Conducting a team-based multi-sited focused ethnography in primary care

© 2017 The Author(s). Focused ethnography is an applied and pragmatic form of ethnography that explores a specific social phenomenon as it occurs in everyday life. Based on the literature a problem-focused research question is formulated before the data collection. The data generation process targets key informants and situations so that relevant results on the pre-defined topic can be obtained within a relatively short time-span. As part of a theory based evaluation of alternative forms of consultation (such as video, phone and email) in primary care we used the focused ethnographic method in a multisite study in general practice across the UK. To date there is a gap in the literature on using focused ethnography in healthcare research. The aim of the paper is to build on the various methodological approaches in health services research by presenting the challenges and benefits we encountered whilst conducing a focused ethnography in British primary care. Our considerations are clustered under three headings: constructing a shared understanding, dividing the tasks within the team, and the functioning of the focused ethnographers within the broader multi-disciplinary team. As a result of using this approach we experienced several advantages, like the ability to collect focused data in several settings simultaneously within in a short time-span. Also, the sharing of experiences and interpretations between the researchers contributed to a more holistic understanding of the research topic. However, mechanisms need to be in place to facilitate and synthesise the observations, guide the analysis, and to ensure that all researchers feel engaged. Reflection, trust and flexibility among the team members were crucial to successfully adopt a team focused ethnographic approach. When used for policy focussed applied healthcare research a team-based multi-sited focused ethnography can uncover practices and understandings that would not be apparent through surveys or interviews alone. If conducted with care, it can provide timely findings within the fast moving context of healthcare policy and research

Unintended consequences of patient online access to health records: a qualitative study in UK primary care

Background: Health systems around the world are seeking to harness digital tools to promote patient autonomy and increase the efficiency of care. One example of this policy in England is online patient access to full medical records in primary care. Since April 2019, all NHS England patients have had the right to access their full medical record prospectively, and full record access has been the “default position” since April 2020. / Aim: To identify and understand the unintended consequences of online patient access their medical record. / Design and Setting: Qualitative interview study in 10 general practices in South West and North West England. / Method: Semi-structured individual interviews with 13 patients and 16 general practice staff with experience of patient online access to health records. / Results: Online access generated unintended consequences that negatively impacted patients’ understanding of their health care, for example patients discovering surprising information or information that was difficult to interpret. Online access impacted GPs’ documentation practices, such as when GPs pre-emptively attempted to minimise potential misunderstandings to aid patient understanding of their health care, in other cases, negatively impacting the quality of the records and patient safety when GPs avoided documenting their speculations or concerns. Contrary to assumptions that practice workload would be reduced, online access introduced extra work, such as managing and monitoring access and taking measures to prevent possible harm to patients. / Conclusion: The unintended consequences described by both staff and patients show that to achieve the intended consequences set out in NHS policy additional work is necessary to prepare records for sharing and prepare patients about what to expect. It is crucial that practices are adequately supported and resourced to manage the unintended consequences of online access now that it is the default position

Financial considerations in the conduct of multi-centre randomised controlled trials: evidence from a qualitative study.

National Coordinating Centre for Research Methodology; Medical Research Council, UK Department of Health; Chief Scientist OfficeNot peer reviewedPublisher PD

FPU β\beta model: Boundary Jumps, Fourier's Law and Scaling

We examine the interplay of surface and volume effects in systems undergoing heat flow. In particular, we compute the thermal conductivity in the FPU $\beta$ model as a function of temperature and lattice size, and scaling arguments are used to provide analytic guidance. From this we show that boundary temperature jumps can be quantitatively understood, and that they play an important role in determining the dynamics of the system, relating soliton dynamics, kinetic theory and Fourier transport.Comment: 5pages, 5 figure

The face of equipoise - delivering a structured education programme within a randomized controlled trial: qualitative study

Background: In trials of behavioural interventions, the individuals who deliver the intervention are in a position of key influence on the success of the trial. Their fidelity to the intervention is crucial. Yet little is understood about the experiences of this group of trial personnel. This study aimed to investigate the views and experiences of educators who delivered a structured education intervention to people with type 2 diabetes, which incorporated training in self-monitoring of either blood glucose (SMBG) or urine glucose (SMUG) as part of a randomized controlled trial (RCT). Methods: Educators’ views were explored through focus groups before and after training (N = 18) and approximately 1 year into the trial (N = 14), and semi-structured telephone interviews at approximately 2 years (N = 7). Analysis was based on the constant comparative method. Results: Educators held preferences regarding the intervention variants; thus, they were not in individual equipoise. Training raised awareness of preferences and their potential to impact on delivery. Educators were confident in their unbiased delivery, but acknowledged the challenges involved. Concealing their preferences was helped by a sense of professionalism, the patient-centred nature of the intervention, and concessions in the trial protocol (enabling participants to swap monitoring methods if needed). Commitment to unbiased delivery was explained through a desire for evidence-based knowledge in the contentious area of SMBG. Conclusions: The findings provide insight into a previously unexplored group of trial personnel - intervention deliverers in trials of behavioural interventions - which will be useful to those designing and running similar trials. Rather than individual equipoise, it is intervention deliverers’ awareness of personal preferences and their potential impact on the trial outcome that facilitates unbiased delivery. Further, awareness of community equipoise, the need for evidence, and relevance to the individual enhance commitment to the RCT

Forensic child and Adolescent Psychiatry and mental health in Europe

Background When faced with the discovery of their child’s self-harm, mothers and fathers may re-evaluate their parenting strategies. This can include changes to the amount of support they provide their child and changes to the degree to which they control and monitor their child. Methods We conducted an in-depth qualitative study with 37 parents of young people who had self-harmed in which we explored how and why their parenting changed after the discovery of self-harm. Results Early on, parents often found themselves “walking on eggshells” so as not to upset their child, but later they felt more able to take some control. Parents’ reactions to the self-harm often depended on how they conceptualised it: as part of adolescence, as a mental health issue or as “naughty behaviour”. Parenting of other children in the family could also be affected, with parents worrying about less of their time being available for siblings. Many parents developed specific strategies they felt helped them to be more effective parents, such as learning to avoid blaming themselves or their child for the self-harm and developing new ways to communicate with their child. Parents were generally eager to pass their knowledge on to other people in the same situation. Conclusions Parents reported changes in their parenting behaviours after the discovery of a child’s self-harm. Professionals involved in the care of young people who self-harm might use this information in supporting and advising parents.</p

Outcome related to impact on daily living: preliminary validation of the ORIDL instrument

<p>Abstract</p> <p>Background</p> <p>The challenge of finding practical, patient-rated outcome measures is a key issue in the evaluation of health care systems and interventions. The ORIDL (Outcome in Relation to Impact on Daily Living) instrument (formerly referred to as the Glasgow Homoeopathic Hospital Outcomes Scale or GHHOS) has been developed to measure patient's views of the outcome of their care by asking about change, and relating this to impact on daily life. The aim of the present paper is to describe the background and potential uses of the ORIDL, and to report on its preliminary validation in a series of three studies in secondary and primary care.</p> <p>Methods</p> <p>In the first study, 105 patients attending the Glasgow Homoeopathic Hospital (GHH) were followed-up at 12 months and changes in health status were measured by the EuroQol (EQOL) and the ORIDL. In the second study, 187 new patients at the GHH were followed-up at 3, 12, and 33 months, using the ORIDL, the Short Form 12 (SF-12), and the Measure Yourself Medical Outcome Profile (MYMOP). In study three, 323 patients in primary care were followed for 1 month post-consultation using the ORIDL and MYMOP. In all 3 studies the Patient Enablement Instrument (PEI) was also used as an outcome measure.</p> <p>Results</p> <p>Study 1 showed substantial improvements in main complaint and well-being over 12 months using the ORIDL, with two-thirds of patients reporting improvements in daily living. These improvements were not significantly correlated with changes in serial measures of the EQOL between baseline and 12 months, but were correlated with the EQOL transitions measure. Study 2 showed step-wise improvements in ORIDL scores between 3 and 33 months, which were only weakly associated with similar changes in SF-12 scores. However, MYMOP change scores correlated well with ORIDL scores at all time points. Study 3 showed similar high correlations between ORIDL scores and MYMOP scores. In all 3 studies, ORIDL scores were also significantly correlated with PEI-outcome scores.</p> <p>Conclusion</p> <p>There is significant agreement between patient outcomes assessed by the ORIDL and the EQOL transition scale, the MYMOP, and the PEI-outcome instrument, suggesting that the ORIDL may be a valid and sensitive tool for measuring change in relation to impact on life.</p

Implementing an innovative consent form: the PREDICT experience

<p>Abstract</p> <p>Background</p> <p>In the setting of coronary angiography, generic consent forms permit highly variable communication between patients and physicians. Even with the existence of multiple risk models, clinicians have been unable to readily access them and thus provide patients with vague estimations regarding risks of the procedure.</p> <p>Methods</p> <p>We created a web-based vehicle, PREDICT, for embedding patient-specific estimates of risk from validated multivariable models into individualized consent documents at the point-of-care. Beginning August 2006, outpatients undergoing coronary angiography at the Mid America Heart Institute received individualized consent documents generated by PREDICT. In February 2007 this approach was expanded to all patients undergoing coronary angiography within the four Kansas City hospitals of the Saint Luke's Health System. Qualitative research methods were used to identify the implementation challenges and successes with incorporating PREDICT-enhanced consent documents into routine clinical care from multiple perspectives: administration, information systems, nurses, physicians, and patients.</p> <p>Results</p> <p>Most clinicians found usefulness in the tool (providing clarity and educational value for patients) and satisfaction with the altered processes of care, although a few cardiologists cited delayed patient flow and excessive patient questions. The responses from administration and patients were uniformly positive. The key barrier was related to informatics.</p> <p>Conclusion</p> <p>This preliminary experience suggests that successful change in clinical processes and organizational culture can be accomplished through multidisciplinary collaboration. A randomized trial of PREDICT consent, leveraging the accumulated knowledge from this first experience, is needed to further evaluate its impact on medical decision-making, patient compliance, and clinical outcomes.</p

The Contribution of Social Networks to the Health and Self-Management of Patients with Long-Term Conditions: A Longitudinal Study

Evidence for the effectiveness of patient education programmes in changing individual self-management behaviour is equivocal. More distal elements of personal social relationships and the availability of social capital at the community level may be key to the mobilisation of resources needed for long-term condition self-management to be effective. Aim: To determine how the social networks of people with long-term conditions (diabetes and heart disease) are associated with health-related outcomes and changes in outcomes over time. Methods: Patients with chronic heart disease (CHD) or diabetes (n = 300) randomly selected from the disease registers of 19 GP practices in the North West of England. Data on personal social networks collected using a postal questionnaire, alongside face-to-face interviewing. Follow-up at 12 months via postal questionnaire using a self-report grid for network members identified at baseline. Analysis: Multiple regression analysis of relationships between health status, self-management and health economics outcomes, and characteristics of patients’ social networks. Results: Findings indicated that: (1) social involvement with a wider variety of people and groups supports personal self-management and physical and mental well-being; (2) support work undertaken by personal networks expands in accordance with health needs helping people to cope with their condition; (3) network support substitutes for formal care and can produce substantial saving in traditional health service utilisation costs. Health service costs were significantly (p0.01) reduced for patients receiving greater levels of illness work through their networks. Conclusions: Support for self-management which achieves desirable policy outcomes should be construed less as an individualised set of actions and behaviour and more as a social network phenomenon. This study shows the need for a greater focus on harnessing and sustaining the capacity of networks and the importance of social involvement with community groups and resources for producing a more desirable and cost-effective way of supporting long term illness management