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

BACKGROUND: Health systems are seeking to harness digital tools to promote patient autonomy and increase the efficiency of care worldwide. The NHS Long Term Plan created the right for patients to access 'digital first' primary care by 2023-2024, including online patient access to full medical records. AIM: To identify and understand the unintended consequences of online patient access to medical records. 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, with patients finding surprising or difficult to interpret information. 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, this negatively impacted the quality of the records and patient safety when GPs avoided documenting speculations or concerns. Contrary to assumptions that 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 to 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. A table of potential unintended consequences and mitigation measures is provided to aid practice managers and clinicians implementing online access.

Using the recommended summary plan for emergency care and treatment (ReSPECT) in care homes: a qualitative interview study.

BACKGROUND: The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is an advance care planning process designed to facilitate discussion and documentation of preferences for care in a medical emergency. Advance care planning is important in residential and nursing homes. AIM: To explore the views and experiences of GPs and care home staff of the role of ReSPECT in: (i) supporting, and documenting, conversations about care home residents' preferences for emergency care situations, and (ii) supporting decision-making in clinical emergencies. SETTING/PARTICIPANTS: Sixteen GPs providing clinical care for care home residents and 11 care home staff in the West of England. METHODS: A qualitative research design using semi-structured interviews. RESULTS: Participants' accounts described the ReSPECT process as facilitating person-centred conversations about residents' preferences for care in emergency situations. The creation of personalised scenarios supported residents to consider their preferences. However, using ReSPECT was complex, requiring interactional work to identify and incorporate resident or relative preferences. Subsequent translation of preferences into action during emergency situations also proved difficult in some cases. Care staff played an important role in facilitating and supporting ReSPECT conversations and in translating it into action. CONCLUSIONS: The ReSPECT process in care homes was positive for GPs and care home staff. We highlight challenges with the process, communication of preferences in emergency situations and the importance of balancing detail with clarity. This study highlights the potential for a multi-disciplinary approach engaging care staff more in the process.

The experience of conducting collaborative and intensive pragmatic qualitative (CLIP-Q) research to support rapid public health and healthcare innovation.

A key challenge for qualitative methods in applied health research is the fast pace that can characterize the public health and health and care service landscape, where there is a need for research informed by immediate pragmatic questions and relevant findings are required quickly to inform decision-making. The COVID-19 pandemic accelerated the pace at which evidence was needed to inform urgent public health and healthcare decision-making. This required qualitative researchers to step up to the challenge of conducting research at speed whilst maintaining rigor and ensuring the findings are credible. This article illustrates how working with multidisciplinary, collaborative teams and the tailoring of qualitative methods to be more pragmatic and efficient can provide timely and credible results. Using time-limited case studies of applied qualitative health research drawn from the work of the Behavioral and Qualitative Science Team from the National Institute for Health and Care Research Applied Research Collaboration West (NIHR ARC West), we illustrate our collaborative and intensive pragmatic qualitative (CLIP-Q) approach. CLIP-Q involves (i) collaboration at all stages of the design, conduct and implementation of projects and, where possible, co-production with people with lived experience, (ii) an intensive team-based approach to data collection and analysis at pace, and (iii) pragmatic study design and efficient strategies at each stage of the research process. The case studies include projects conducted pre COVID-19 and during the first wave of the pandemic, where urgent evidence was required in weeks rather than months to inform rapid public health and healthcare decision making.

Unintended consequences of online consultations: a qualitative study in UK primary care.

BACKGROUND: Health services are increasingly using digital tools to deliver care, and online consultations are being widely adopted in primary care settings. The intended consequences of online consultations are to increase patient access to care and increase the efficiency of care. AIM: To identify and understand the unintended consequences of online consultations in primary care. DESIGN AND SETTING: Qualitative interview study in eight general practices using online consultation tools in South West and North West England between February 2019 and January 2020. METHOD: Thematic analysis of semi-structured interviews with 19 patients and 18 general practice staff. RESULTS: Consequences of online consultations were identified that restricted patient access to care by making it difficult for some patients to communicate effectively with a GP and disadvantaging digitally-excluded patients. This stemmed from patient uncertainty about how their queries were dealt with, and whether practices used online consultations as their preferred method for patients to contact the practice. Consequences were identified that limited increases in practice efficiency by creating additional work, isolation, and dissatisfaction for some staff. CONCLUSION: Unintended consequences often present operational challenges that are foreseeable and partly preventable. However, these challenges must be recognised and solutions resourced sufficiently. Not everyone may benefit and local decisions will need to be made about trade-offs. Process changes tailored to local circumstances are critical to making effective use of online consultation tools. Unintended consequences also present clinical challenges that result from asynchronous communication. Online consultation tools favour simple, well-formulated information exchange that leads to diffuse relationships and a more transactional style of medicine.

Doctor-patient communication about blood tests: Qualitative interview study in general practice.

Context: Shared decision making is widely advocated, however most research focuses on treatment decisions. Evidence for shared decision-making in relation to diagnostic testing is limited to specific tests such as prostate specific antigen, screening and genetic tests. There is a lack of evidence regarding the relevance of shared decision-making to routine blood tests, despite increasing rates of laboratory testing in primary care. Objectives: To explore shared decision making and communication around routine blood tests in primary care. Study design: Qualitative interview study Setting: UK primary care Population studied: Qualitative interviews were undertaken with patients at two time points: (a) at or soon after their blood test and (b) after they had received their test results. We also undertook interviews with the patients' GPs who requested the tests. This gave us paired data which enabled to us to examine areas of congruence and dissonance between GPs' and patients' expectations, experience and understanding of testing. A total of 80 interviews with 28 patients and 19 doctors were completed, reflecting a range of socioeconomic and demographic characteristics. Interviews were digitally recorded, transcribed and analyzed using thematic analysis using a mixture of inductive and deductive coding and constant comparison. Results: There were no examples of shared decision making identified in any of the interviews, indeed patients were frequently unaware of which blood tests had been done and why. Barriers to a shared understanding of blood testing were identified including the complexity and technical nature of information, a lack of resources for information sharing and a perception that blood tests were low priority for information sharing. Doctors perceived that a paternalistic approach to testing could be justified to protect patients from anxiety. Misunderstanding and a lack of communication around testing and test results led to uncertainty, anxiety and frustration for patients. Conclusions: The results have implications, not just for models of shared decision making, but more fundamentally, informed consent. Shared decision-making for diagnostic testing differs from treatment decisions. Promoting a shared understanding and shared decision-making could help rationalize testing, potentially reducing unnecessary investigations and improving patient-centered care.

The introduction of a safety checklist in two UK hospital emergency departments: A qualitative study of implementation and staff use.

AIMS AND OBJECTIVES: To explore the extent to which a checklist designed to support patient safety in hospital Emergency Departments was recognised and used by staff. BACKGROUND: Patient crowding in UK Emergency Departments makes it difficult for staff to monitor all patients for signs of clinical deterioration. An Emergency Department Safety Checklist was developed at a UK hospital to ensure patients are regularly monitored. It was subsequently implemented in six hospitals and recommended for use across the National Health Service in England. METHODS: This was a qualitative study in two UK hospital Emergency Departments. Data collection consisted of sixty-six hours of nonparticipant observation and interviews with twenty-six staff. Observations were sampled across different days and times. Interviews sampled a range of staff. Data were analysed thematically. The study was undertaken in accordance with COREQ guidelines. RESULTS: Staff described the Emergency Department Safety Checklist as a useful prompt and reminder for monitoring patients' vital signs and other aspects of care. It was also reported as effective in communicating patient care status to other staff. However, completing the checklist was also described as a task which could be overlooked during busy periods. During implementation, the checklist was promoted to staff in ways that obscured its core function of maintaining patient safety. CONCLUSIONS: The Emergency Department Safety Checklist can support staff in maintaining patient safety. However, it was not fully recognised by staff as a core component of everyday clinical practice. RELEVANCE TO CLINICAL PRACTICE: The Emergency Department Safety Checklist is a response to an overcrowded environment. To realise the potential of the checklist, emergency departments should take the following steps during implementation: (a) focus on the core function of clinical safety, (b) fully integrate the checklist into the existing workflow and (c) employ a departmental team-based approach to implementation and training.

Use of an electronic consultation system in primary care: a qualitative interview study.

BACKGROUND: The level of demand on primary care continues to increase. Electronic or e-consultations enable patients to consult their GP online and have been promoted as having potential to improve access and efficiency. AIM: To evaluate whether an e-consultation system improves the ability of practice staff to manage workload and access. DESIGN AND SETTING: A qualitative interview study in general practices in the West of England that piloted an e-consultation system for 15 months during 2015 and 2016. METHOD: Practices were purposefully sampled by location and level of e-consultation use. Clinical, administrative, and management staff were recruited at each practice. Interviews were transcribed and analysed thematically. RESULTS: Twenty-three interviews were carried out across six general practices. Routine e-consultations offered benefits for the practice because they could be completed without direct contact between GP and patient. However, most e-consultations resulted in GPs needing to follow up with a telephone or face-to-face appointment because the e-consultation did not contain sufficient information to inform clinical decision making. This was perceived as adding to the workload and providing some patients with an alternative route into the appointment system. Although this was seen as offering some patient benefit, there appeared to be fewer benefits for the practices. CONCLUSION: The experiences of the practices in this study demonstrate that the technology, in its current form, fell short of providing an effective platform for clinicians to consult with patients and did not justify their financial investment in the system. The study also highlights the challenges of remote consultations, which lack the facility for real time interactions.

The researchers' role in knowledge translation: a realist evaluation of the development and implementation of diagnostic pathways for cancer in two United Kingdom localities.

BACKGROUND: In examining an initiative to develop and implement new cancer diagnostic pathways in two English localities, this paper evaluates 'what works' and examines the role of researchers in facilitating knowledge translation amongst teams of local clinicians and policy-makers. METHODS: Using realist evaluation with a mixed methods case study approach, we conducted documentary analysis of meeting minutes and pathway iterations to map pathway development. We interviewed 14 participants to identify the contexts, mechanisms and outcomes (CMOs) that led to successful pathway development and implementation. Interviews were analysed thematically and four CMO configurations were developed. RESULTS: One site produced three fully implemented pathways, while the other produced two that were partly implemented. In explaining the differences, we found that a respected, independent, well-connected leader modelling partnership working and who facilitates a local, stable group that agree about the legitimacy of the data and project (context) can empower local teams to become sufficiently autonomous (mechanism) to develop and implement research-based pathways (outcome). Although both teams designed relevant, research-based cancer pathways, in the site where the pathways were successfully implemented the research team merely assisted, while, in the other, the research team drove the initiative. CONCLUSION: Based on our study findings, local stakeholders can apply local and research knowledge to develop and implement research-based pathways. However, success will depend on how academics empower local teams to create autonomy. Crucially, after re-packaging and translating research for local circumstances, identifying fertile environments with the right elements for implementation and developing collaborative relationships with local leaders, academics must step back.

Decision making and referral from primary care for possible lung and colorectal cancer: a qualitative study of patients' experiences.

BACKGROUND: The challenge for GPs when assessing whether to refer a patient for cancer investigation is that many cancer symptoms are also caused by benign self-limiting illness. UK National Institute for Health and Care Excellence (NICE) referral guidelines emphasise that the patient should be involved in the decision-making process and be informed of the reasons for referral. Research to date, however, has not examined the extent to which these guidelines are borne out in practice. AIM: To assess the degree to which patients are involved in the decision to be referred for investigation for symptoms associated with cancer and their understanding of the referral. DESIGN AND SETTING: Qualitative interview study of patients referred to secondary care for symptoms suspicious of lung and colorectal cancer. Patients were recruited from two regions of England using maximum variation sampling. METHOD: Transcribed interviews were analysed thematically. RESULTS: The analysis was based on 34 patient interviews. Patients in both symptom pathways reported little involvement in the decision to be referred for investigation. This tended to be accompanied by a patient expectation for referral, however, to explain ongoing and un-resolving symptoms. It was also found that reasons for referral tended to be couched in non-specific terms rather than cancer investigation, even when the patient was on a cancer-specific pathway. CONCLUSION: GPs should consider a more overt discussion with patients when referring them for further investigation of symptoms suspicious of cancer. This would align clinical practice with NICE guidelines and encourage more open discussion between GPs and primary care patients around cancer.

Changing eating behaviours to treat childhood obesity in the community using Mandolean: the Community Mandolean randomised controlled trial (ComMando)--a pilot study.

BACKGROUND: Around one in five children in England is obese when they leave primary school. Thus far, it has not been demonstrated that primary care interventions to manage childhood obesity can achieve significant weight reduction. Training obese children to eat more slowly as an adjunct to other healthy lifestyle behaviour change has been shown to increase weight reduction in a hospital setting. OBJECTIVES: This pilot study aimed to test recruitment strategies, treatment adherence, clinic attendance and participants' experiences of using a device [Mandolean® (previously Mandometer®, Mikrodidakt AB, Lund, Sweden)] to slow down speed of eating as an adjunct to dietary and activity advice in treating obesity in primary school-aged children. DESIGN: A two-arm, parallel, randomised controlled trial with a qualitative study embedded within the pilot. Randomisation occurred after informed consent and baseline measures were collected. Participants were randomised by the Bristol Randomised Trials Collaboration randomisation service with allocation stratified by hub and minimised by age of the child, gender, and baseline body mass index (BMI) standard deviation score (BMI z-value) of the child, and by BMI of the study parent (obese/not obese). SETTING: General practices across Bristol, North Somerset and South Gloucestershire primary care trusts. PARTICIPANTS: Children (BMI ≥ 95th percentile) aged 5-11 years and their families. INTERVENTION: Standard care comprised dietary and activity advice by trained practice nurses. Adjunctive Mandolean training (the intervention) educated participants to eat meals more slowly and to rate levels of fullness (satiety). Mandolean is a small computer device attached to a weighing scale that provides visual and oral feedback during meals while generating a visual representation of levels of satiety during the meal. Participants were encouraged to eat their main meal each day from the Mandolean. One parent was also given a Mandolean to use when eating with the child. OUTCOME MEASURES: Outcomes for the pilot were recruitment of 36 families to the trial in the 9-month pilot phase, that meals would be eaten at least five times a week off a Mandolean by 90% of patients randomised to the intervention arm, that 80% of patients in both arms would attend the weight management clinic appointment 3 months post randomisation and that > 60% of children using Mandolean would demonstrate a reduction in speed of eating from baseline within 3 months of randomisation. RESULTS: None of the criteria for progression to the main trial were reached. Despite numerous pathways being available for referral, only 21 (13 to standard care, eight to intervention arm; 58%) of the target 36 families were recruited in the pilot phase. Less than 20% of those randomised to Mandolean used the device at least five times a week. The > 60% target for slowing down of eating speed by 3 months was unmet. Attendance at the weight management clinic in general practice hubs for both arms of the study at 3 months was 44% against a target of 80%. CONCLUSIONS: This pilot trial failed to meet its objectives in terms of recruitment, treatment adherence, demonstration of a reduction in speed of eating in sufficient numbers of children, and attendance at follow-up appointments. Despite a high prevalence of childhood obesity in the geographical area and practices signing up for the trial, this study, like many others, demonstrates a failure of families to engage with and respond to primary care weight management interventions. We need to understand why the target population seems inured to the health message that childhood obesity is a significant health-care issue and identify the barriers to seeking help and then acting on positive health behaviour retraining. Only when we have fully understood the general public's perceptions of childhood obesity and have identified ways of engaging target populations can we hope to develop interventions that can work in a primary or community-based setting. TRIAL REGISTRATION: Current Controlled Trials ISRCTN90561114. FUNDING: This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 18, No. 47. See the NIHR Journals Library website for further project information.

Responding to symptoms suggestive of lung cancer: a qualitative interview study.

BACKGROUND: Late diagnosis of lung cancer can impact on survival rates. Patients delay seeking help for a number of reasons. This study explored symptom appraisal and help-seeking decisions among patients referred to specialist respiratory services with symptoms suggestive of lung cancer. METHODS: In-depth qualitative interviews with patients as soon as possible after referral, ideally before diagnosis and mainly within 10 weeks, explored factors impacting on their pathways prior to referral. Framework analysis, underpinned by the Model of Pathways to Treatment, was used to explore the data with particular focus on patients' beliefs and experiences, disease factors and healthcare professional influences. RESULTS: 35 patients were interviewed (aged 41-88 years, 15 women, 17 with lung cancer). All described similar presenting symptoms and triggers to seek help. Appraisal of symptoms was influenced by whether they had a lung comorbidity; seriousness of symptoms was interpreted within the context of previous illness experiences. Help-seeking was triggered when: symptoms failed to respond as expected; there was an increased awareness of symptoms of lung cancer; the public nature of a cough meant others were able to endorse help-seeking. Almost half visited the general practitioner (GP) two or more times before referral; during this period they reinterpreted initial symptoms and appraised new symptoms. The meaning given to symptoms changed over time and many became increasingly concerned they may have lung cancer. The GP played a role in ensuring timely further help-seeking but often there was little guidance on how to monitor symptoms or when to reconsult. CONCLUSIONS: Patients diagnosed with and without lung cancer had similar symptom pathways. Findings provide guidance for lung cancer awareness campaigns on the importance of social networks in endorsing patient help-seeking. The importance of appropriate advice, monitoring and safety-netting procedures by GPs for people presenting with symptoms suggestive of lung cancer is also highlighted.

If we ask, what they might tell: clinical assessment lessons from LGBT military personnel post-DADT.

Following repeal of the Don't Ask Don't Tell Policy, nearly one million lesbian, gay, and bisexual veterans and service members may increasingly seek access to Veterans Affairs services (G. Gates, 2004; G. J. Gates, 2010). Limited data exist regarding lesbian, gay, bisexual, transgender (LGBT) military personnel posing a unique challenge to clinicians and healthcare systems serving veterans with evidence-based and culturally relevant practice. In an effort to fill this information void, participatory program evaluation is used to inform recommendations for LGBT-affirmative health care systems change in a post-DADT world.

Improving access to primary care: eight case studies of introducing Advanced Access in England.

OBJECTIVE: To examine the implementation of 'Advanced Access' as a means of improving access to primary care. METHODS: Qualitative case studies of eight English general practices undertaken as part of a mixed method study. RESULTS: There was considerable variation in the interpretation and implementation of Advanced Access. Practices claiming to operate this system often did not follow its key principles. Differences between practice access systems centred on the use of 'same-day' appointments. The association of Advanced Access with same-day appointment systems was problematic as it both created antagonism to, and diverged from, the Advanced Access model. Practice staff did not necessarily share the conceptualisation of demand that underpinned Advanced Access. Other policies and targets provided further incentives to diverge from the model and these factors were compounded by informal organizational behaviours, notably the exercise of discretion, which led to adaptation. CONCLUSION: Advanced Access was diluted because it became confused with same-day appointment systems and other incentives and targets. Its guiding philosophy of 'manageable demand' appeared counter-intuitive to staff in the context of general practice, which made its implementation problematic. As a result, the system was adapted and modified.

Implementation of Advanced Access in general practice: postal survey of practices.

BACKGROUND: Advanced Access has been strongly promoted as a means of improving access to general practice. Key principles include measuring demand, matching capacity to demand, managing demand in different ways and having contingency plans. Although not advocated by Advanced Access, some practices have also restricted availability of pre-booked appointments. AIM: This study compares the strategies used to improve access by practices which do or do not operate Advanced Access. DESIGN OF STUDY: Postal survey of practices. SETTING: Three hundred and ninety-one practices in 12 primary care trusts. METHOD: Questionnaires were posted to practice managers to collect data on practice characteristics, supply and demand of appointments, strategies employed to manage demand, and use of Advanced Access. RESULTS: Two hundred and forty-five from 391 (63%) practices returned a questionnaire and 162/241(67%) claimed to be using Advanced Access. There were few differences between characteristics of practices operating Advanced Access or not. Both types of practice had introduced a wide range of measures to improve access. The proportion of doctors' appointments only available for booking on the same day was higher in Advanced Access practices (40 versus 16%, difference = 24%, 95% CI = 16% to 32%). Less than half the practices claiming to operate Advanced Access ((63/140; 45%) used all four of this model's key principles. CONCLUSION: The majority of practices in this sample claim to have introduced Advanced Access, but the degree of implementation is very variable. Advanced Access practices use more initiatives to measure and improve access than non-Advanced Access practices.

A novel suction electrode recording technique for monitoring circadian rhythms in single and multiunit discharge from brain slices.

The study of spontaneous neuronal discharge for several days in vitro poses substantial technical difficulties not readily addressed by existing methodologies. Here we describe a novel method for recording bioelectrical signals from brain slices, using media-filled, glass micropipettes stabilized at the recording interface by negative pressure. Such electrodes are durable, economical and easily constructed using standard laboratory equipment. Through these suction electrodes, we monitored approximately 24 h oscillations in spontaneous single and multiunit discharge from acutely prepared adult mouse suprachiasmatic nuclei (SCN) slices for up to 4 days in vitro, with very high success rates. Neuronal oscillations exhibited all the characteristics previously determined in SCN recordings using other techniques. Importantly, our electrode assembly enables SCN activity in acutely prepared brain slices to be monitored for substantially longer than with other methodologies. In summary, our data suggest that suction electrodes are likely to provide a favorable alternative to existing methods for recording long-term neuronal activity from brain slices.