ePrescribing-Based Antimicrobial Stewardship Practices in an English National Health Service Hospital: Qualitative Interview Study Among Medical Prescribers and Pharmacists.

BACKGROUND: Antimicrobial resistance, the ability of microorganisms to survive antimicrobial drugs, is a public health emergency. Although electronic prescribing (ePrescribing)-based interventions designed to reduce unnecessary antimicrobial usage exist, these often do not integrate effectively with existing workflows. As a result, ePrescribing-based interventions may have limited impact in addressing antimicrobial resistance. OBJECTIVE: We sought to understand the existing ePrescribing-based antimicrobial stewardship (AMS) practices in an English hospital preceding the implementation of functionality designed to improve AMS. METHODS: We conducted 18 semistructured interviews with medical prescribers and pharmacists with varying levels of seniority exploring current AMS practices and investigating potential areas for improvement. Participants were recruited with the help of local gatekeepers. Topic guides sought to explore both formal and informal practices surrounding AMS, and challenges and opportunities for ePrescribing-based intervention. We coded audio-recorded and transcribed data with the help of the Technology, People, Organizations, and Macroenvironmental factors framework, allowing emerging themes to be added inductively. We used NVivo 12 (QSR International) to facilitate coding. RESULTS: Antimicrobial prescribing and review processes were characterized by competing priorities and uncertainty of prescribers and reviewers around prescribing decisions. For example, medical prescribers often had to face trade-offs between individual patient benefit and more diffuse population health benefits, and the rationale for prescribing decisions was not always clear. Prescribing involved a complex set of activities carried out by various health care practitioners who each only had a partial and temporary view of the whole process, and whose relationships were characterized by deeply engrained hierarchies that shaped interactions and varied across specialties. For example, newly qualified doctors and pharmacists were hesitant to change a consultant's prescribing decision when reviewing prescriptions. Multidisciplinary communication, collaboration, and coordination promoted good AMS practices by reducing uncertainty. CONCLUSIONS: Design of ePrescribing-based interventions to improve AMS needs to take into account the multitude of actors and organizational complexities involved in the prescribing and review processes. Interventions that help reduce prescriber or reviewer uncertainty and improve multidisciplinary collaboration surrounding initial antimicrobial prescribing and subsequent prescription review are most likely to be effective. Without such attention, interventions are unlikely to fulfill their goal of improving patient outcomes and combatting antimicrobial resistance.

Benefits realization management in the context of a national digital transformation initiative in English provider organizations.

BACKGROUND: The Global Digital Exemplar (GDE) Programme is a national initiative to promote digitally enabled transformation in English provider organizations. The Programme applied benefits realization management techniques to promote and demonstrate transformative outcomes. This work was part of an independent national evaluation of the GDE Programme. AIMS: We explored how benefits realization management was approached and conceptualized in the GDE Programme. METHODS: We conducted a series of 36 longitudinal case studies of provider organizations participating in the GDE Programme, 12 of which were in depth. Data collection included a combination of 628 interviews (with implementation staff in provider organizations, national programme management staff, and suppliers), 499 documents (of national and local implementation plans and lessons learned), and 190 nonparticipant observations (of national and local programme management meetings to develop insights into the broader context of benefits realization activities, tensions arising, and how these were negotiated). Data were coded drawing on a sociotechnical framework developed in related work and thematically analyzed, initially within and then across cases, with the help of NVivo 11 software. RESULTS: Most stakeholders broadly agreed with the rationale of benefits realization in the GDE Programme to show due diligence that public money was appropriately spent, and to develop an evidence base supporting the value of digitally enabled transformation. Differing national and local reporting purposes, however, created tensions. Central requirements, for progress reporting and tracking high-level benefits, had limited perceived local value and were seen to impose an unnecessary burden on provider organizations. This was accentuated by the lack of harmonization of reporting requirements to different stakeholders (which differed in content and timing). There were tensions between the desire for early evidence of outcomes and the slow processes of infrastructural change (which created problems of attribution of benefits to causes as benefits emerged gradually and over long timeframes), and also between reporting immediately visible local changes and showing how these flowed through to high level organization wide benefits (eg, in terms of health outcomes or cost savings/return on investment). The attempt to fulfill these diverging agendas and informational needs within a single reporting tool had limited success. These difficulties were mitigated by efforts to simplify reporting requirements and to support targeted collection of key national outcome measures. Although progress was hampered by an initial lack of benefits realization expertise in provider organizations, some providers subsequently retained these skills for their own change management purposes. CONCLUSIONS: There is a need to recognize the limitations and cost of benefits realization management practices in the context of healthcare digitalization where benefits may materialize over long timeframes and in unanticipated ways. Although diverse stakeholder information needs may create tensions, prior agreement about rationales for collecting information and a targeted approach to tracking local and high-level benefits may enhance local relevance, reduce perceived reporting burdens, and improve acceptance/effectiveness. A single integrated reporting mechanism is unlikely to fulfill both national and local requirements.

Driving digital health transformation in hospitals: a formative qualitative evaluation of the English Global Digital Exemplar programme.

BACKGROUND: There is currently a strong drive internationally towards creating digitally advanced healthcare systems through coordinated efforts at a national level. The English Global Digital Exemplar (GDE) programme is a large-scale national health information technology change programme aiming to promote digitally-enabled transformation in secondary healthcare provider organisations by supporting relatively digitally mature provider organisations to become international centres of excellence. AIM: To qualitatively evaluate the impact of the GDE programme in promoting digital transformation in provider organisations that took part in the programme. METHODS: We conducted a series of in-depth case studies in 12 purposively selected provider organisations and a further 24 wider case studies of the remaining organisations participating in the GDE programme. Data collected included 628 interviews, non-participant observations of 190 meetings and workshops and analysis of 9 documents. We used thematic analysis aided by NVivo software and drew on sociotechnical theory to analyse the data. RESULTS: We found the GDE programme accelerated digital transformation within participating provider organisations. This acceleration was triggered by: (1) dedicated funding and the associated requirement for matched internal funding, which in turn helped to prioritise digital transformation locally; (2) governance requirements put in place by the programme that helped strengthen existing local governance and project management structures and supported the emergence of a cadre of clinical health informatics leaders locally; and (3) reputational benefits associated with being recognised as a centre of digital excellence, which facilitated organisational buy-in for digital transformation and increased negotiating power with vendors. CONCLUSION: The GDE programme has been successful in accelerating digital transformation in participating provider organisations. Large-scale digital transformation programmes in healthcare can stimulate local progress through protected funding, putting in place governance structures and leveraging reputational benefits for participating provider organisations, around a coherent vision of transformation.

Promoting inter-organisational knowledge sharing: A qualitative evaluation of England's Global Digital Exemplar and Fast Follower Programme.

BACKGROUND: The Global Digital Exemplar (GDE) Programme was designed to promote the digitisation of hospital services in England. Selected provider organisations that were reasonably digitally-mature were funded with the expectation that they would achieve internationally recognised levels of excellence and act as exemplars ('GDE sites') and share their learning with somewhat less digitally-mature Fast Follower (FF) sites. AIMS: This paper explores how partnerships between GDE and FF sites have promoted knowledge sharing and learning between organisations. METHODS: We conducted an independent qualitative longitudinal evaluation of the GDE Programme, collecting data across 36 provider organisations (including acute, mental health and speciality), 12 of which we studied as in-depth ethnographic case studies. We used a combination of semi-structured interviews with programme leads, vendors and national policy leads, non-participant observations of meetings and workshops, and analysed national and local documents. This allowed us to explore both how inter-organisational learning and knowledge sharing was planned, and how it played out in practice. Thematic qualitative analysis, combining findings from diverse data sources, was facilitated by NVivo 11 and drew on sociotechnical systems theory. RESULTS: Formally established GDE and FF partnerships were perceived to enhance learning and accelerate adoption of technologies in most pairings. They were seen to be most successful where they had encouraged, and were supported by, informal knowledge networking, driven by the mutual benefits of information sharing. Informal networking was enhanced where the benefits were maximised (for example where paired sites had implemented the same technological system) and networking costs minimised (for example by geographical proximity, prior links and institutional alignment). Although the intervention anticipated uni-directional learning between exemplar sites and 'followers', in most cases we observed a two-way flow of information, with GDEs also learning from FFs, through informal networking which also extended to other health service providers outside the Programme. The efforts of the GDE Programme to establish a learning ecosystem has enhanced the profile of shared learning within the NHS. CONCLUSIONS: Inter-organisational partnerships have produced significant gains for both follower (FF) and exemplar (GDE) sites. Formal linkages were most effective where they had facilitated, and were supported by, informal networking. Informal networking was driven by the mutual benefits of information sharing and was optimised where sites were well aligned in terms of technology, geography and culture. Misalignments that created barriers to networking between organisations in a few cases were attributed to inappropriate choice of partners. Policy makers seeking to promote learning through centrally directed mechanisms need to create a framework that enables networking and informal knowledge transfer, allowing local organisations to develop bottom-up collaboration and exchanges, where they are productive, in an organic manner.

Interorganizational Knowledge Sharing to Establish Digital Health Learning Ecosystems: Qualitative Evaluation of a National Digital Health Transformation Program in England.

BACKGROUND: The English Global Digital Exemplar (GDE) program is one of the first concerted efforts to create a digital health learning ecosystem across a national health service. OBJECTIVE: This study aims to explore mechanisms that support or inhibit the exchange of interorganizational digital transformation knowledge. METHODS: We conducted a formative qualitative evaluation of the GDE program. We used semistructured interviews with clinical, technical, and managerial staff; national program managers and network leaders; nonparticipant observations of knowledge transfer activities through attending meetings, workshops, and conferences; and documentary analysis of policy documents. The data were thematically analyzed by drawing on a theory-informed sociotechnical coding framework. We used a mixture of deductive and inductive methods, supported by NVivo software, to facilitate coding. RESULTS: We conducted 341 one-on-one and 116 group interviews, observed 86 meetings, and analyzed 245 documents from 36 participating provider organizations. We also conducted 51 high-level interviews with policy makers and vendors; performed 77 observations of national meetings, workshops, and conferences; and analyzed 80 national documents. Formal processes put in place by the GDE program to initiate and reinforce knowledge transfer and learning have accelerated the growth of informal knowledge networking and helped establish the foundations of a learning ecosystem. However, formal networks were most effective when supported by informal networking. The benefits of networking were enhanced (and costs reduced) by geographical proximity, shared culture and context, common technological functionality, regional and strategic alignments, and professional agendas. CONCLUSIONS: Knowledge exchange is most effective when sustained through informal networking driven by the mutual benefits of sharing knowledge and convergence between group members in their organizational and technological setting and goals. Policy interventions need to enhance incentives and reduce barriers to sharing across the ecosystem, be flexible in tailoring formal interventions to emerging needs, and promote informal knowledge sharing.

Using Blueprints to promote interorganizational knowledge transfer in digital health initiatives-a qualitative exploration of a national change program in English hospitals.

OBJECTIVE: The Global Digital Exemplar (GDE) Program is a national attempt to accelerate digital maturity in healthcare providers through promoting knowledge transfer across the English National Health Service (NHS). "Blueprints"-documents capturing implementation experience-were intended to facilitate this knowledge transfer. Here we explore how Blueprints have been conceptualized, produced, and used to promote interorganizational knowledge transfer across the NHS. MATERIALS AND METHODS: We undertook an independent national qualitative evaluation of the GDE Program. This involved collecting data using semistructured interviews with implementation staff and clinical leaders in provider organizations, nonparticipant observation of meetings, and key documents. We also attended a range of national meetings and conferences, interviewed national program managers, and analyzed a range of policy documents. Our analysis drew on sociotechnical principles, combining deductive and inductive methods. RESULTS: Data comprised 508 interviews, 163 observed meetings, and analysis of 325 documents. We found little evidence of Blueprints being adopted in the manner originally conceived by national program managers. However, they proved effective in different ways to those planned. As well as providing a helpful initial guide to a topic, we found that Blueprints served as a method of identifying relevant expertise that paved the way for subsequent discussions and richer knowledge transfers amongst provider organizations. The primary value of Blueprinting, therefore, seemed to be its role as a networking tool. Members of different organizations came together in developing, applying, and sustaining Blueprints through bilateral conversations-in some circumstances also fostering informal communities of practice. CONCLUSIONS: Blueprints may be effective in facilitating knowledge transfer among healthcare organizations, but need to be accompanied by other evolving methods, such as site visits and other networking activities, to iteratively transfer knowledge and experience.

Formative independent evaluation of a digital change programme in the English National Health Service: study protocol for a longitudinal qualitative study.

INTRODUCTION: Many countries are launching large-scale, digitally enabled change programmes as part of efforts to improve the quality, safety and efficiency of care. We have been commissioned to conduct an independent evaluation of a major national change programme, the Global Digital Exemplar (GDE) Programme, which aims to develop exemplary digital health solutions and encourage their wider adoption by creating a learning ecosystem across English National Health Service (NHS) provider organisations. METHODS AND ANALYSIS: This theoretically informed, qualitative, longitudinal formative evaluation comprises five inter-related work packages. We will conduct a combination of 12 in-depth and 24 broader qualitative case studies in GDE sites exploring digital transformation, local learning and mechanisms of spread of knowledge within the Programme and across the wider NHS. Data will be collected through a combination of semistructured interviews with managers, implementation staff (clinical and non-clinical), vendors and policymakers, plus non-participant observations of meetings, site visits, workshops and documentary analysis of strategic local and national plans. Data will be analysed through inductive and deductive methods, beginning with in-depth case study sites and testing the findings against data from the wider sample and national stakeholders. ETHICS AND DISSEMINATION: This work is commissioned as part of a national change programme and is therefore a service evaluation. We have ethical approval from the University of Edinburgh. Results will be disseminated at six monthly intervals to national policymakers, and made available via our publicly accessible website. We will also identify lessons for the management and evaluation of large-scale evolving digital health change programmes that are of international relevance.

Technological Capabilities to Assess Digital Excellence in Hospitals in High Performing Health Care Systems: International eDelphi Exercise.

BACKGROUND: Hospitals worldwide are developing ambitious digital transformation programs as part of broader efforts to create digitally advanced health care systems. However, there is as yet no consensus on how best to characterize and assess digital excellence in hospitals. OBJECTIVE: Our aim was to develop an international agreement on a defined set of technological capabilities to assess digital excellence in hospitals. METHODS: We conducted a two-stage international modified electronic Delphi (eDelphi) consensus-building exercise, which included a qualitative analysis of free-text responses. In total, 31 international health informatics experts participated, representing clinical, academic, public, and vendor organizations. RESULTS: We identified 35 technological capabilities that indicate digital excellence in hospitals. These are divided into two categories: (a) capabilities within a hospital (n=20) and (b) capabilities enabling communication with other parts of the health and social care system, and with patients and carers (n=15). The analysis of free-text responses pointed to the importance of nontechnological aspects of digitally enabled change, including social and organizational factors. Examples included an institutional culture characterized by a willingness to transform established ways of working and openness to risk-taking. The availability of a range of skills within digitization teams, including technological, project management and business expertise, and availability of resources to support hospital staff, were also highlighted. CONCLUSIONS: We have identified a set of criteria for assessing digital excellence in hospitals. Our findings highlight the need to broaden the focus from technical functionalities to wider digital transformation capabilities.

Theoretical and methodological considerations in evaluating large-scale health information technology change programmes.

BACKGROUND: Attempts to achieve digital transformation across the health service have stimulated increasingly large-scale and more complex change programmes. These encompass a growing range of functions in multiple locations across the system and may take place over extended timeframes. This calls for new approaches to evaluate these programmes. MAIN BODY: Drawing on over a decade of conducting formative and summative evaluations of health information technologies, we here build on previous work detailing evaluation challenges and ways to tackle these. Important considerations include changing organisational, economic, political, vendor and markets necessitating tracing of evolving networks, relationships, and processes; exploring mechanisms of spread; and studying selected settings in depth to understand local tensions and priorities. CONCLUSIONS: Decision-makers need to recognise that formative evaluations, if built on solid theoretical and methodological foundations, can help to mitigate risks and help to ensure that programmes have maximum chances of success.

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.

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.

Unexpected consequences: women's experiences of a self-hypnosis intervention to help with pain relief during labour.

BACKGROUND: Self-hypnosis is becoming increasingly popular as a means of labour pain management. Previous studies have produced mixed results. There are very few data on women's views and experiences of using hypnosis in this context. As part of a randomized controlled trial of self-hypnosis for intra-partum pain relief (the SHIP Trial) we conducted qualitative interviews with women randomized to the intervention arm to explore their views and experiences of using self-hypnosis during labour and birth. METHODS: Participants were randomly selected from the intervention arm of the study, which consisted of two antenatal self-hypnosis training sessions and a supporting CD that women were encouraged to listen to daily from 32 weeks gestation until the birth of their baby. Those who consented were interviewed in their own homes 8-12 weeks after birth. Following transcription, the interviews were analysed iteratively and emerging concepts were discussed amongst the authors to generate organizing themes. These were then used to develop a principal organizing metaphor or global theme, in a process known as thematic networks analysis. RESULTS: Of the 343 women in the intervention group, 48 were invited to interview, and 16 were interviewed over a 12 month period from February 2012 to January 2013. Coding of the data and subsequent analysis revealed a global theme of 'unexpected consequences', supported by 5 organising themes, 'calmness in a climate of fear', 'from sceptic to believer', 'finding my space', 'delays and disappointments' and 'personal preferences'. Most respondents reported positive experiences of self-hypnosis and highlighted feelings of calmness, confidence and empowerment. They found the intervention to be beneficial and used a range of novel strategies to personalize their self-hypnosis practice. Occasionally women reported feeling frustrated or disappointed when their relaxed state was misinterpreted by midwives on admission or when their labour and birth experiences did not match their expectations. CONCLUSION: The women in this study generally appreciated antenatal self-hypnosis training and found it to be beneficial during labour and birth. The state of focused relaxation experienced by women using the technique needs to be recognized by providers if the intervention is to be implemented into the maternity service.

Patients' attitudes and perceptions of two health-related quality-of-life questionnaires used to collect patient-reported outcome measures in the English National Health Service: A qualitative study of patients undergoing cardiac interventions.

OBJECTIVES: To explore patients' views on the EuroQol-5D and Coronary Revascularisation Outcome Questionnaire, tools currently used for collecting patient-reported outcome measures in the English National Health Service. The key questions were as follows: (1) whether patients consider them sensitive enough to detect change in their health after cardiovascular disease interventions and (2) whether they consider the health-related quality-of-life questions as meaningful. METHODS: Data were collected on patients' views using focus groups. We held four focus groups selecting participants on the basis of their baseline and follow-up EuroQol-5D scores. Data were analysed using framework analysis and grounded theory. RESULTS: Focus group participants confirmed that they had derived substantial health benefits from their cardiac interventions despite the lack of measurable effects on the EuroQol-5D scores. Participants felt that the EuroQol-5D questionnaire was limited because of the following reasons: Their health fluctuates from day to day.They had difficulty assessing their general health status on the visual analogue scale.They felt that the Coronary Revascularisation Outcome Questionnaire was limited because of the following reasons: They did not understand the clinical terms used.The impact of tiredness on their quality of life was not captured.They were unable to distinguish between the effects of their heart condition and other health issues.Additionally, neither questionnaire considers the adjustments people have made to their domestic arrangements to improve their health-related quality of life. CONCLUSION: This study provides evidence that the two questionnaires do not capture some aspects of health that patients consider important. Furthermore, the presence of co-morbidities masks the symptoms relating to the heart disease and the effect of their cardiac interventions. Future work on patient-reported outcome measures should consider developing new questionnaires that address these major concerns.

"This does my head in". Ethnographic study of self-management by people with diabetes.

BACKGROUND: Self-management is rarely studied 'in the wild'. We sought to produce a richer understanding of how people live with diabetes and why self-management is challenging for some. METHOD: Ethnographic study supplemented with background documents on social context. We studied a socio-economically and ethnically diverse UK population. We sampled 30 people with diabetes (15 type 1, 15 type 2) by snowballing from patient groups, community contacts and NHS clinics. Participants (aged 5-88, from a range of ethnic and socio-economic groups) were shadowed at home and in the community for 2-4 periods of several hours (total 88 visits, 230 hours); interviewed (sometimes with a family member or carer) about their self-management efforts and support needs; and taken out for a meal. Detailed field notes were made and annotated. Data analysis was informed by structuration theory, which assumes that individuals' actions and choices depend on their dispositions and capabilities, which in turn are shaped and constrained (though not entirely determined) by wider social structures. RESULTS: Self-management comprised both practical and cognitive tasks (e.g. self-monitoring, menu planning, medication adjustment) and socio-emotional ones (e.g. coping with illness, managing relatives' input, negotiating access to services or resources). Self-management was hard work, and was enabled or constrained by economic, material and socio-cultural conditions within the family, workplace and community. Some people managed their diabetes skilfully and flexibly, drawing on personal capabilities, family and social networks and the healthcare system. For others, capacity to self-manage (including overcoming economic and socio-cultural constraints) was limited by co-morbidity, cognitive ability, psychological factors (e.g. under-confidence, denial) and social capital. The consequences of self-management efforts strongly influenced people's capacity and motivation to continue them. CONCLUSION: Self-management of diabetes is physically, intellectually, emotionally and socially demanding. Non-engagement with self-management may make sense in the context of low personal resources (e.g. health literacy, resilience) and overwhelming personal, family and social circumstances. Success of self-management as a policy solution will be affected by interacting influences at three levels: [a] at micro level by individuals' dispositions and capabilities; [b] at meso level by roles, relationships and material conditions within the family and in the workplace, school and healthcare organisation; and [c] at macro level by prevailing economic conditions, cultural norms and expectations, and the underpinning logic of the healthcare system. We propose that the research agenda on living with diabetes be extended and the political economy of self-management systematically studied.

Exploring the influence of service user involvement on health and social care services for cancer.

BACKGROUND: Service user involvement in health and social care is a key policy driver in the UK. In cancer care it is central to developing services which are effective, responsive and accessible to patients. Cancer network partnership groups are set up to enable joint working between service users and health care professionals and to drive service improvements. AIMS AND OBJECTIVES: The aim of this study was to explore the influence of the cancer network partnership groups' service user involvement activities on cancer care. DESIGN: This was a qualitative study involving documentary analysis and in-depth case studies of a sample of partnership groups. SETTING AND PARTICIPANTS: Five partnership groups were purposively selected as case studies from Macmillan regions across the UK; documents were collated from a further five groups. Forty people, including core group members and key stakeholders in cancer services, were interviewed. RESULTS AND CONCLUSIONS: The evidence from this study suggests that cancer network partnership groups are at their most influential at 'grass roots' level - contributing to patient information resources, enhancing access to services, and improving care environments. While such improvements are undoubtedly important to patients, the groups' aim is to influence strategic changes, for example in cancer care commissioning or macro-level policy decision-making. The evolution of open, participatory relationships between service users and professionals, and recognition of the value of experiential knowledge are seen as key factors in influencing cancer care. The provision of dedicated resources to strengthen service user involvement activities is also vital.

Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace.

OBJECTIVE: To evaluate the policy making process, implementation by NHS organisations, and patients' and carers' experiences of efforts to introduce an internet accessible personal electronic health record (HealthSpace) in a public sector healthcare system. DESIGN: Mixed method, multilevel case study. SETTING: English National Health Service; the basic HealthSpace technology (available throughout England) and the advanced version (available in a few localities where this option had been introduced) were considered. MAIN OUTCOME MEASURES: National statistics on invitations sent, HealthSpace accounts created, and interviews and ethnographic observation of patients and carers. Data analysis was informed by a socio-technical approach which considered macro and micro influences on both adoption and non-adoption of innovations, and by the principles of critical discourse analysis. PARTICIPANTS: 56 patients and carers (of whom 21 opened a basic HealthSpace account, 20 had diabetes but were not initially using HealthSpace, and 15 used advanced HealthSpace accounts to exchange messages with their general practitioner), 3000 pages of documents (policies, strategies, business plans, minutes of meetings, correspondence), observational field notes, and 160 interviews with policy makers, project managers, and clinical staff. RESULTS: Between 2007 and October 2010, 172 950 people opened a basic HealthSpace account. 2913 (0.13% of those invited) opened an advanced account, compared with 5-10% of the population anticipated in the original business case. Overall, patients perceived HealthSpace as neither useful nor easy to use and its functionality aligned poorly with their expectations and self management practices. Those who used email-style messaging were positive about its benefits, but enthusiasm beyond three early adopter clinicians was low, and fewer than 100 of 30 000 patients expressed interest. Policy makers' hopes that "deploying" HealthSpace would lead to empowered patients, personalised care, lower NHS costs, better data quality, and improved health literacy were not realised over the three year evaluation period. CONCLUSION: Unless personal electronic health records align closely with people's attitudes, self management practices, identified information needs, and the wider care package (including organisational routines and incentive structures for clinicians), the risk that they will be abandoned or not adopted at all is substantial. Conceptualising such records dynamically (as components of a socio-technical network) rather than statically (as containers for data) and employing user centred design techniques might improve their chances of adoption and use. The findings raise questions about how eHealth programmes in England are developed and approved at policy level.

Patients' attitudes to the summary care record and HealthSpace: qualitative study.

OBJECTIVE: To document the views of patients and the public towards the summary care record (SCR, a centrally stored medical record drawn from the general practice record) and HealthSpace (a personal health organiser accessible through the internet from which people can view their SCR), with a particular focus on those with low health literacy, potentially stigmatising conditions, or difficulties accessing health care. DESIGN: 103 semistructured individual interviews and seven focus groups. SETTING: Three early adopter primary care trusts in England where the SCR and HealthSpace are being piloted. All were in areas of relative socioeconomic deprivation. PARTICIPANTS: Individual participants were recruited from general practice surgeries, walk-in centres, out of hours centres, and accident and emergency departments. Participants in focus groups were recruited through voluntary sector organisations; they comprised advocates of vulnerable groups and advocates of people who speak limited English; people with HIV; users of mental health services; young adults; elderly people; and participants of a drug rehabilitation programme. METHODS: Participants were asked if they had received information about the SCR and HealthSpace and about their views on shared electronic records in different circumstances. RESULTS: Most people were not aware of the SCR or HealthSpace and did not recall receiving information about it. They saw both benefits and drawbacks to having an SCR and described a process of weighing the former against the latter when making their personal choice. Key factors influencing this choice included the nature of any illness (especially whether it was likely to lead to emergency care needs); past and present experience of healthcare and government surveillance; the person's level of engagement and health literacy; and their trust and confidence in the primary healthcare team and the wider NHS. Overall, people with stigmatising illness were more positive about the SCR than people who claimed to speak for "vulnerable groups." Misconceptions about the SCR were common, especially confusion about what data it contained and who would have access to it. Most people were not interested in recording their medical data or accessing their SCR via HealthSpace, but some saw the potential for this new technology to support self management and lay care for those with chronic illness. CONCLUSION: Despite an extensive information programme in early adopter sites, the public remains unclear about current policy on shared electronic records, though most people view these as a positive development. The "implied consent" model for creating and accessing a person's SCR should be revisited, perhaps in favour of "consent to view" at the point of access.

Screening tools for depressed mood after childbirth in UK-based South Asian women: a systematic review.

AIM: This paper is a report of a systematic review to answer the question: what is the relevance, acceptability, validity and effectiveness of tools designed to screen for postnatal depressed mood for South Asian women living in the UK? BACKGROUND: Standard methods to screen women for postnatal depressed mood were developed with Caucasian populations. This study reviews postnatal screening tools adapted or developed for United Kingdom-based South Asian women. METHOD: A structured systematic review of English language studies initially was completed between 1980 and May 2003, and later updated to January 2005. The review was based on an a priori search strategy with inclusion and exclusion criteria and analysis included a quality assessment tool. Findings were tabulated against criteria for acceptability and effectiveness of diagnostic tools. RESULTS: Seven papers were included in the review. None addressed all preset quality criteria. Four papers among them reported on translations of two existing tools (Edinburgh Postnatal Depression Scale and General Household Questionnaire). Two new tools were reported between the remaining three papers (Punjabi Postnatal Depression Scale and 'Doop Chaon'. Doop Chaon is a visual tool. The other tools used either Bengali or Punjabi, based on written scales. The General Household Questionnaire did not appear to be appropriate for this population. None of the studies were rigorous enough to demonstrate generalizable sensitivity or specificity. Qualitative data indicated that women preferred face-to-face interviews to self-complete questionnaires. CONCLUSIONS: None of the tools are currently sufficiently evaluated for clinical practice. Questions are raised specifically about use of language-based tools to measure postnatal depressed mood in this population and about the extent to which focused interviews could be used as an alternative for specific sub-sections of population groups.