Decision makers\u27 experience of participatory dynamic simulation modelling: Methods for public health policy

Background: Systems science methods such as dynamic simulation modelling are well suited to address questions about public health policy as they consider the complexity, context and dynamic nature of system-wide behaviours. Advances in technology have led to increased accessibility and interest in systems methods to address complex health policy issues. However, the involvement of policy decision makers in health-related simulation model development has been lacking. Where end-users have been included, there has been limited examination of their experience of the participatory modelling process and their views about the utility of the findings. This paper reports the experience of end-user decision makers, including senior public health policy makers and health service providers, who participated in three participatory simulation modelling for health policy case studies (alcohol related harm, childhood obesity prevention, diabetes in pregnancy), and their perceptions of the value and efficacy of this method in an applied health sector context. Methods: Semi-structured interviews were conducted with end-user participants from three participatory simulation modelling case studies in Australian real-world policy settings. Interviewees were employees of government agencies with jurisdiction over policy and program decisions and were purposively selected to include perspectives at different stages of model development. Results: The ‘co-production’ aspect of the participatory approach was highly valued. It was reported as an essential component of building understanding of the modelling process, and thus trust in the model and its outputs as a decision-support tool. The unique benefits of simulation modelling included its capacity to explore interactions of risk factors and combined interventions, and the impact of scaling up interventions. Participants also valued simulating new interventions prior to implementation in the real world, and the comprehensive mapping of evidence and its gaps to prioritise future research. The participatory aspect of simulation modelling was time and resource intensive and therefore most suited to high priority complex topics with contested options for intervening. Conclusion: These findings highlight the value of a participatory approach to dynamic simulation modelling to support its utility in applied health policy settings

Clinical governance, education and learning to manage health information

Purpose – This paper aims to suggest that the concept of clinical governance goes beyond a bureaucratic accountability structure and can be viewed as a negotiated balance between imperfectly aligned and sometimes conflicting goals within a complex adaptive system. On this view, the information system cannot be separated conceptually from the system of governance it supports or the people whose work it facilitates or hinders. Design/methodology/approach – The study, located within the English National Health Service (NHS) between 1999 and 2005, is case study based using a multi method approach to data collection within two primary care organisations (PCOs). The research strategy is conducted within a social constructionist ontological perspective. Findings – The findings reflect the following broad-based themes: mutual adjustment of a plurality of stakeholder perceptions, preferences and priorities; the development of information and communication systems, empowered by informatics; an emphasis on education and training to build capacity and capability. Research limitations/implications – Limitations of case study methodology include a tendency to provide selected accounts. These are potentially biased and risk trivialising findings. Rooted in specific context, their generalisability to other contexts is limited by the extent to which contexts are similar. Reasonable attempts were made to minimise any bias. The diversity of data collection methods used in the study was an attempt to counterbalance the limitations highlighted in one method by strength from alternative techniques. Practical implications – The paper makes recommendations in two key governance areas: education and learning to manage health information. In practice, the lessons learned provide opportunities to inform future approaches to health informatics educational programmes. Originality/value – With regard to topicality, it is suggested that many of the developmental issues highlighted during the establishment of quality improvement programmes within primary care organisations (PCGs/PCTs) are relevant in the light of current NHS reforms and move towards commissioning consortia

Tensions and paradoxes in electronic patient record research: a systematic literature review using the meta-narrative method

Background: The extensive and rapidly expanding research literature on electronic patient records (EPRs) presents challenges to systematic reviewers. This literature is heterogeneous and at times conflicting, not least because it covers multiple research traditions with different underlying philosophical assumptions and methodological approaches. Aim: To map, interpret and critique the range of concepts, theories, methods and empirical findings on EPRs, with a particular emphasis on the implementation and use of EPR systems. Method: Using the meta-narrative method of systematic review, and applying search strategies that took us beyond the Medline-indexed literature, we identified over 500 full-text sources. We used ‘conflicting’ findings to address higher-order questions about how the EPR and its implementation were differently conceptualised and studied by different communities of researchers. Main findings: Our final synthesis included 24 previous systematic reviews and 94 additional primary studies, most of the latter from outside the biomedical literature. A number of tensions were evident, particularly in relation to: [1] the EPR (‘container’ or ‘itinerary’); [2] the EPR user (‘information-processer’ or ‘member of socio-technical network’); [3] organizational context (‘the setting within which the EPR is implemented’ or ‘the EPR-in-use’); [4] clinical work (‘decision-making’ or ‘situated practice’); [5] the process of change (‘the logic of determinism’ or ‘the logic of opposition’); [6] implementation success (‘objectively defined’ or ‘socially negotiated’); and [7] complexity and scale (‘the bigger the better’ or ‘small is beautiful’). Findings suggest that integration of EPRs will always require human work to re-contextualize knowledge for different uses; that whilst secondary work (audit, research, billing) may be made more efficient by the EPR, primary clinical work may be made less efficient; that paper, far from being technologically obsolete, currently offers greater ecological flexibility than most forms of electronic record; and that smaller systems may sometimes be more efficient and effective than larger ones. Conclusions: The tensions and paradoxes revealed in this study extend and challenge previous reviews and suggest that the evidence base for some EPR programs is more limited than is often assumed. We offer this paper as a preliminary contribution to a much-needed debate on this evidence and its implications, and suggest avenues for new research

A study of general practitioners' perspectives on electronic medical records systems in NHS Scotland

<b>Background</b> Primary care doctors in NHSScotland have been using electronic medical records within their practices routinely for many years. The Scottish Health Executive eHealth strategy (2008-2011) has recently brought radical changes to the primary care computing landscape in Scotland: an information system (GPASS) which was provided free-of-charge by NHSScotland to a majority of GP practices has now been replaced by systems provided by two approved commercial providers. The transition to new electronic medical records had to be completed nationally across all health-boards by March 2012. <p></p><b> Methods</b> We carried out 25 in-depth semi-structured interviews with primary care doctors to elucidate GPs' perspectives on their practice information systems and collect more general information on management processes in the patient surgical pathway in NHSScotland. We undertook a thematic analysis of interviewees' responses, using Normalisation Process Theory as the underpinning conceptual framework. <p></p> <b>Results</b> The majority of GPs' interviewed considered that electronic medical records are an integral and essential element of their work during the consultation, playing a key role in facilitating integrated and continuity of care for patients and making clinical information more accessible. However, GPs expressed a number of reservations about various system functionalities - for example: in relation to usability, system navigation and information visualisation. <b>Conclusion </b>Our study highlights that while electronic information systems are perceived as having important benefits, there remains substantial scope to improve GPs' interaction and overall satisfaction with these systems. Iterative user-centred improvements combined with additional training in the use of technology would promote an increased understanding, familiarity and command of the range of functionalities of electronic medical records among primary care doctors

Wüsteria

The last two decades have seen considerable efforts directed towards making Electronic Health Records interoperable through improvements in medical ontologies, terminologies and coding systems. Unfortunately, these efforts have been hampered by a number of influential ideas inherited from the work of Eugen Wüster, the father of terminology standardization and the founder of ISO TC 37. We here survey Wüster’s ideas – which see terminology work as being focused on the classification of concepts in people’s minds – and we argue that they serve still as the basis for a series of influential confusions. We argue further that an ontology based unambiguously, not on concepts, but on the classification of entities in reality can, by removing these confusions, make a vital contribution to ensuring the interoperability of coding systems and healthcare records in the future

How was it for you? Experiences of participatory design in the UK health service

Improving co-design methods implies that we need to understand those methods, paying attention to not only the effect of method choices on design outcomes, but also how methods affect the people involved in co-design. In this article, we explore participants' experiences from a year-long participatory health service design project to develop ‘Better Outpatient Services for Older People’. The project followed a defined method called experience-based design (EBD), which represented the state of the art in participatory service design within the UK National Health Service. A sample of participants in the project took part in semi-structured interviews reflecting on their involvement in and their feelings about the project. Our findings suggest that the EBD method that we employed was successful in establishing positive working relationships among the different groups of stakeholders (staff, patients, carers, advocates and design researchers), although conflicts remained throughout the project. Participants' experiences highlighted issues of wider relevance in such participatory design: cost versus benefit, sense of project momentum, locus of control, and assumptions about how change takes place in a complex environment. We propose tactics for dealing with these issues that inform the future development of techniques in user-centred healthcare design

Ontology as the core discipline of biomedical informatics: Legacies of the past and recommendations for the future direction of research

The automatic integration of rapidly expanding information resources in the life sciences is one of the most challenging goals facing biomedical research today. Controlled vocabularies, terminologies, and coding systems play an important role in realizing this goal, by making it possible to draw together information from heterogeneous sources – for example pertaining to genes and proteins, drugs and diseases – secure in the knowledge that the same terms will also represent the same entities on all occasions of use. In the naming of genes, proteins, and other molecular structures, considerable efforts are under way to reduce the effects of the different naming conventions which have been spawned by different groups of researchers. Electronic patient records, too, increasingly involve the use of standardized terminologies, and tremendous efforts are currently being devoted to the creation of terminology resources that can meet the needs of a future era of personalized medicine, in which genomic and clinical data can be aligned in such a way that the corresponding information systems become interoperable

Giving patients granular control of personal health information: Using an ethics ‘Points to Consider’ to inform informatics system designers

Objective: There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this. Methods: We reviewed existing literature on the ethical and policy issues, developed an ethics framework called a “Points to Consider” (P2C) document, and convened a national expert panel to review and critique the P2C. Results: We developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions (“Points”) that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care. Discussion: The P2C is intended to clarify whatis at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion

How Bioethics Principles Can Aid Design of Electronic Health Records to Accommodate Patient Granular Control

Ethics should guide the design of electronic health records (EHR), and recognized principles of bioethics can play an important role. This approach was adopted recently by a team of informaticists designing and testing a system where patients exert granular control over who views their personal health information. While this method of building ethics in from the start of the design process has significant benefits, questions remain about how useful the application of bioethics principles can be in this process, especially when principles conflict. For instance, while the ethical principle of respect for autonomy supports a robust system of granular control, the principles of beneficence and non-maleficence counsel restraint due to the danger of patients being harmed by restrictions on provider access to data. Conflict between principles has long been recognized by ethicists and has even motivated attacks on approaches that state and apply principles. In this paper we show how using ethical principles can help in the design of EHRs by first, explaining how ethical principles can and should be used generally, and then by, discuss how attention to details in specific cases can show that the tension between principles is not as bad as it initially appeared. We conclude by suggesting further ways in which the application of these (and other) principles can add value to the ongoing discussion of patient involvement in their health care. This is a new approach to linking principles to informatics design that we expect will stimulate further interest

User interface design for mobile-based sexual health interventions for young people: Design recommendations from a qualitative study on an online Chlamydia clinical care pathway

Background: The increasing pervasiveness of mobile technologies has given potential to transform healthcare by facilitating clinical management using software applications. These technologies may provide valuable tools in sexual health care and potentially overcome existing practical and cultural barriers to routine testing for sexually transmitted infections. In order to inform the design of a mobile health application for STIs that supports self-testing and self-management by linking diagnosis with online care pathways, we aimed to identify the dimensions and range of preferences for user interface design features among young people. Methods: Nine focus group discussions were conducted (n=49) with two age-stratified samples (16 to 18 and 19 to 24 year olds) of young people from Further Education colleges and Higher Education establishments. Discussions explored young people's views with regard to: the software interface; the presentation of information; and the ordering of interaction steps. Discussions were audio recorded and transcribed verbatim. Interview transcripts were analysed using thematic analysis. Results: Four over-arching themes emerged: privacy and security; credibility; user journey support; and the task-technology-context fit. From these themes, 20 user interface design recommendations for mobile health applications are proposed. For participants, although privacy was a major concern, security was not perceived as a major potential barrier as participants were generally unaware of potential security threats and inherently trusted new technology. Customisation also emerged as a key design preference to increase attractiveness and acceptability. Conclusions: Considerable effort should be focused on designing healthcare applications from the patient's perspective to maximise acceptability. The design recommendations proposed in this paper provide a valuable point of reference for the health design community to inform development of mobile-based health interventions for the diagnosis and treatment of a number of other conditions for this target group, while stimulating conversation across multidisciplinary communities