[Show abstract][Hide abstract] ABSTRACT: This study explores the provision of clinical genetic services in Colombia, in order to promote improvements in these services. We carried out semi-structured interviews with 20 doctors working in genetic clinics, and we report the challenges in providing genetic counselling that they have identified. Education and training in genetics in Colombian medical schools were described as inadequate, and interviewees found that many of their medical colleagues knew too little to be able to refer appropriately to a genetics service. The doctors interviewed recognised their own limitations, including lack of knowledge, absence of training in communication skills and the strong influence of religious beliefs on the consultations of some colleagues. There may also be communication problems during the consultation: patients may fail to understand the explanations given or to accept the incurable nature of genetic conditions. There are also problems with access, because genetic services are not covered by the health insurance system in Colombia. More training in genetics is required at medical schools in Colombia, at the undergraduate and postgraduate level. There was a consensus that most medical specialities are limited in their knowledge, awareness and understanding of genetics. Furthermore, many medical geneticists did not believe that other health professionals should work as genetic counsellors. These findings may assist in the development of improved genetic counselling services in Colombia and in the establishment of an enhanced academic curriculum of basic and clinical genetics at Colombian universities.
Journal of community genetics 06/2015; 6(3). DOI:10.1007/s12687-015-0237-1
[Show abstract][Hide abstract] ABSTRACT: Objectives To undertake an assessment of the association between coproduction and satisfaction with decisions made for local healthcare communities.
Design A coproduction scale was developed and tested to measure individual National Health Service (NHS) commissioners’ satisfaction with commissioning decisions.
Setting 11 English Primary Care Trusts in 2010–2011.
Participants Staff employed at NHS band 7 or above involved in commissioning decisions in the NHS. 345/440 (78%) of participants completed part of all of the survey.
Main outcome measure Reliability and validity of a coproduction scale were assessed using a correlation-based principal component analysis model with direct oblimin rotation. Multilevel modelling was used to predict decision satisfaction.
Results The analysis revealed that coproduction consisted of three principal components: productive discussion, information and dealing with uncertainty. Higher decision satisfaction was associated with smaller decisions, more productive discussion, decisions where information was readily available to use and those where decision-making tools were more often used.
Conclusions The research indicated that coproduction may be an important factor for satisfaction with decision-making in the commissioning of healthcare services.
BMJ Open 06/2014; 4(6):e004810. DOI:10.1136/bmjopen-2014-004810 · 2.27 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Collaborations for Leadership in Applied Health Research and Care (CLAHRCs) were an initiative of the National Institute for Health Research in response to a new research and development strategy in the NHS: ‘Best Research for Best Health’. They were designed to address the ‘second gap in translation’ identified by the Cooksey review; namely, the need to improve health care in the UK by translating clinical research into practice more effectively. Nine CLAHRCs, each encompassing a university in partnership with local NHS bodies, were funded over the period 2008–13.
The aim of this report is to provide an independent and theory-based evaluation of CLAHRCs as a new form of networked innovation in the health sector. This evaluation is based on an intensive research study involving three CLAHRCs in the UK and three international organisations (one in the USA and two in Canada). This study was carried out over two overlapping time phases so as to capture changes in the CLAHRCs over time. Networked innovation in the health sector is conceptualised as involving the translation of knowledge via informal social networks.
A mix of research methods was used to help ensure the validity and generalisability of the study. These methods addressed the development of each CLAHRC over time, over multiple levels of analysis, and with particular reference to the translation of knowledge across the groups involved, and the quality of the informal underpinning network ties that supported such translation. Research methods, therefore, included a qualitative enquiry based on case studies and case analysis, cognitive mapping methods, and social network analysis.
Through our study, we found that each one of our samples of CLAHRCs appropriated the CLAHRC idea in a particular way, depending on their different interpretations or ‘visions’ of the CLAHRC’s role in knowledge translation (KT), and different operating models of how such visions could be achieved. These helped to shape the development of social networks (centralised vs. decentralised) and each CLAHRC’s approach to KT activity (‘bridging’ vs. ‘blurring’ the boundaries between professional groups). Through a comparative analysis, we develop an analytical model of the resultant capabilities which each case, including our international sites, developed for undertaking innovation, encompassing a combination of both ‘integrative capability’ (the ability to move back and forth between scientific evidence and practical application) and ‘relational capability’ (the ability of groups and organisations to work together). This extends previous models of KT by highlighting the effects of leadership and management, and the emergence of social network structures. We further highlight the implications of this analysis for policy and practice by discussing how network structures and boundary-spanning roles and activities can be tailored to different KT objectives.
Different interpretations and enactments of the CLAHRC mission ultimately led to differing capabilities for KT among our studied initiatives. Further research could usefully explore how these different capabilities are produced, and how they may be more or less appropriate for particular national health-care settings, with a view to improving the design blueprint for future KT initiatives.
The National Institute for Health Research Health Services and Delivery Research programme.
[Show abstract][Hide abstract] ABSTRACT: We evaluated the advice given by a prototype self-assessment triage system in a university student health centre. Students attending the health centre with a new problem used the automated self-assessment system prior to a face-to-face consultation with the general practitioner (GP). The system's rating of urgency was available to the GP, and following the consultation, the GP recorded their own rating of the urgency of the patient's presentation. Full data were available for 154 of the 207 consultations. Perfect agreement, where both the GP and the self-assessment system selected the same category of advice, occurred in 39% of consultations. The association between the GP assessment and the self-assessment rankings of urgency was low but significant (rho = 0.19, P = 0.016). The self-assessment system tended to be risk averse compared to the GP assessments, with advice for more urgent level of care seeking being recommended in 86 consultations (56%) and less urgent advice in only 8 (5%). This difference in assessment of urgency was significant (P < 0.001). The agreement between self-assessed and GP-assessed urgency was not associated with symptom site or socio-demographic characteristics of the user. Although the self-assessment system was more risk averse than the GPs, which resulted in a high proportion of patients being triaged as needing emergency or immediate care, the self-assessment system successfully identified a proportion of patients who were felt by the GP to have a self-limiting condition that did not need a consultation. In its prototype form, the self-assessment system was not a replacement for clinician assessment and further refinement is necessary.
Journal of Telemedicine and Telecare 03/2014; 20(3). DOI:10.1177/1357633X14529246 · 1.54 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: This study describes how the level of graphical realism required in a virtual social simulation setting can be therapeutically useful in reducing job interview anxiety through exposure. We developed a virtual job interview simulation at a university career service to help student populations faced with the prospect of their first job interview. The virtual job interview simulation can deliver a realistic mock job interview within a high-quality immersive system that is similar to professional virtual reality (VR) systems. We conducted two experimental studies with a common theme: the role of graphical reality of the virtual interviewer and the immersive visual display in the virtual job interview simulation. The results are presented in this study based on a psycho-physiological approach, revealing variation in the distribution of participants′ anxiety state across various VR conditions. The overall conclusion of this study is that the sense of anxiety is less correlated to the graphical realism in VR environment even though the more graphically detailed the virtual human was, the more it provoked a sense of presence. In addition, at least some degree of physical immersion is needed to maintain anxiety levels over the course of VR exposure.
International Journal of Human-Computer Studies 10/2013; 71(10):978–987. DOI:10.1016/j.ijhcs.2013.07.003 · 1.29 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: To perform a systematic review of the literature on the prevalence of cognitive impairment and dementia in sub-Saharan Africa.
Five electronic databases were searched for relevant abstracts and to identify papers eligible for full-text review. A study was included if two authors agreed that it had a cohort, case-control or cross-sectional design and reported population-level data; was limited to black African adults older than 50 years or described as "elderly" or "old"; reported data for individuals residing in sub-Saharan Africa; and reported at least one measure of cognitive impairment or clinical outcomes relevant to cognitive decline. References of papers included in our study were searched to identify additional candidate publications. Disagreements about inclusion were adjudicated during discussions involving all authors. Data were extracted independently by two authors, using a form developed by the authors and tested on a sample of papers.
A total of 2320 unique papers was found; the full text of 87 was reviewed. Nineteen papers featuring 11 cross-sectional studies were included; all were published during 1995-2011. Studies occurred in Benin, Botswana, the Central African Republic, the Congo and Nigeria and enrolled approximately 10 500 participants. The prevalence of dementia ranged from 0%, in Nigeria, to 10.1% (95% confidence interval, CI: 8.6-11.8), also in Nigeria. The prevalence of cognitive impairment ranged from 6.3%, in Nigeria, to 25% (95% CI: 21.2-29.0), in the Central African Republic.
Prevalences of dementia and cognitive impairment in sub-Saharan Africa varied widely, with few published studies revealed by the literature search.
Bulletin of the World Health Organisation 10/2013; 91(10):773-783. DOI:10.2471/BLT.13.118422 · 5.09 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Venoplasty has been proposed, alongside the theory of chronic cerebrospinal venous insufficiency (CCSVI), as a treatment for multiple sclerosis (MS). Despite concerns about its efficacy and safety, thousands of patients have undergone the procedure. This paper analyses YouTube videos where patients have shared their treatment experiences.
Content analysis on the 100 most viewed videos from over 4000 identified in a search for 'CCSVI', and qualitative thematic analysis on popular 'channels' demonstrating patients' experiences.
Videos adopt an overwhelmingly positive stance towards CCSVI; many were uploaded by patients and present pre- and/or post-treatment experiences. Patients demonstrate rather than merely describe their symptoms, performing tests on themselves before and after treatment to quantify improvement. Videos combine medical terminology and tests with personal experiences of living with MS.
Social media technologies provide patients with novel opportunities for advocating for particular treatments; generating alternative forms of 'evidence' built on a hybrid of personal experience and medical knowledge.
Healthcare practitioners need to engage with new digital forms of content, including online social media. Instead of disregarding sources not considered 'evidence-based', practitioners should enhance their understanding of what 'experiential-evidence' is deemed significant to patients, particularly in contested areas of healthcare.
[Show abstract][Hide abstract] ABSTRACT: To investigate types of evidence used by healthcare commissioners when making decisions and whether decisions were influenced by commissioners' experience, personal characteristics or role at work.
Cross-sectional survey of 345 National Health Service (NHS) staff members.
The study was conducted across 11 English Primary Care Trusts between 2010 and 2011.
A total of 440 staff involved in commissioning decisions and employed at NHS band 7 or above were invited to participate in the study. Of those, 345 (78%) completed all or a part of the survey.
Participants were asked to rate how important different sources of evidence (empirical or practical) were in a recent decision that had been made. Backwards stepwise logistic regression analyses were undertaken to assess the contributions of age, gender and professional background, as well as the years of experience in NHS commissioning, pay grade and work role.
The extent to which empirical evidence was used for commissioning decisions in the NHS varied according to the professional background. Only 50% of respondents stated that clinical guidelines and cost-effectiveness evidence were important for healthcare decisions. Respondents were more likely to report use of empirical evidence if they worked in Public Health in comparison to other departments (p<0.0005, commissioning and contracts OR 0.32, 95%CI 0.18 to 0.57, finance OR 0.19, 95%CI 0.05 to 0.78, other departments OR 0.35, 95%CI 0.17 to 0.71) or if they were female (OR 1.8 95% CI 1.01 to 3.1) rather than male. Respondents were more likely to report use of practical evidence if they were more senior within the organisation (pay grade 8b or higher OR 2.7, 95%CI 1.4 to 5.3, p=0.004 in comparison to lower pay grades).
Those trained in Public Health appeared more likely to use external empirical evidence while those at higher pay scales were more likely to use practical evidence when making commissioning decisions. Clearly, National Institute for Clinical Excellence (NICE) guidance and government publications (eg, National Service Frameworks) are important for decision-making, but practical sources of evidence such as local intelligence, benchmarking data and expert advice are also influential. New Clinical Commissioning Groups will need a variety of different evidence sources and expert involvement to ensure that effective decisions are made for their populations.
BMJ Open 05/2013; 3(5). DOI:10.1136/bmjopen-2013-002714 · 2.27 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Illness narratives play a central role in social studies of health and illness, serving as both a key theoretical focus and a popular research method. Despite this, relatively little work has gone into conceptualising how and why illness narratives - be they in books, websites, television or other media - are commodified in contemporary healthcare and its social environment; namely, how distinctive forms of value are generated in the production, circulation, use and exchange of illness narratives. In this article we propose the notion of biographical value as a first step towards conceptualising the values attributed to illness narratives in this context. Based on a secondary analysis of 37 interviews with people affected by 15 different health conditions in the UK (all of whom have shared their illness experiences across various media) and drawing on understandings of value in research on the bioeconomy and the concept of biovalue in particular, we sketch out how epistemic, ethical and economic forms of value converge and co-constitute each other in the notion of biographical value and in broader economies of illness experiences.
Sociology of Health & Illness 04/2013; 35(6). DOI:10.1111/1467-9566.12001 · 1.88 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Venoplasty—dubbed the liberation procedure—has been proposed with the controversial theory of chronic cerebrospinal venous insufficiency (CCSVI), as a possible treatment for multiple sclerosis. Despite concerns about its effectiveness and safety, thousands of patients have undergone this procedure. Those with positive results often become vocal advocates and use internet technologies to express their support. In the extant published work, social media is both credited and criticised as affecting research and policy decisions. However, no in-depth analysis has been done of how internet technologies are actually being used in this context.
The Lancet 11/2012; 380:S20. DOI:10.1016/S0140-6736(13)60376-1 · 45.22 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: To explore the use of metaphoric language to convey emotion in interviews with people affected by motor neurone disease, a progressive neurological condition that sits between chronic and terminal illness.
Secondary analysis of 46 interviews with people affected by motor neurone disease in the United Kingdom (35 individuals with the condition, 11 carers).
Metaphor and figurative language was used to communicate the intensely emotional experiences of being diagnosed with and living with motor neurone disease. We focus on three pervasive themes that were threaded throughout the interviews: battling and fighting; the self under attack and journeying through a physical and emotional landscape.
This secondary analysis of qualitative research interviews enriches our understanding of the articulation of emotion in motor neurone disease and adds to the literature on metaphor in chronic illness. Of particular interest is how the metaphors used contrasted with other conditions in the relative absence of metaphors of 'fighting' the disease. Furthermore, we analyse the ways in which participants used metaphors to give voice to emotions that are extremely difficult to articulate in 'literal' language, and how, in doing so, they blurred the distinction between 'physical' symptoms and 'emotional' states. Sensitivity to metaphors may help professionals communicate with people affected by motor neurone disease.
[Show abstract][Hide abstract] ABSTRACT: The sharing of experiences between patients has become increasingly privileged as a source of knowledge and support in contemporary healthcare. Despite this, relatively little is known about the processes whereby people's experiences become, or fail to become, valued as sources of health-related knowledge in different contexts. Through a secondary analysis of 87 interviews conducted between 2006 and 2008 in the UK with people affected by motor neurone disease (46 interviews) and Parkinson's disease (41 interviews), we explore the identity work involved in turning other people's experiences into 'experiential knowledge' that can be shared between patients. Of particular interest is how the turning of others' experiences into knowledge is presupposed by negotiating a particular type of identity tension - what, drawing on the work of Paul Ricoeur (2003) on metaphor, we refer to as 'being differently the same'. We examine the way in which people living with motor neurone disease and Parkinson's disease spoke of managing this tension as part of the process of accessing and valuing other patients' experiences, both epistemologically and emotionally. Instead of treating others' experiences as a pre-given source of knowledge, we emphasise how experience comes to be embodied and articulated through different media - bodies, speech, text, and images. Moreover, we suggest that paying closer attention to these media provides opportunities for enhancing our understanding of how people with different chronic and/or terminal illnesses use or do not use different forms of peer support - and in particular online ones - as a source of health-related experiential knowledge. Some of the implications of this are discussed in the specific context of people diagnosed with incurable neurodegenerative conditions characterised by visible physical deterioration and associated emotional distress.
Social Science [?] Medicine 02/2012; 74(4):546-53. DOI:10.1016/j.socscimed.2011.10.036 · 2.89 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: We explore peer-to-peer discussions which took place in a UK-based diabetes 'Virtual Clinic' online community. In particular, we seek to understand the rhetorical nature and content of exchanges over a period of six months from the community's inception. Data were captured weekly and analysis based on thematic discourse analysis. Two key issues emerged regarding how the community shaped the nature of the discussion forum. First, the identity of the forum was established, and boundaries drawn about what was, and was not, acceptable. Second, participants sought to present themselves as reliable and authoritative sources of information. Internet discussion communities are shaped in important ways early on by the community of users, including how the character and focus of discussion is formed, and how both information and users can be constructed as authoritative and reliable.
Health 11/2011; 16(4):347-65. DOI:10.1177/1363459311425514 · 2.10 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Examine the effectiveness and impacts of the networked communication technologies used by health care professionals for the treatment of adolescents/young adults with mental health disorders.
Nine electronic databases were searched. Quantitative and qualitative study designs were included, technologies were described and a narrative synthesis of all included studies was undertaken.
20,925 papers were identified from which 12 interventions met the inclusion criteria. Three categories of networked communication were identified: email and/or web-based electronic diary (n=6); videoconference (n=5); and virtual reality (n=1). Three studies reported statistically significant improvements in symptoms post intervention; all involved email communication. Patients were willing to use networked communication in routine care in nine studies.
Networked communication technologies can increase the opportunity for communication between patient and health care professionals. Limited improvements in quality of life and continuity of care for patients were reported. Patients and health care professionals expressed some satisfaction with technologies. Further research exploring concerns over privacy and security is needed.
Networked communication technologies have the potential to be a useful addition to mental health services delivery, however the impact and effectiveness of these technologies is inconclusive.
[Show abstract][Hide abstract] ABSTRACT: Purpose: In England, local NHS commissioners plan, fund and review health services ranging from emergency to community-based care for a defined population. We aimed to investigate use of evidence, extent of co-production (collaboration and interaction between players in commissioning decisions) and factors associated with self-rated quality of decisions by local commissioners of health services.
Method: Cross sectional survey of decision making quality by a random sample of commissioners in England stratified to reflect population size and level of deprivation. Measures used: three measures of evidence/information use and influence - two previously validated, one designed de novo; two measures of quality of decisions - the Decisional Conflict Scale and the COMRADE scale (both adapted for use for organizational-level decision-making); one measure of co-production developed de novo. Demographic and job role data were collected alongside characteristics of the commissioning organization. Analysis was undertaken using backwards, stepwise, multiple linear regression.
Result: Two hundred and eighty commissioners from 11 representative organizations in England responded (77% response; 63% complete surveys). Twenty three per cent considered “available budget/cost savings” as the most influential factor on commissioning decisions with “evidence of effectiveness” the second most influential factor (11%). Regression analysis suggested that both perceived influence of evidence (of safety/quality, effectiveness and cost-effectiveness) and overall levels of co-production were associated with perceived decision quality. These factors in combination explained 14% of the variation in decision satisfaction. (Influence of evidence (standardised beta=0.24); co-production (standardised beta=0.21)).
Conclusion: Organizational decision making to plan services, and the uses of evidence are important in all health care systems. Perceived quality of commissioning decision-making for our respondents appeared to be affected both by extent of co-production and by the influence of evidence. We found no appropriate definitive measures of quality of decision making and used adapted individual clinical level decision quality tools. Large changes are planned in the English NHS, groups of family physicians are soon to take over running much of the budget (£65bn (62%)). They will need enhanced understanding of commissioning, decision making and evidence. A squeeze in real terms is predicted and difficult decisions will be needed. The process is complex and our results suggest that that there will be important lessons for these new commissioners to learn.
The 33rd Annual Meeting of the Society for Medical Decision Making; 10/2011
[Show abstract][Hide abstract] ABSTRACT: Purpose: In this paper, we explore how rational decision making is accomplished in practice in the context of individual funding reviews which involve decisions about whether to fund treatments in exceptional cases. In this context the groups involved overtly seek to arrive at rational and publically defensible decisions. We address the following important questions: What resources do actors rely on to perform their roles as ‘rational’ decision makers? What models of rational judgement do organisational actors draw upon in practice, and how? Our suggested answers to these questions advance understanding of rational decision making in healthcare.
Method: We conducted a focused ethnography of decision making in the English National Health Service (NHS). Our empirical setting was healthcare purchasing (commissioning) organisations, which consider individual funding requests (IFRs) made for medicines or other treatments that are not routinely purchased. We observed in real time the making of decisions for 118 IFR cases, which generally involved thorough evaluation of the available evidence and supporting documentation. We analysed our rich observational data iteratively and thematically.
Result: Our analysis revealed that, for rational decision making to be accomplished, organisational actors perform three kinds of interrelated activities: (i) addressing procedural requirements, (ii) interpreting and making sense of decision cases and (iii) deliberating the merits of cases on the basis of public reasons. Our data indicate that decision makers seek rationality, by, not only calculating the consequences of their decisions for individual patients, but also (and mainly) crafting a robust and rigorous justification on the basis of evidence as regards the funding merits of their decision. This form of decision making, we suggest, represents a distinct pursuit of rational judgement in practice.
Conclusion: Our study makes an important contribution to our understanding of how rationality is sought and performed in actual healthcare organisational situations. Our investigation of IFR decision making in the NHS suggests that the understanding of rationality may be significantly improved if we address and examine the pursuit of rational judgement as a situated empirical phenomenon. The results of our focused ethnography vividly demonstrate in fact that deciding rationally and appearing to do so is a complex and uncertain social process bounded by demands for rigorous justifications of a decision.
The 33rd Annual Meeting of the Society for Medical Decision Making; 10/2011