmaking for coordination of agent societies: a survey. In: Omicini A, Zambonelli F, Klusch M, Tolksdorf R (eds) Coordination of Internet Agents. Springer, Berlin, Heidelberg, pp 197–224Locale (2015). http://www.twofortyfouram.com . Accessed 1 Oct 2018Lucci G, Paternò F (2014) Understanding end-user development of context-dependent applications in smartphones. In: Sauer S, Bogdan C, Forbrig P, Bernhaupt R, Winckler M (eds) Human-Centered Software Engineering. HCSE 2014, Lecture Notes in Computer Science, vol 8742. Berlin, Heidelberg, pp 182–198Paolucci M, Kawamura T, Payne TR, Sycara K (2002) Semantic matching of web services capabilities. In: Horrocks I, Hendler J (eds) The Semantic Web—ISWC 2002, Lecture Notes in Computer Science, vol 2342. Berlin, Heidelberg, pp 333–347Renger M, Kolfschoten GL, de Vreede GJ (2008) Challenges in collaborative modeling: a literature review. In: Advances in enterprise engineering I, vol 10, Montpellier, pp 61–77Repenning A, Ioannidou A (2006) What makes end-user development tick? 13 design guidelines. In: End user development. Human-computer interaction series, vol 9. Springer, Berlin, pp 51–85Rumbaugh J, Jacobson I, Booch G (2004) The unified modeling language reference manual. Pearson, LondonSegal J (2005) Two principles of end-user software engineering research. ACM SIGSOFT Softw Eng Notes 30(4):1–5Serral E, Valderas P, Pelechano V (2013) Context-adaptive coordination of pervasive services by interpreting models during runtime. Comput J 56(1):87–114Tasker (2015) Tasker, total automation for Android. http://tasker.dinglisch.net/ . Accessed 1 Oct 2018Uden L, Valderas P, Pastor O (2008) An activity-theory-based model to analyse web application requirements. Inf Res 13(2):1Valderas P, Pelechano V, Pastor O (2006) A transformational approach to produce web application prototypes from a web requirements model. Int J Web Eng Technol 3(1):4–42Valderas P, Torres V, Mansanet I, Pelechano V (2017) A mobile-based solution for supporting end-users in the composition of services. Multimed Tools Appl 76(15):16315–16345Workflow.is (2018) Workflow. Spend less taps, get more done. https://workflow.is/ . Accessed 1 Oct 2018Yu J, Sheng QZ, Han J, Wu Y, Liu C (2012) A semantically enhanced service repository for user-centric service discovery and management. Data Knowl Eng 72:202–21