The role of patients and carers in diffusing a health-care innovation: A case study of "My Medication Passport".

BACKGROUND: Patients are increasingly recognized as playing important roles in improving health services. Little is known about the mechanisms by which patients develop and diffuse local innovations in a complex health-care system. OBJECTIVE: To ascertain how diffusion of an innovation, My Medication Passport, occurred and roles played by patients in it. DESIGN: Case study: quantitative mapping of innovation's diffusion and analysis of the routes and occupations of those through whom the innovation spread; documentary analysis; reflective assessment of patient's roles. SETTING AND PARTICIPANTS: NHS Trusts, third sector organizations, patients and health-care professionals. INTERVENTIONS STUDIED: Co-produced action to raise awareness and influence use of the innovation; order database which enabled ease of access to the innovation. MAIN OUTCOME MEASURES: Geographical spread of innovation; occupations of individuals; types of organizations using the innovation. RESULTS: The innovation spread from initial development and use in Northwest London across the UK and beyond. Key roles played by patients were as follows: co-producer; advocate; relationship builder; relationship broker; planner; presenter; awareness raiser; trainer; networker. Patients identified and introduced potential audiences and users to MMP, using social, organizational, sectoral, lay and professional networks to do so. They organized a range of awareness-raising and communication activities, monitored feedback, evaluated the impact and responded to new interest. DISCUSSION AND CONCLUSIONS: The roles of patients in diffusing innovations are under-recognized. Collaborative working between patients, carers and health-care professionals in planning and progressing the use and supporting diffusion of the innovation was important. Principles described in this study are relevant to progressing other patient-led ideas for innovative changes relating to health service development.

Involving citizens in priority setting for public health research: Implementation in infection research.

BACKGROUND: Public sources fund the majority of UK infection research, but citizens currently have no formal role in resource allocation. To explore the feasibility and willingness of citizens to engage in strategic decision making, we developed and tested a practical tool to capture public priorities for research. METHOD: A scenario including six infection themes for funding was developed to assess citizen priorities for research funding. This was tested over two days at a university public festival. Votes were cast anonymously along with rationale for selection. The scenario was then implemented during a three-hour focus group exploring views on engagement in strategic decisions and in-depth evaluation of the tool. RESULTS: 188/491(38%) prioritized funding research into drug-resistant infections followed by emerging infections(18%). Results were similar between both days. Focus groups contained a total of 20 citizens with an equal gender split, range of ethnicities and ages ranging from 18 to >70 years. The tool was perceived as clear with participants able to make informed comparisons. Rationale for funding choices provided by voters and focus group participants are grouped into three major themes: (i) Information processing; (ii) Knowledge of the problem; (iii) Responsibility; and a unique theme within the focus groups (iv) The potential role of citizens in decision making. Divergent perceptions of relevance and confidence of "non-experts" as decision makers were expressed. CONCLUSION: Voting scenarios can be used to collect, en-masse, citizens' choices and rationale for research priorities. Ensuring adequate levels of citizen information and confidence is important to allow deployment in other formats.

What are the factors driving antimicrobial resistance? Perspectives from a public event in London, England.

BACKGROUND: Antimicrobial resistance is driven by multiple factors. Resolving the threat to human and animal health presented by drug-resistant infections remains a societal challenge that demands close collaboration between scientists and citizens. We compared current public views about key contributing factors to antimicrobial resistance with those expressed by experts. METHODS: Overarching factors contributing to antimicrobial resistance were identified following a review of literature. The factors were then described in plain language and attached to ballot boxes at a public engagement event organised by a university. Responses to each factor were counted at the end of the event. RESULTS: Four hundred five responses were received from 3750 visitors (11 % response rate). Nearly half of responses (192/405, 47 · 4 %) considered the misuse/overuse of antibiotics in humans as the main determinant of antimicrobial resistance. The misuse of antibiotics in animal health obtained 16 · 3 % (66/405) responses. However, the lack of quick tests to diagnose infections received 10/405 votes (2 · 47 %), and the lack of effective vaccines received one vote (0 · 25 %). CONCLUSIONS: The majority of responses ascribed the emergence of drug-resistant infections to the misuse of antibiotics in human and animals. Suboptimal dosing, availability of diagnostics and environmental contamination were considered less influential on the development of antimicrobial resistance. The growing recognition of broader multifaceted drivers of drug resistance by experts is not yet echoed in the public mind.

Collaborative and integrated working between general practice and community pharmacies: A realist review of what works, for whom, and in which contexts.

OBJECTIVES: Collaborative and integrated (C + I) working between general practice and community pharmacies has the potential to increase accessibility to services, improve service efficiency and quality of care, and reduce health care expenditures. Many existing studies report challenges and complexities inherent in establishing effective C + I ways of working. The aim of our review is to understand how, when and why working arrangements between General Practitioners (GP) and Community Pharmacists (CP) can provide the conditions necessary for effective communication, decision-making, and C + I working. METHODS: We conducted a realist review to explore the key contextual factors and mechanisms through which GP-CP C + I working may be achieved. MEDLINE, Embase, CINAHL, PsycINFO, HMIC, Web of Science, IBSS, ASSIA, Sociological Abstracts, Sociology Database and the King's Fund Library Database were searched for articles and grey literature published between January 2000 and April 2022. RESULTS: A total of 136 documents were included in the final synthesis. Our findings highlight the importance of mutually beneficial remuneration models to support effective integration of services; supportive organisational cultures and values; flexible and agile IT systems/technologies; adequate physical infrastructure and space design to support multidisciplinary teamworking; the importance of establishing patient's trust in collaborative processes between GP-CP; and the need to acknowledge, support and utilise effective triadic relationships. CONCLUSIONS: Our research generates new insights regarding how, why and in which contexts C + I working can be achieved between GPs and CPs. The findings of our review can be used to inform future policy, research and clinical practice guidelines for designing and delivering C + I care.

Community pharmacy and general practice collaborative and integrated working: a realist review protocol.

INTRODUCTION: Increasing collaborative and integrated working between General practice (GP) and Community pharmacy (CP) is a key priority of the UK National Health Service and has been proposed as a solution to reducing health system fragmentation, improving synergies and coordination of care. However, there is limited understanding regarding how and under which circumstances collaborative and integrated working between GP and CP can be achieved in practice and how regulatory, organisational and systemic barriers can be overcome. METHODS AND ANALYSIS: The aim of our review is to understand how, when and why working arrangements between GP and CP can provide the conditions necessary for optimal communication, decision-making, and collaborative and integrated working. A realist review approach will be used to synthesise the evidence to make sense of the complexities inherent in the working relationships between GP and CP. Our review will follow Pawson's five iterative stages: (1) finding existing theories; (2) searching for evidence (our main searches were conducted in April 2022); (3) article selection; (4) data extraction and (5) synthesising evidence and drawing conclusions. We will synthesise evidence from grey literature, qualitative, quantitative and mixed-methods research. The research team will work closely with key stakeholders and include patient and public involvement and engagement throughout the review process to refine the focus of the review and the programme theory. Collectively, our refined programme theory will explain how collaborative and integrated working between GP and CP works (or not), for whom, how and under which circumstances. ETHICS AND DISSEMINATION: Formal ethical approval is not required for this review as it draws on secondary data from published articles and grey literature. Findings will be widely disseminated through: publication in peer-reviewed journals, seminars, international conference presentations, patients' association channels, social media, symposia and user-friendly summaries. PROSPERO REGISTRATION NUMBER: CRD42022314280.

How can patient-held lists of medication enhance patient safety? A mixed-methods study with a focus on user experience.

BACKGROUND: Patients often carry medication lists to mitigate information loss across healthcare settings. We aimed to identify mechanisms by which these lists could be used to support safety, key supporting features, and barriers and facilitators to their use. METHODS: We used a mixed-methods design comprising two focus groups with patients and carers, 16 semistructured interviews with healthcare professionals, 60 semistructured interviews with people carrying medication lists, a quantitative features analysis of tools available for patients to record their medicines and usability testing of four tools. Findings were triangulated using thematic analysis. Distributed cognition for teamwork models were used as sensitising concepts. RESULTS: We identified a wide range of mechanisms through which carrying medication lists can improve medication safety. These included improving the accuracy of medicines reconciliation, allowing identification of potential drug interactions, facilitating communication about medicines, acting as an aide-mémoire to patients during appointments, allowing patients to check their medicines for errors and reminding patients to take and reorder their medicines. Different tools for recording medicines met different needs. Of 103 tools examined, none met the core needs of all users. A key barrier to use was lack of awareness by patients and carers that healthcare information systems can be fragmented, a key facilitator was encouragement from healthcare professionals. CONCLUSION: Our findings suggest that patients and healthcare professionals perceive patient-held medication lists to have a wide variety of benefits. Interventions are needed to raise awareness of the potential role of these lists in enhancing patient safety. Such interventions should empower patients and carers to identify a method that suits them best from a range of options and avoid a 'one size fits all' approach.

Comments on: involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement.

PLAIN ENGLISH SUMMARY: Some previous researchers (Locock et al) have written about what may be the best way for public contributors to be involved in data analysis in research projects. Their experience has been that giving public contributors large amounts of text to read is not the best use of their time and experience. They have recommended that a better approach would be for a researcher to meet with a group of users at the start of analysis, to discuss what to look out for. However, as another patient group that has been involved in analysis, we think differently. The approach we used was to be more fully involved in the project over a longer time period. Analysis tasks were broken down into stages to make it easier for those taking part. We found that this allowed us to take part fully without placing too much burden on us. We found that our approach was workable and successful and see no reason why it could not be applied in other circumstances. ABSTRACT: In this journal, Locock et al. have suggested that service users should not be overburdened with large amounts of data, and that eliciting users' reflections on their experience at the start of analysis and using this as a guide to direct researcher attention during the remainder of the process may work better. As public contributors that have been involved in analysis we suggest an alternative approach in this brief letter, based on our own experiences.

What matters to medical ward patients, and do we measure it? A qualitative comparison of patient priorities and current practice in quality measurement, on UK NHS medical wards.

OBJECTIVES: To compare the quality metrics selected for public display on medical wards to patients' and carers' expressed quality priorities. METHODS: Multimodal qualitative evaluation of general medical wards and semi-structured interviews. SETTING: UK tertiary National Health Service (public) hospital. PARTICIPANTS: Fourteen patients and carers on acute medical wards and geriatric wards. RESULTS: Quality metrics on public display evaluated hand hygiene, hospital-acquired infections, nurse staffing, pressure ulcers, falls and patient feedback. The intended audience for these metrics was unclear, and the displays gave no indication as to whether performance was improving or worsening. Interviews identified three perceived key components of high-quality ward care: communication, staff attitudes and hygiene. These aligned poorly with the priorities on display. Suboptimal performance reporting had the potential to reduce patients' trust in their medical teams. More philosophically, patients' and carers' ongoing experiences of care would override any other evaluation, and they felt little need for measures relating to previous performance. The display of performance reports only served to emphasise patients' and carers' lack of control in this inpatient setting. CONCLUSIONS: There is a gap between general medical inpatients' care priorities and the aspects of care that are publicly reported. Patients and carers do not act as 'informed choosers' of healthcare in the inpatient setting, and tokenistic quality measurement may have unintended consequences.

Distributed Cognition: Understanding Complex Sociotechnical Informatics.

Distributed cognition theory posits that our cognitive tasks are so tightly coupled to the environment that cognition extends into the environment, beyond the skin and the skull. It uses cognitive concepts to describe information processing across external representations, social networks and across different periods of time. Distributed cognition lends itself to exploring how people interact with technology in the workplace, issues to do with communication and coordination, how people's thinking extends into the environment and sociotechnical system architecture and performance more broadly. We provide an overview of early work that established distributed cognition theory, describe more recent work that facilitates its application, and outline how this theory has been used in health informatics. We present two use cases to show how distributed cognition can be used at the formative and summative stages of a project life cycle. In both cases, key determinants that influence performance of the sociotechnical system and/or the technology are identified. We argue that distributed cognition theory can have descriptive, rhetorical, inferential and application power. For evidence-based health informatics it can lead to design changes and hypotheses that can be tested.

Use of patient-held information about medication (PHIMed) to support medicines optimisation: protocol for a mixed-methods descriptive study.

INTRODUCTION: Risks of poor information transfer across health settings are well documented, particularly for medication. There is also increasing awareness of the importance of greater patient activation. Patients may use various types of patient-held information about medication (PHIMed) to facilitate medication transfer, which may be paper or electronic. However, it is not known how PHIMed should best be used, whether it improves patient outcomes, nor is its key 'active ingredients' known. Discussion with patients and carers has highlighted this as a priority for research. We aim to identify how PHIMed is used in practice, barriers and facilitators to its use and key features of PHIMed that support medicines optimisation in practice. METHODS AND ANALYSIS: This study will take place in Greater London, England. We will include patients with long-term conditions, carers and healthcare professionals. The study has four work packages (WPs). WP1 involves qualitative interviews with healthcare professionals (n=16) and focus groups with patients and carers (n=20), including users and non-users of PHIMed, to study perceptions around its role, key features, barriers and facilitators, and any unintended consequences. WP2 will involve documentary analysis of how PHIMed is used, what is documented and read, and by whom, in a stratified sample of 60 PHIMed users. In WP3, we will carry out a descriptive analysis of PHIMed tools used/available, both electronic and paper, and categorise their design and key features based on those identified in WP1/2. Finally, in WP4, findings from WPs 1-3 will be integrated and analysed using distributed cognition as a theoretical framework to explore how information is recorded, transformed and propagated among different people and artefacts. ETHICS AND DISSEMINATION: The study has National Health Service ethics approval. It will provide initial recommendations around the present use of PHIMed to optimise patient care for patients, carers and healthcare professionals.

Development of a patient-centred intervention to improve knowledge and understanding of antibiotic therapy in secondary care.

Background: We developed a personalised antimicrobial information module co-designed with patients. This study aimed to evaluate the potential impact of this patient-centred intervention on short-term knowledge and understanding of antimicrobial therapy in secondary care. Methods: Thirty previous patients who had received antibiotics in hospital within 12 months were recruited to co-design an intervention to promote patient engagement with infection management. Two workshops, containing five focus-groups were held. These were audio-recorded. Data were analysed using a thematic framework developed deductively based on previous work. Line-by-line coding was performed with new themes added to the framework by two researchers. This was used to inform the development of a patient information module, embedded within an electronic decision support tool (CDSS).The intervention was piloted over a four-week period at Imperial College Healthcare NHS Trust on 30 in-patients. Pre- and post-intervention questionnaires were developed and implemented to assess short term changes in patient knowledge and understanding and provide feedback on the intervention. Data were analysed using SPSS and NVIVO software. Results: Within the workshops, there was consistency in identified themes. The participants agreed upon and co-designed a personalised PDF document that could be integrated into an electronic CDSS to be used by healthcare professionals at the point-of-care. Their aim for the tool was to provide individualised practical information, signpost to reputable information sources, and enhance communication between patients and healthcare professionals.Eighteen out of thirty in-patients consented to participant in the pilot evaluation with 15/18(83%) completing the study. Median (range) age was 66(22-85) years. The majority were male (10/15;66%). Pre-intervention, patients reported desiring further information regarding their infections and antibiotic therapy, including side effects of treatment. Deployment of the intervention improved short term knowledge and understanding of individuals infections and antibiotic management with median (IQR) scores improving from 3(2-5)/13 to 10(6-11)/13. 13/15(87%) reported that they would use the intervention again. Conclusion: A personalised, patient-centred intervention improved understanding and short-term knowledge of infections and antibiotic therapy in participating patients'. Long term impact on attitudes and behaviours post discharge will be further investigated.

The Role of Hospital Inpatients in Supporting Medication Safety: A Qualitative Study.

BACKGROUND: Inpatient medication errors are a significant concern. An approach not yet widely studied is to facilitate greater involvement of inpatients with their medication. At the same time, electronic prescribing is becoming increasingly prevalent in the hospital setting. In this study we aimed to explore hospital inpatients' involvement with medication safety-related behaviours, facilitators and barriers to this involvement, and the impact of electronic prescribing. METHODS: We conducted ethnographic observations and interviews in two UK hospital organisations, one with established electronic prescribing and one that changed from paper to electronic prescribing during our study. Researchers and lay volunteers observed nurses' medication administration rounds, pharmacists' ward rounds, doctor-led ward rounds and drug history taking. We also conducted interviews with healthcare professionals, patients and carers. Interviews were audio-recorded and transcribed. Observation notes and transcripts were coded thematically. RESULTS: Paper or electronic medication records were shown to patients in only 4 (2%) of 247 cases. However, where they were available during patient-healthcare professional interactions, healthcare professionals often viewed them in order to inform patients about their medicines and answer any questions. Interprofessional discussions about medicines seemed more likely to happen in front of the patient where paper or electronic drug charts were available near the bedside. Patients and carers had more access to paper-based drug charts than electronic equivalents. However, interviews and observations suggest there are potentially more significant factors that affect patient involvement with their inpatient medication. These include patient and healthcare professional beliefs concerning patient involvement, the way in which healthcare professionals operate as a team, and the underlying culture. CONCLUSION: Patients appear to have more access to paper-based records than electronic equivalents. However, to develop interventions to increase patient involvement with medication safety behaviours, a wider range of factors needs to be considered.

An Evidence-Based Antimicrobial Stewardship Smartphone App for Hospital Outpatients: Survey-based Needs Assessment Among Patients.

BACKGROUND: Current advances in modern technology have enabled the development and utilization of electronic medical software apps for both mobile and desktop computing devices. A range of apps on a large variety of clinical conditions for patients and the public are available, but very few target antimicrobials or infections. OBJECTIVE: We sought to explore the use of different antimicrobial information resources with a focus on electronic platforms, including apps for portable devices, by outpatients at two large, geographically distinct National Health Service (NHS) teaching hospital trusts in England. We wanted to determine whether there is demand for an evidence-based app for patients, to garner their perceptions around infections/antimicrobial prescribing, and to describe patients' experiences of their interactions with health care professionals in relation to this topic. METHODS: A cross-sectional survey design was used to investigate aspects of antimicrobial prescribing and electronic devices experienced by patients at four hospitals in London and a teaching hospital in the East of England. RESULTS: A total of 99 surveys were completed and analyzed. A total of 82% (80/98) of respondents had recently been prescribed antimicrobials; 87% (85/98) of respondents were prescribed an antimicrobial by a hospital doctor or through their general practitioner (GP) in primary care. Respondents wanted information on the etiology (42/65, 65%) and prevention and/or management (32/65, 49%) of their infections, with the infections reported being upper and lower respiratory tract, urinary tract, oral, and skin and soft tissue infections. All patients (92/92, 100%) desired specific information on the antimicrobial prescribed. Approximately half (52/95, 55%) stated it was "fine" for doctors to use a mobile phone/tablet computer during the consultation while 13% (12/95) did not support the idea of doctors accessing health care information in this way. Although only 30% (27/89) of respondents reported on the use of health care apps, 95% (81/85) offered information regarding aspects of antimicrobials or infections that could be provided through a tailored app for patients. Analysis of the comments revealed the following main global themes: knowledge, technology, and patient experience. CONCLUSIONS: The majority of respondents in our study wanted to have specific etiological and/or infection management advice. All required antimicrobial-related information. Also, most supported the use of electronic resources of information, including apps, by their doctors. While a minority of people currently use health apps, many feel that apps could be used to provide additional support/information related to infections and appropriate use of antimicrobials. In addition, we found that there is a need for health care professionals to engage with patients and help address common misconceptions around the generation of antimicrobial resistance.