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We lead multidisciplinary applied research and training to rethink the way health care is delivered in general practice and across the community.
Privacy dictionary: A linguistic taxonomy of privacy for content analysis
Privacy is frequently a key concern relating to technology and central to HCI research, yet it is notoriously difficult to study in a naturalistic way. In this paper we describe and evaluate a dictionary of privacy designed for content analysis, derived using prototype theory and informed by traditional theoretical approaches to privacy. We evaluate our dictionary categories alongside privacy-related categories from an existing content analysis tool, LIWC, using verbal discussions of privacy issues from a variety of technology and non-technology contexts. We find that our privacy dictionary is better able to distinguish between privacy and non-privacy language, and is less context-dependent than LIWC. However, the more general LIWC categories are able to describe a greater amount of variation in our data. We discuss possible improvements to the privacy dictionary and note future work. Copyright 2011 ACM.
Beyond Adoption: A New Framework for Theorizing and Evaluating Nonadoption, Abandonment, and Challenges to the Scale-Up, Spread, and Sustainability of Health and Care Technologies
METHODS: The study had 2 parallel components: (1) secondary research (hermeneutic systematic review) to identify key domains, and (2) empirical case studies of technology implementation to explore, test, and refine these domains. We studied 6 technology-supported programs-video outpatient consultations, global positioning system tracking for cognitive impairment, pendant alarm services, remote biomarker monitoring for heart failure, care organizing software, and integrated case management via data sharing-using longitudinal ethnography and action research for up to 3 years across more than 20 organizations. Data were collected at micro level (individual technology users), meso level (organizational processes and systems), and macro level (national policy and wider context). Analysis and synthesis was aided by sociotechnically informed theories of individual, organizational, and system change. The draft framework was shared with colleagues who were introducing or evaluating other technology-supported health or care programs and refined in response to feedback.
Beyond Adoption: A New Framework for Theorizing and Evaluating Nonadoption, Abandonment, and Challenges to the Scale-Up, Spread, and Sustainability of Health and Care Technologies (Preprint)
BACKGROUND Many promising technological innovations in health and social care are characterized by nonadoption or abandonment by individuals or by failed attempts to scale up locally, spread distantly, or sustain the innovation long term at the organization or system level. OBJECTIVE Our objective was to produce an evidence-based, theory-informed, and pragmatic framework to help predict and evaluate the success of a technology-supported health or social care program. METHODS The study had 2 parallel components: (1) secondary research (hermeneutic systematic review) to identify key domains, and (2) empirical case studies of technology implementation to explore, test, and refine these domains. We studied 6 technology-supported programs—video outpatient consultations, global positioning system tracking for cognitive impairment, pendant alarm services, remote biomarker monitoring for heart failure, care organizing software, and integrated case management via data sharing—using longitudinal ethnography and action research for up to 3 years across more than 20 organizations. Data were collected at micro level (individual technology users), meso level (organizational processes and systems), and macro level (national policy and wider context). Analysis and synthesis was aided by sociotechnically informed theories of individual, organizational, and system change. The draft framework was shared with colleagues who were introducing or evaluating other technology-supported health or care programs and refined in response to feedback. RESULTS The literature review identified 28 previous technology implementation frameworks, of which 14 had taken a dynamic systems approach (including 2 integrative reviews of previous work). Our empirical dataset consisted of over 400 hours of ethnographic observation, 165 semistructured interviews, and 200 documents. The final nonadoption, abandonment, scale-up, spread, and sustainability (NASSS) framework included questions in 7 domains: the condition or illness, the technology, the value proposition, the adopter system (comprising professional staff, patient, and lay caregivers), the organization(s), the wider (institutional and societal) context, and the interaction and mutual adaptation between all these domains over time. Our empirical case studies raised a variety of challenges across all 7 domains, each classified as simple (straightforward, predictable, few components), complicated (multiple interacting components or issues), or complex (dynamic, unpredictable, not easily disaggregated into constituent components). Programs characterized by complicatedness proved difficult but not impossible to implement. Those characterized by complexity in multiple NASSS domains rarely, if ever, became mainstreamed. The framework showed promise when applied (both prospectively and retrospectively) to other programs. CONCLUSIONS Subject to further empirical testing, NASSS could be applied across a range of technological innovations in health and social care. It has several potential uses: (1) to inform the design of a new technology; (2) to identify technological solutions that (perhaps despite policy or industry enthusiasm) have a limited chance of achieving large-scale, sustained adoption; (3) to plan the implementation, scale-up, or rollout of a technology program; and (4) to explain and learn from program failures.
Infrastructure revisited: An ethnographic case study of how health information infrastructure shapes and constrains technological innovation
Background: Star defined infrastructure as something other things "run on"; it consists mainly of "boring things." Building on her classic 1999 paper, and acknowledging contemporary developments in technologies, services, and systems, we developed a new theorization of health information infrastructure with five defining characteristics: (1) a material scaffolding, backgrounded when working and foregrounded upon breakdown; (2) embedded, relational, and emergent; (3) collectively learned, known, and practiced (through technologically-supported cooperative work and organizational routines); (4) patchworked (incrementally built and fixed) and path-dependent (influenced by technical and socio-cultural legacies); and (5) institutionally supported and sustained (eg, embodying standards negotiated and overseen by regulatory and professional bodies). Objective: Our theoretical objective was, in a health care context, to explore what information infrastructure is and how it shapes, supports, and constrains technological innovation. Our empirical objective was to examine the challenges of implementing and scaling up video consultation services. Methods: In this naturalistic case study, we collected a total of 450 hours of ethnographic observations, over 100 interviews, and about 100 local and national documents over 54 months. Sensitized by the characteristics of infrastructure, we sought examples of infrastructural challenges that had slowed implementation and scale-up. We arranged data thematically to gain familiarity before undertaking an analysis informed by strong structuration, neo-institutional, and social practice theories, together with elements taken from the actor-network theory. Results: We documented scale-up challenges at three different sites in our original case study, all of which relate to "boring things": the selection of a platform to support video-mediated consultations, the replacement of desktop computers with virtual desktop infrastructure profiles, and problems with call quality. In a fourth subcase, configuration issues with licensed video-conferencing software limited the spread of the innovation to another UK site. In all four subcases, several features of infrastructure were evident, including: (1) intricacy and lack of dependability of the installed base; (2) interdependencies of technologies, processes, and routines, such that a fix for one problem generated problems elsewhere in the system; (3) the inertia of established routines; (4) the constraining (and, occasionally, enabling) effect of legacy systems; and (5) delays and conflicts relating to clinical quality and safety standards. Conclusions: Innovators and change agents who wish to introduce new technologies in health services and systems should: (1) attend to materiality (eg, expect bugs and breakdowns, and prioritize basic dependability over advanced functionality); (2) take a systemic and relational view of technologies (versus as an isolated tool or function); (3) remember that technology-supported work is cooperative and embedded in organizational routines, which are further embedded in other routines; (4) innovate incrementally, taking account of technological and socio-cultural legacies; (5) consider standards but also where these standards come from and what priorities and interests they represent; and (6) seek to create leeway for these standards to be adapted to different local conditions.
Infrastructure Revisited: An Ethnographic Case Study of how Health Information Infrastructure Shapes and Constrains Technological Innovation (Preprint)
BACKGROUND Star defined infrastructure as something other things “run on”; it consists mainly of “boring things.” Building on her classic 1999 paper, and acknowledging contemporary developments in technologies, services, and systems, we developed a new theorization of health information infrastructure with five defining characteristics: (1) a material scaffolding, backgrounded when working and foregrounded upon breakdown; (2) embedded, relational, and emergent; (3) collectively learned, known, and practiced (through technologically-supported cooperative work and organizational routines); (4) patchworked (incrementally built and fixed) and path-dependent (influenced by technical and socio-cultural legacies); and (5) institutionally supported and sustained (eg, embodying standards negotiated and overseen by regulatory and professional bodies). OBJECTIVE Our theoretical objective was, in a health care context, to explore what information infrastructure is and how it shapes, supports, and constrains technological innovation. Our empirical objective was to examine the challenges of implementing and scaling up video consultation services. METHODS In this naturalistic case study, we collected a total of 450 hours of ethnographic observations, over 100 interviews, and about 100 local and national documents over 54 months. Sensitized by the characteristics of infrastructure, we sought examples of infrastructural challenges that had slowed implementation and scale-up. We arranged data thematically to gain familiarity before undertaking an analysis informed by strong structuration, neo-institutional, and social practice theories, together with elements taken from the actor-network theory. RESULTS We documented scale-up challenges at three different sites in our original case study, all of which relate to “boring things”: the selection of a platform to support video-mediated consultations, the replacement of desktop computers with virtual desktop infrastructure profiles, and problems with call quality. In a fourth subcase, configuration issues with licensed video-conferencing software limited the spread of the innovation to another UK site. In all four subcases, several features of infrastructure were evident, including: (1) intricacy and lack of dependability of the installed base; (2) interdependencies of technologies, processes, and routines, such that a fix for one problem generated problems elsewhere in the system; (3) the inertia of established routines; (4) the constraining (and, occasionally, enabling) effect of legacy systems; and (5) delays and conflicts relating to clinical quality and safety standards. CONCLUSIONS Innovators and change agents who wish to introduce new technologies in health services and systems should: (1) attend to materiality (eg, expect bugs and breakdowns, and prioritize basic dependability over advanced functionality); (2) take a systemic and relational view of technologies (versus as an isolated tool or function); (3) remember that technology-supported work is cooperative and embedded in organizational routines, which are further embedded in other routines; (4) innovate incrementally, taking account of technological and socio-cultural legacies; (5) consider standards but also where these standards come from and what priorities and interests they represent; and (6) seek to create leeway for these standards to be adapted to different local conditions.
Analysing the role of complexity in explaining the fortunes of technology programmes: Empirical application of the NASSS framework
Background: Failures and partial successes are common in technology-supported innovation programmes in health and social care. Complexity theory can help explain why. Phenomena may be simple (straightforward, predictable, few components), complicated (multiple interacting components or issues) or complex (dynamic, unpredictable, not easily disaggregated into constituent components). The recently published NASSS framework applies this taxonomy to explain Non-adoption or Abandonment of technology by individuals and difficulties achieving Scale-up, Spread and Sustainability. This paper reports the first empirical application of the NASSS framework. Methods: Six technology-supported programmes were studied using ethnography and action research for up to 3 years across 20 health and care organisations and 10 national-level bodies. They comprised video outpatient consultations, GPS tracking technology for cognitive impairment, pendant alarm services, remote biomarker monitoring for heart failure, care organising software and integrated case management via data warehousing. Data were collected at three levels: micro (individual technology users), meso (organisational processes and systems) and macro (national policy and wider context). Data analysis and synthesis were guided by socio-technical theories and organised around the seven NASSS domains: (1) the condition or illness, (2) the technology, (3) the value proposition, (4) the adopter system (professional staff, patients and lay carers), (5) the organisation(s), (6) the wider (institutional and societal) system and (7) interaction and mutual adaptation among all these domains over time. Results: The study generated more than 400 h of ethnographic observation, 165 semi-structured interviews and 200 documents. The six case studies raised multiple challenges across all seven domains. Complexity was a common feature of all programmes. In particular, individuals' health and care needs were often complex and hence unpredictable and 'off algorithm'. Programmes in which multiple domains were complicated proved difficult, slow and expensive to implement. Those in which multiple domains were complex did not become mainstreamed (or, if mainstreamed, did not deliver key intended outputs). Conclusion: The NASSS framework helped explain the successes, failures and changing fortunes of this diverse sample of technology-supported programmes. Since failure is often linked to complexity across multiple NASSS domains, further research should systematically address ways to reduce complexity and/or manage programme implementation to take account of it.
Promises and perils of group clinics for young people living with diabetes: A realist review
Group clinics are becoming popular as a new care model in diabetes care. This evidence synthesis, using realist review methodology, examined the role of group clinics in meeting the complex needs of young people living with diabetes. Following Realist And Meta-narrative Evidence Synthesis–Evolving Standards (RAMESES) quality standards, we conducted a systematic search across 10 databases. A total of 131 articles met inclusion criteria and were analyzed to develop theoretically informed explanations of how and why group clinics could work (or not) for young people with diabetes. Models of group-based care in the literature varied significantly and incorporated different degrees of clinical and educational content. Our analysis identified four overarching principles that can be applied in different contexts to drive sustained engagement of young people in group clinics: 1) emphasizing self-management as practical knowledge; 2) developing a sense of affinity between patients; 3) providing safe, developmentally appropriate care; and 4) balancing group and individual needs. Implementation of group clinics was not always straightforward; numerous adjustments to operational and clinical processes were required to establish and deliver high-quality care. Group clinics for young people with diabetes offer the potential to complement individualized care but are not a panacea and may generate as well as solve problems.
Studying complexity in health services research: Desperately seeking an overdue paradigm shift
Complexity is much talked about but sub-optimally studied in health services research. Although the significance of the complex system as an analytic lens is increasingly recognised, many researchers are still using methods that assume a closed system in which predictive studies in general, and controlled experiments in particular, are possible and preferred. We argue that in open systems characterised by dynamically changing inter-relationships and tensions, conventional research designs predicated on linearity and predictability must be augmented by the study of how we can best deal with uncertainty, unpredictability and emergent causality. Accordingly, the study of complexity in health services and systems requires new standards of research quality, namely (for example) rich theorising, generative learning, and pragmatic adaptation to changing contexts. This framing of complexity-informed health services research provides a backdrop for a new collection of empirical studies. Each of the initial five papers in this collection illustrates, in different ways, the value of theoretically grounded, methodologically pluralistic, flexible and adaptive study designs. We propose an agenda for future research and invite researchers to contribute to this on-going series.
Group clinics for young adults with diabetes in an ethnically diverse, socioeconomically deprived setting (TOGETHER study): Protocol for a realist review, co-design and mixed methods, participatory evaluation of a new care model
Introduction Young adults with diabetes often report dissatisfaction with care and have poor diabetes-related health outcomes. As diabetes prevalence continues to rise, group-based care could provide a sustainable alternative to traditional one-to-one consultations, by engaging young people through life stage-, context- and culturally-sensitive approaches. In this study, we will co-design and evaluate a group-based care model for young adults with diabetes and complex health and social needs in socioeconomically deprived areas. Methods and analysis This participatory study will include three phases. In phase 1, we will carry out a realist review to synthesise the literature on group-based care for young adults with diabetes. This theory-driven understanding will provide the basis for phase 2, where we will draw on experience-based co-design methodologies to develop a new, group-based care model for young adults (aged <25 years, under the care of adult diabetes services). In phase 3, we will use a researcher-in-residence approach to implement and evaluate the co-designed group clinic model and compare with traditional care. We will employ qualitative (observations in clinics, patient and staff interviews and document analysis) and quantitative methods (eg, biological markers, patient enablement instrument and diabetes distress scale), including a cost analysis. Ethics and dissemination National Health Service ethics approval has been granted (reference 17/NI/0019). The project will directly inform service redesign to better meet the needs of young adults with diabetes in socioeconomically deprived areas and may guide a possible cluster-randomised trial, powered to clinical and cost-effectiveness outcomes. Findings from this study may be transferable to other long-term conditions and/or age groups. Project outputs will include briefing statements, summaries and academic papers, tailored for different audiences, including people living with diabetes, clinicians, policy makers and strategic decision makers.
The NASSS-CAT tools for understanding, guiding, monitoring, and researching technology implementation projects in health and social care: Protocol for an evaluation study in real-world settings
Background: Projects to implement health care and social care innovations involving technologies are typically ambitious and complex. Many projects fail. Greenhalgh et al's nonadoption, abandonment, scale-up, spread, and sustainability (NASSS) framework was developed to analyze the varied outcomes of such projects. Objective: We sought to extend the NASSS framework to produce practical tools for understanding, guiding, monitoring, and researching technology projects in health care or social care settings. Methods: Building on NASSS and a complexity assessment tool (CAT), the NASSS-CAT tools were developed (in various formats) in seven co-design workshops involving 50 stakeholders (industry executives, technical designers, policymakers, managers, clinicians, and patients). Using action research, they were and are being tested prospectively on a sample of case studies selected for variety in conditions, technologies, settings, scope and scale, policy context, and project goals. Results: The co-design process resulted in four tools, available as free downloads. NASSS-CAT SHORT is a taster to introduce the instrument and gauge interest. NASSS-CAT LONG is intended to support reflection, due diligence, and preliminary planning. It maps complexity through stakeholder discussion across six domains, using free-text open questions (designed to generate a rich narrative and surface uncertainties and interdependencies) and a closed-question checklist; this version includes an action planning section. NASSS-CAT PROJECT is a 35-item instrument for monitoring how subjective complexity in a technology implementation project changes over time. NASSS-CAT INTERVIEW is a set of prompts for conducting semistructured research or evaluation interviews. Preliminary data from empirical case studies suggest that the NASSS-CAT tools can potentially identify, but cannot always help reconcile, contradictions and conflicts that block projects' progress. Conclusions: The NASSS-CAT tools are a useful addition to existing implementation tools and frameworks. Further support of the implementation projects is ongoing. We are currently producing digital versions of the tools, and plan (subject to further funding) to establish an online community of practice for people interested in using and improving the tools, and hold workshops for building cross-project collaborations.
The NASSS-CAT Tools for Understanding, Guiding, Monitoring, and Researching Technology Implementation Projects in Health and Social Care: Protocol for an Evaluation Study in Real-World Settings (Preprint)
BACKGROUND Projects to implement health care and social care innovations involving technologies are typically ambitious and complex. Many projects fail. Greenhalgh et al’s nonadoption, abandonment, scale-up, spread, and sustainability (NASSS) framework was developed to analyze the varied outcomes of such projects. OBJECTIVE We sought to extend the NASSS framework to produce practical tools for understanding, guiding, monitoring, and researching technology projects in health care or social care settings. METHODS Building on NASSS and a complexity assessment tool (CAT), the NASSS-CAT tools were developed (in various formats) in seven co-design workshops involving 50 stakeholders (industry executives, technical designers, policymakers, managers, clinicians, and patients). Using action research, they were and are being tested prospectively on a sample of case studies selected for variety in conditions, technologies, settings, scope and scale, policy context, and project goals. RESULTS The co-design process resulted in four tools, available as free downloads. NASSS-CAT SHORT is a taster to introduce the instrument and gauge interest. NASSS-CAT LONG is intended to support reflection, due diligence, and preliminary planning. It maps complexity through stakeholder discussion across six domains, using free-text open questions (designed to generate a rich narrative and surface uncertainties and interdependencies) and a closed-question checklist; this version includes an action planning section. NASSS-CAT PROJECT is a 35-item instrument for monitoring how subjective complexity in a technology implementation project changes over time. NASSS-CAT INTERVIEW is a set of prompts for conducting semistructured research or evaluation interviews. Preliminary data from empirical case studies suggest that the NASSS-CAT tools can potentially identify, but cannot always help reconcile, contradictions and conflicts that block projects’ progress. CONCLUSIONS The NASSS-CAT tools are a useful addition to existing implementation tools and frameworks. Further support of the implementation projects is ongoing. We are currently producing digital versions of the tools, and plan (subject to further funding) to establish an online community of practice for people interested in using and improving the tools, and hold workshops for building cross-project collaborations. INTERNATIONAL REGISTERED REPORT DERR1-10.2196/16861
The use of information for diabetes research and care: Patient views in West London
Data obtained during the care of people with diabetes mellitus may be used to advance research, improve quality, encourage innovation and support better self-care. However, the perspective of people living with diabetes is less well understood. This study examines the views of people with diabetes regarding access to electronic health records (EHRs) for health care and research. Survey data from a sub-group of 404 individuals with diabetes were analysed from a dataset of 5331 West London participants randomly sampled in a cross-sectional survey. These findings were explored in more detail in a focus group discussion involving people with diabetes. Sixty-seven percent of people with diabetes would support the inclusion of their full records on a national EHR for purposes of personal health provision. The vast majority (91%) would prefer to have access to their own full medical history rather than a truncated version. Seventy-nine percent said they would allow their EHR to be used for research: 51% allowing their records to be shared without identifiers and 28% being supportive of access to their identifiable information. A number of themes emerged from the focus group discussion on integrated EHRs, including expectations for improved communication with health professionals, increased participation in the consultation process, responsibility for self-care and data sharing for the greater good. In conclusion, wider sharing of health information may address some of the challenges diabetes care entails, although striking a balance between information fragmentation and sharing remains crucial to improve health, research and quality outcomes.
Patient and public views about the security and privacy of Electronic Health Records (EHRs) in the UK: Results from a mixed methods study Healthcare Information Systems
Background: Although policy discourses frame integrated Electronic Health Records (EHRs) as essential for contemporary healthcare systems, increased information sharing often raises concerns among patients and the public. This paper examines patient and public views about the security and privacy of EHRs used for health provision, research and policy in the UK. Methods: Sequential mixed methods study with a cross-sectional survey (in 2011) followed by focus group discussions (in 2012-2013). Survey participants (N∈=∈5331) were recruited from primary and secondary care settings in West London (UK). Complete data for 2761 (51.8 %) participants were included in the final analysis for this paper. The survey results were discussed in 13 focus groups with people living with a range of different health conditions, and in 4 mixed focus groups with patients, health professionals and researchers (total N∈=∈120). Qualitative data were analysed thematically. Results: In the survey, 79 % of participants reported that they would worry about the security of their record if this was part of a national EHR system and 71 % thought the National Health Service (NHS) was unable to guarantee EHR safety at the time this work was carried out. Almost half (47 %) responded that EHRs would be less secure compared with the way their health record was held at the time of the survey. Of those who reported being worried about EHR security, many would nevertheless support their development (55 %), while 12 % would not support national EHRs and a sizeable proportion (33 %) were undecided. There were also variations by age, ethnicity and education. In focus group discussions participants weighed up perceived benefits against potential security and privacy threats from wider sharing of information, as well as discussing other perceived risks: commercial exploitation, lack of accountability, data inaccuracies, prejudice and inequalities in health provision. Conclusions: Patient and public worries about the security risks associated with integrated EHRs highlight the need for intensive public awareness and engagement initiatives, together with the establishment of trustworthy security and privacy mechanisms for health information sharing.