Patient-shared knowledge and information in clinical decision-making : an international survey of the perspectives and experiences of naturopathic practitioners

Introduction Most knowledge translation models pay relatively little attention to patient-held knowledge and are largely based on the premise that researchers and clinicians hold all valuable knowledge, and patients are passive recipients of such knowledge. Counter to this clinician- and researcher-centred lens is a growing interest and awareness of patients as experts in their health. While naturopathic medicine is described and experienced as a patient-centred system of traditional medicine, the position of patient-held knowledge is unclear particularly when considered alongside their use of other more objective forms of knowledge such as research evidence. Methods This international online cross-sectional survey aimed to explore naturopathic practitioners’ perceptions of the value and contribution of patient-shared knowledge and information within the context of naturopathic clinical consultations. Results The survey was completed by 453 naturopathic practitioners (response rate: 74.3%). Approximately two-thirds (68.2%) of respondents reported using information shared by the patient. Most rated ‘information provided by the patient’ as either ‘extremely important’ (60.7%) or ‘very important’ (31.4%) to patients. Highest levels of trust were reported for information provided by the patient (‘completely’: 9.9%; ‘a lot’: 53.6%). Most practitioners indicated they trusted knowledge and information derived from the patient’s personal health history ‘completely’(n=79; 21.8%) or ‘a lot’(n=226; 62.4%) from the patient’s perspective of living with a health condition (‘completely’[n=63, 17.4%]; ‘a lot’[n=224, 61.9%]). Patients were the highest ranked stakeholder group (mean: 1.5) perceived to influence NP use of patient experience of living with a health condition to inform clinical decision-making. Conclusion Researchers and policy makers are increasingly focused on the value of the ‘expert patient’ in clinical decision-making, yet health professionals’ report challenges and, in some cases, resistance to meaningfully engaging with patient-shared knowledge in practice. However, our study has found patient-shared knowledge – inclusive of patient experience of their health condition – is among the knowledge used and trusted by naturopathic practitioners to inform their clinical decision-making. This study both offers insights into the knowledge translation behaviours of an under-researched health profession and provides a novel contribution to the wider aim of adopting patient shared knowledge into clinical care more generally.Publisher PDFPeer reviewe

The development and application of audit criteria for assessing knowledge exchange plans in health research grant applications.

Background: Research funders expect evidence of end user engagement and impact plans in research proposals. Drawing upon existing frameworks, we developed audit criteria to help researchers and their institutions assess the knowledge exchange plans of health research proposals. Findings: Criteria clustered around five themes: problem definition; involvement of research users; public and patient engagement; dissemination and implementation; and planning, management and evaluation of knowledge exchange. We applied these to a sample of grant applications from one research institution in the United Kingdom to demonstrate feasibility. Conclusion: Our criteria may be useful as a tool for researcher self-assessment and for research institutions to assess the quality of knowledge exchange plans and identify areas for systematic improvement

A framework to support the design and cultivation of embedded research initiatives

This work was supported by the National Institute of Health Research (NIHR) Health Services & Delivery Research (HS&DR) programme under grant number 16/52/21.Background: Embedded research involves co-locating researchers within non-academic organisations to better link research and practice. Embedded research initiatives are often complex and emergent with a range of underlying intents, structures and processes. This can create tensions within initiatives and contributes to ongoing uncertainty about the most suitable designs and the effectiveness of different approaches. Aims and objectives: We aimed to devise a practical framework to support those designing and cultivating embedded research by operationalising findings from an extensive study of existing initiatives. Key conclusions: The underpinning research on embedded initiatives – a literature review and scoping exercise of initiatives in health settings across the UK – showed that such initiatives share ten common sets of concerns in relation to their intent, structure and processes. We used these insights during a co-production workshop with embedded researchers and their managers that made use of a range of creative activities. The workshop resulted in a practical framework (and associated web-based tools) that draw on the metaphor of a garden to represent the growing, emergent nature of embedded research initiatives and the active work which individuals and organisations need to put into planning and maintaining such initiatives. Each of the aspects is represented as a separate area within the garden using relevant visual metaphors. Building on this, we also present a series of reflective questions designed to facilitate discussion and debate about design features, and we link these to the wider literature, thereby helping those involved to articulate and discuss their preferences and expectations.Publisher PDFPeer reviewe

Histological renal osteodystrophy, and 25 hydroxycholecalciferol and aluminum levels in patients on continuous ambulatory peritoneal dialysis

Renal osteodystrophy, which influences the quality of life and contributes to the morbidity of patients with endstage renal failure [1], has been reported to deteriorate in patients treated with continuous ambulatory peritoneal dialysis (CAPD) [2]. However, better control of serum calcium and phosphate in these patients [3] has provided preliminary data that show improvement in histological grading of osteitis fibrosa (OF) in our patients treated with CAPD [41.Another form of bone disease, the osteomalacic dialysis osteodystrophy (OM), which may be associated with dialysis encephalopathy, is thought in some instances to be due to aluminum toxicity [5] from untreated or softened water used in hemodialysis in areas where the aluminum content of water supplies is high [6]. In patients undergoing CAPD any exposure to aluminum is likely to stem from the use of aluminum-containing phosphate binders (ACPB) since the process of preparation of peritoneal dialysis fluid reduces most of the trace metals.In our unit, since the inception of the CAPD program in January 1979, 72 patients have been treated by this method in the first 2 years. In this report we present data on the improvement of histological renal osteodystrophy in CAPD patients and relate this to serum concentrations of calcium, phosphate, 25 hydroxycholecalciferol [25-(0H)CC] and immunoreactive parathormone (PTH). In addition, sequential serum aluminum concentrations are reported. These levels have been related to concentrations of aluminum in the peritoneal dialysis (PD) fluid and to the use of ACPB. One patient with aluminum toxicity prior to starting CAPD was studied to evaluate the chelating effect of disferrioxamine (DFO) on aluminum and its subsequent removal in the PD fluid

Comparison of methods for in-house screening of HLA*B57:01 to prevent abacavir hypersensitivity in HIV-1 care

Abacavir is a nucleoside reverse transcriptase inhibitor used as part of combination antiretroviral therapy in HIV-1-infected patients. Because this drug can cause a hypersensitivity reaction that is correlated with the presence of the HLA-B*57:01 allotype, screening for the presence of HLA-B*57:01 is recommended before abacavir initiation. Different genetic assays have been developed for HLA-B*57:01 screening, each with specific sensitivity, turnaround time and assay costs. Here, a new real-time PCR (qPCR) based analysis is described and compared to sequence specific primer PCR with capillary electrophoresis (SSP PCR CE) on 149 patient-derived samples, using sequence specific oligonucleotide hybridization combined with high resolution SSP PCR as gold standard. In addition to these PCR based methods, a complementary approach was developed using flow cytometry with an HLA-B17 specific monoclonal antibody as a pre-screening assay to diminish the number of samples for genetic testing. All three assays had a maximum sensitivity of >99. However, differences in specificity were recorded, i.e. 84.3%, 97.2% and >99% for flow cytometry, qPCR and SSP PCR CE respectively. Our data indicate that the most specific and sensitive of the compared methods is the SSP PCR CE. Flow cytometry pre-screening can substantially decrease the number of genetic tests for HLA-B*57:01 typing in a clinical setting

Optimising the impact of health services research on the organisation and delivery of health services : a mixed-methods study

The research reported in this issue of the journal was funded by the HSDR programme or one of its preceding programmes as project number 16/52/21.Background The limitations of ‘knowledge transfer’ are increasingly recognised, with growing interest in ‘knowledge co-production in context’. One way of achieving the latter is by ‘embedding’ researchers in health service settings, yet how to deliver such schemes successfully is poorly understood. Objectives The objectives were to examine the nature of ‘embedded knowledge co-production’ and explore how embedded research initiatives can be designed more effectively. Design The study used four linked workstreams. Workstream 1 involved two parallel literature reviews to examine how ‘knowledge co-production’ and ‘embedded research’ are conceptualised, operationalised and discussed. In workstream 2, a scoping review of exisiting or recent ‘embedded researcher’ schemes in UK health settings was carried out. Workstream 3 involved developing four in-depth case studies on such schemes to understand their mechanisms, effectiveness and challenges. In workstream 4, insights from the other workstreams were used to provide recommendations, guidance and templates for the different ways embedded co-production may be framed and specified. The overall goal was to help those interested in developing and using such approaches to understand and address the design choices they face. Setting Embedded research initiatives in UK health settings. Data sources Data were sourced from the following: analysis of the published and grey literature (87 source articles on knowledge co-production, and 47 published reports on extant embedded research initiatives), documentation and interviews with key actors across 45 established embedded research initiatives, in-depth interviews and site observations with 31 participants over 12 months in four intensive case studies, and informal and creative engagement in workshops (n = 2) and with participants in embedded research initiatives who joined various managed discussion forums. Participants The participants were stakeholders and participants in embedded research initiatives. Results The literature reviews from workstream 1 produced practical frameworks for understanding knowledge co-production and embedded research initiatives, which, with the scoping review (workstream 2), informed the identification and articulation of 10 design concerns under three overarching categories: intent (covering outcomes and power dynamics), structures (scale, involvement, proximity and belonging) and processes (the functional activities, skills and expertise required, nature of the relational roles, and the learning mechanisms employed). Current instances of embedded research were diverse across many of these domains. The four case studies (workstream 3) added insights into scheme dynamics and life cycles, deepening understanding of the overarching categories and showing the contingencies experienced in co-producing knowledge. A key finding is that there was often a greater emphasis on embeddedness per se than on co-production, which can be hard to discern. Finally, the engaging and influencing activities running throughout (workstream 4) allowed these research-rooted insights to be translated into practical tools and resources, evidenced by peer-reviewed publications, for those interested in exploring and developing the approach. Conclusions Embedded research has a strong underpinning rationale, and more is becoming known about its design and management challenges. The tools and resources developed in this project provide a coherent evidence-informed framework for designing, operationalising and managing such schemes. It cannot yet be said with clarity that the potential benefits of embedded research are always deliverable, nor what the cost would be. Future work With the means to describe and categorise different types of embedded research initiatives, more evaluative work is now needed to examine the relative merits and costs of different designs. Funding This project was funded by the National Institute for Health Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 3. See the NIHR Journals Library website for further project information.Publisher PDFPeer reviewe

Explaining variable effects of an adaptable implementation package to promote evidence-based practice in primary care : a longitudinal process evaluation

This study is funded by the National Institute for Health Research (NIHR) [Programme Grants for Applied Research (Grant Reference Number RP-PG-1209-10040)] (https://www.nihr.ac.uk/).Background Implementing evidence-based recommendations is challenging in UK primary care, especially given system pressures and multiple guideline recommendations competing for attention. Implementation packages that can be adapted and hence applied to target multiple guideline recommendations could offer efficiencies for recommendations with common barriers to achievement. We developed and evaluated a package of evidence-based interventions (audit and feedback, educational outreach and reminders) incorporating behaviour change techniques to target common barriers, in two pragmatic trials for four “high impact” indicators: risky prescribing; diabetes control; blood pressure control; and anticoagulation in atrial fibrillation. We observed a significant, cost-effective reduction in risky prescribing but there was insufficient evidence of effect on the other outcomes. We explored the impact of the implementation package on both social processes (Normalisation Process Theory; NPT) and hypothesised determinants of behaviour (Theoretical Domains Framework; TDF). Methods We conducted a prospective multi-method process evaluation. Observational, administrative and interview data collection and analyses in eight primary care practices were guided by NPT and TDF. Survey data from trial and process evaluation practices explored fidelity. Results We observed three main patterns of variation in how practices responded to the implementation package. First, in integration and achievement, the package “worked” when it was considered distinctive and feasible. Timely feedback directed at specific behaviours enabled continuous goal setting, action and review, which reinforced motivation and collective action. Second, impacts on team-based determinants were limited, particularly when the complexity of clinical actions impeded progress. Third, there were delivery delays and unintended consequences. Delays in scheduling outreach further reduced ownership and time for improvement. Repeated stagnant or declining feedback that did not reflect effort undermined engagement. Conclusions Variable integration within practice routines and organisation of care, variable impacts on behavioural determinants, and delays in delivery and unintended consequences help explain the partial success of an adaptable package in primary care.Publisher PDFPeer reviewe

Variations in achievement of evidence-based, high-impact quality indicators in general practice: an observational study

Background: There are widely recognised variations in the delivery and outcomes of healthcare but an incomplete understanding of their causes. There is a growing interest in using routinely collected ‘big data’ in the evaluation of healthcare. We developed a set of evidence-based ‘high impact’ quality indicators (QIs) for primary care and examined variations in achievement of these indicators using routinely collected data in the United Kingdom (UK). Methods: Cross-sectional analysis of routinely collected, electronic primary care data from a sample of general practices in West Yorkshire, UK (n = 89). The QIs covered aspects of care (including processes and intermediate clinical outcomes) in relation to diabetes, hypertension, atrial fibrillation, myocardial infarction, chronic kidney disease (CKD) and ‘risky’ prescribing combinations. Regression models explored the impact of practice and patient characteristics. Clustering within practice was accounted for by including a random intercept for practice. Results: Median practice achievement of the QIs ranged from 43.2% (diabetes control) to 72.2% (blood pressure control in CKD). Considerable between-practice variation existed for all indicators: the difference between the highest and lowest performing practices was 26.3 percentage points for risky prescribing and 100 percentage points for anticoagulation in atrial fibrillation. Odds ratios associated with the random effects for practices emphasised this; there was a greater than ten-fold difference in the likelihood of achieving the hypertension indicator between the lowest and highest performing practices. Patient characteristics, in particular age, gender and comorbidity, were consistently but modestly associated with indicator achievement. Statistically significant practice characteristics were identified less frequently in adjusted models. Conclusions: Despite various policy and improvement initiatives, there are enduring inappropriate variations in the delivery of evidence-based care. Much of this variation is not explained by routinely collected patient or practice variables, and is likely to be attributable to differences in clinical and organisational behaviour