Search

Transnational companies have substantive impacts on nature: a hallmark of living in the Anthropocene. Understanding these impacts through company provision of information is a precursor to holding them accountable for nature outcomes. The effect of increasing disclosures (of varying quality) is predicated on 'information governance', an approach that uses disclosure requirements to drive company behaviour. However, its efficacy is not guaranteed. We argue that three conditions are required before disclosures have the possibility to shape nature outcomes, namely: (1) radical traceability that links company actions to outcomes in particular settings; (2) developing organizational routines, tools and approaches that translate strategic intent to on-the-ground behaviour; and (3) mobilizing and aligning financial actors with corporate nature ambitions. While disclosure is key to each of these conditions, its limits must be taken into account and it must be nested in governance approaches that shape action, not just reporting. This article is part of the theme issue 'Bringing nature into decision-making'.

Challenges in health data interoperability have highlighted overall health care system inefficiencies. Many organizations struggle to establish a robust data governance infrastructure to meet the increasing demands of advanced data uses, let alone sharing it with a large number of other organizations. There is a need for health care organizations to adopt information governance frameworks that encapsulates interoperability as a core attribute as this can improve data processing, knowledge translation and participation in the larger health data ecosystem. To establish interoperability between healthcare organizations, standards must exist in relation to how information is governed and circulates in the healthcare system, not just on how it is structured, stored and used within an organization. In this paper we demonstrate that interoperability between organizations cannot coherently exist without consideration of information governance within organizations. Lack of coherence can lead to lack of data accessibility, decreased organizational efficiencies, and poor data quality. With this in mind, we propose a unified framework that integrates the principles of both information and interoperability governance to increase the adaptability, flexibility, and efficiency of health information usage across the entire healthcare system.

Promoting online peer support beyond the informal sector to statutory health services requires ethical considerations and evidence-based knowledge about its impact on patients, health care professionals, and the wider health care system. Evidence on the effectiveness of digital interventions in primary care is sparse, and definitive guidance is lacking on the ethical concerns arising from the use of social media as a means for health-related interventions and research. Existing literature examining ethical issues with digital interventions in health care mainly focuses on apps, electronic health records, wearables, and telephone or video consultations, without necessarily covering digital social interventions, and does not always account for primary care settings specifically. Here we address the ethical and information governance aspects of undertaking research on the promotion of online peer support to patients by primary care clinicians, related to medical and public health ethics., (©Georgios Dimitrios Karampatakis, Helen E Wood, Chris J Griffiths, Nathan C Lea, Richard E Ashcroft, Bill Day, Neil Walker, Neil S Coulson, Anna De Simoni. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 27.09.2023.)

As nodes in Social Internet of Things (SIoT) become more intelligent, malicious information occurs more frequently and spreads more widely. This problem can severely affect the trustworthiness of services and applications in SIoT. Methods to effectively control malicious information spreading in SIoT are essential and necessary. Reputation mechanism provides a powerful tool to tackle this challenge. In this paper, we propose a reputation-based mechanism to activate the self-purification capacity of the SIoT network by balancing information conflicts triggered by reporters and supporters. In order to find the best rewarding and punishment strategy, a bilateral cumulative-prospect-based evolutionary game model of SIoT network information conflict is constructed. Using local stability analysis and numerical simulation, the evolutionary trends of the proposed game model under different theoretical application scenarios are analyzed. The findings indicate that the basic income and deposit of both sides, the popularity of information as well as the importance of the conformity effect all have a significant impact on the system's steady state and evolutionary path. The specific conditions that both participating sides of the game tend to treat conflicts relatively rationally are analyzed. Dynamic evolution analysis and sensitivity analysis of selected parameters show that basic income is positively related to smart object's feedback strategies, while deposit is negatively related to that. While weight of conformity effect or the information popularity goes up, the rising of feedback probability is observed. Based on the above results, suggestions on dynamic reward and punishment strategies are given. The proposed model is a helpful attempt to model the evolution of information spreading in SIoT networks, with the ability to simulate several well-known regularities of message dissemination. Proposed model and suggested quantitative strategies can be helpful to build feasible malicious information control facilities in SIoT networks., Competing Interests: The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (© 2023 The Authors.)

Introduction: The global pandemic caused by novel Severe Acute Respiratory Syndrome Coronavirus-2 (SARS-CoV-2) has led to an unprecedented demand on critical care resources. The United Kingdom experienced its 'first wave' of Coronavirus-19 (Covid-19) disease in Spring 2020. Critical care units had to make major changes to their working practices in a short space of time and faced multiple challenges in doing so, including the challenge of caring for patients in multiple organ failure secondary to Covid-19 infection in the absence of an established evidence base of best practice. We undertook a qualitative investigation of the personal and professional challenges faced by critical care consultants in one Scottish health board in acquiring and evaluating information to guide clinical decision making during the first wave of the SARS-CoV-2 pandemic., Methods: Critical care consultants in NHS Lothian working in critical care from March to May 2020 were eligible to participate in the study. Participants were invited to take part in a one-to-one semi structured interview conducted using Microsoft Teams videoconferencing software. Reflexive thematic analysis was used as the method for data analysis using qualitative research methodology informed by a subtle realist position., Results: Analysis of the interview data generated the following themes: The Knowledge Gap; Trust in Information; and Implications for Practice. Illustrative quotes are presented in the text and thematic tables., Discussion: This study explored the experiences of critical care consultant physicians in acquiring and evaluating information to guide clinical decision making during the first wave of the SARS CoV2 pandemic. This study revealed that clinicians were profoundly affected by the pandemic and the ways in which it changed how they could access information to guide clinical decision making. The paucity of reliable information on SARS-CoV-2 posed a significant threat to the clinical confidence of participants. Two strategies were adopted to ease mounting pressures - an organised approach to data collection and the establishment of a local community of collaborative decision-making. These findings contribute to the wider literature by describing health care professionals' experiences in unprecedented times and could inform recommendations for future clinical practice. This could include governance around responsible information sharing in professional instant messaging groups, and medical journal guidelines on suspension of usual peer review and other quality assurance processes during pandemics., Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Intensive Care Society 2022.)

Background: There has been an increasing interest in the use of "real-world" data to inform care decision making that could lead to public health benefit. Routinely collected service and activity data associated with the administration of care services and service-users (such as electronic health records or electronic social care records), hold potential to better inform effective and responsive decision-making about health and care services provided to national and local populations. This study sought to gain an in-depth understanding regarding the potential to unlock real world data that was held in individual organisations, to better inform public health decision-making. This included sharing data between and within health service providers and local governing authorities, but also with university researchers to inform the evidence base., Methods: We used qualitative methods and carried out a series of online workshops and interviews with stakeholders (senior-level decision-makers and service leads, researchers, data analysts, those with a legal and governance role, and members of the public). We identified recurring themes in initial workshops, and explored these with participants in subsequent workshops. By this iterative process we further refined the themes identified, compared views and perceptions amongst different stakeholder groups, and developed recommendations for action., Results: Our study identified key elements of context and timing, the need for a different approach, and obstacles including governmental and legal, organisational features, and process factors which adversely affect the sharing of real world data. The findings also highlighted a need for improved communication about data for secondary uses to members of the public., Conclusion: The Covid-19 pandemic context and changes to organisational structures in the health service in England have provided opportunities to address data sharing challenges. Change at national and local level is required, within current job roles and generating new jobs roles focused on the use and sharing of real-world data. The study suggests that actions can be taken to unlock the potential of real-world data for public health benefit, and provides a series of recommendations at a national level, for organisational leaders, those in data roles and those in public engagement roles., (© 2023. The Author(s).)

COVID-19 has swept through the world, challenging countries' ability to respond to crises and their public governance. One of the difficulties of public governance in China is the knowledge gap caused by the urban-rural dual structure. This study takes anti-epidemic slogans in China, a traditional means of information governance as its research object in the context of COVID-19. Independent sample tests and cluster analysis were conducted to measure the knowledge gap between urban and rural residents in acquiring epidemic information, and compare the different slogans posted in urban and rural areas, as well as the feedback they received. Based on this, the study explores the different logic of urban and rural governance in China. The results show that, although slogans cannot convey the latest information, they can make the public aware of the severity of the epidemic. Urban residents were found to give lower evaluations to slogans, although they acknowledged that slogans had the effect of rendering an anti-epidemic atmosphere, whereas rural residents were more accepting of rude and threatening slogans and control measures. Slogans with scientific guidance were more likely to trigger changes in their awareness and behavior. The study is significant as it can be a reference for other regions' and countries' publicity work and governance approaches in the prevention and control of infectious diseases., Competing Interests: None., (© 2022 Elsevier Ltd. All rights reserved.)

When taking advantage of technology, healthcare is often met with considerably more barriers to entry than business. Cloud platforms can offer great benefits such as scalability, reduced cost and the ability to effortlessly collaborate across services, and indeed, across the world [6] yet healthcare has been slow to take advantage of these gains. This paper explores the challenges faced by healthcare, how using synthetic data can avoid the initial information governance barriers, provide the experience to effectively evaluate cloud platforms, enable effective research collaboration with education and industry, and support the digital transformation journey.

Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

CamCOPS is a free, open-source client-server system for secure data capture in the domain of psychiatry, psychology, and the clinical neurosciences. The client is a cross-platform C++ application, suitable for mobile and offline (disconnected) use. It allows touchscreen data entry by subjects/patients, researchers/clinicians, or both together. It implements a large and extensible range of tasks, from simple questionnaires to complex animated tasks. The client uses encrypted data storage and sends data via an encrypted network connection to a CamCOPS server. Individual institutional users set up and run their own CamCOPS server, so no data is transferred outside the hosting institution's control. The server, written in Python, provides clinically oriented and research-oriented views of tasks, including the tracking of changes over time. It provides an audit trail, export facilities (such as to an institution's primary electronic health record system), and full structured data access subject to authorization. A single CamCOPS server can support multiple research/clinical groups, each having its own identity policy (e.g., fully identifiable for clinical use; de-identified/pseudonymised for research use). Intellectual property rules regarding third-party tasks vary and CamCOPS has several mechanisms to support compliance, including for tasks that may be permitted to some institutions but not others. CamCOPS supports task scheduling and home testing via a simplified user interface. We describe the software, report local information governance approvals within part of the UK National Health Service, and describe illustrative clinical and research uses., Competing Interests: RC consults for Campden Instruments Ltd., in the area of research software and receives royalties from Cambridge University Press, Cambridge Enterprise, and Routledge. The remaining author declares that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2021 Cardinal and Burchell.)

Introduction The ongoing coronavirus disease 2019 (COVID-19) pandemic has impacted all aspects of clinical practice. A district general hospital's surgical department identified that ward rounds based on a paper-based handover system did not adhere to good COVID-19 pandemic infection control measures, including social distancing, reduction of footfall, and reducing contact events during documentation. Surgical E-Handover was introduced as a quality improvement project focussing on increasing efficiency and improving patient safety and compliance with COVID-19 social distancing measures. Other objectives were to reduce the risk of information governance breaches. During the COVID pandemic, there was a significant investment in digital technology, which supported rapid advancement in the use of electronic healthcare solutions to deliver new ways of working. We used the opportunity of the emergency situation to disrupt existing work patterns and introduce surgical E-Handover. Methods A quality improvement team of stakeholders was assembled, and a project to introduce E-Handover was carried out using the trust quality improvement methodology aligned to the Institute of Healthcare Improvement (IHI). Questionnaires were sent out pre- and post-implementation to evaluate the impact of using E-Handover during ward rounds. Results The efficiency of ward rounds was improved and improving compliance with COVID 19 social distancing measures was highly successful. These outcomes were achieved by reducing footfall during ward rounds, as key clinical information was available at the bedside (p<0.001). Doctors spent less time in crowded clinical multi-disciplinary team (MDT) rooms, and the integrated paper healthcare records were not accessed by multiple staff members simultaneously. The implementation of the E-Handover improved the safety and efficiency of the surgical department, particularly with reference to potential information governance breaches (p<0.001). Conclusion Surgical E-Handover, as compared to a printed patient list, significantly improved clinical efficiency and adherence to COVID-19 social distancing measures. E-Handover should be routinely used in surgical ward rounds., Competing Interests: The authors have declared that no competing interests exist., (Copyright © 2021, Jacob et al.)

This article provides a conceptual and normative framework through which we may understand the potentially ethically significant roles that information generated by neurotechnologies about our brains and minds may play in our construction of our identities. Neuroethics debates currently focus disproportionately on the ways that third parties may (ab)use these kinds of information. These debates occlude interests we may have in whether and how we ourselves encounter information about our own brains and minds. This gap is not yet adequately addressed by most allusions in the literature to potential identity impacts. These lack the requisite conceptual or normative foundations to explain why we should be concerned about such effects or how they might be addressed. This article seeks to fill this gap by presenting a normative account of identity as constituted by embodied self-narratives. It proposes that information generated by neurotechnologies can play significant content-supplying and interpretive roles in our construction of our self-narratives. It argues, to the extent that these roles support and detract from the coherence and inhabitability of these narratives, access to information about our brains and minds engages non-trivial identity-related interests. These claims are illustrated using examples drawn from empirical literature reporting reactions to information generated by implantable predictive BCIs and psychiatric neuroimaging. The article concludes by highlighting ways in which information generated by neurotechnologies might be governed so as to protect information subjects' interests in developing and inhabiting their own identities., Competing Interests: Conflict of InterestNot applicable., (© The Author(s) 2020.)

Background: Smart home and telemonitoring technologies have often been suggested to assist health care workers in supporting older people to age in place. However, there is limited research examining diverse information needs of different groups of health care workers and their access to appropriate information technologies., Objective: The aim of this study was to investigate the issues associated with using technologies that connect older people to their health care providers to support aging in place and enhance older people's health and well-being., Methods: Seven focus group discussions were conducted comprising 44 health care professionals who provided clinic-based or in-home services to community-dwelling older people. Participants were asked about their information needs and how technology could help them support older people to age in place. The recordings of the sessions were transcribed and thematically analyzed., Results: The perspectives varied between the respondents who worked in primary care clinics and those who worked in community-based services. Three overarching themes were identified. The first theme was "access to technology and systems," which examined the different levels of technology in use and the problems that various groups of health care professionals had in accessing information about their patients. Primary care professionals had access to good internal information systems but they experienced poor integration with other health care providers. The community-based teams had poor access to technology. The second theme was "collecting and sharing of information," which focused on how technology might be used to provide them with more information about their patients. Primary care teams were interested in telemonitoring for specific clinical indicators but they wanted the information to be preprocessed. Community-based teams were more concerned about gaining information on the patients' social environment. The third theme was that all respondents identified similar "barriers to uptake": cost and funding issues, usability of systems by older people, and information security and privacy concerns., Conclusions: The participants perceived the potential benefits of technologies, but they were concerned that the information they received should be preprocessed and integrated with current information systems and tailored to the older people's unique and changing situations. Several management and governance issues were identified, which needed to be resolved to enable the widespread integration of these technologies into the health care system. The disconnected nature of the current information architecture means that there is no clear way for sensor data from telemonitoring and smart home devices to be integrated with other patient information. Furthermore, cost, privacy, security, and usability barriers also need to be resolved. This study highlights the importance and the complexity of management and governance of systems to collect and disseminate such information. Further research into the requirements of all stakeholder groups and how the information can be processed and disseminated is required., (©Inga Hunter, Phoebe Elers, Caroline Lockhart, Hans Guesgen, Amardeep Singh, Dick Whiddett. Originally published in JMIR mHealth and uHealth (http://mhealth.jmir.org), 02.12.2020.)

With regard to the importance of health Information Governance (IG) programs in improving the quality and reducing the cost of healthcare services and the lack of a coherent health IG program in Iran's health system, this study aimed to develop a model for national health information governance program in Iran. The present research was an applied, cross-sectional descriptive study that was done in three steps, including literature review, development of a model for national health IG program in Iran, and model validation. In the third step, we used a questioner to validate the model through the Delphi method. Data analysis was done by descriptive statistics. The model for the national IG program in Iran was developed in 3 main sections consisting of 13 components, 12 principles, natural and judicial authorities of the health IG program, and their job description. Findings from the validation of the initial model showed that most experts (93%) confirmed the components and sub-components, principles, and natural and legal bodies supervising the national health IG program and their job description in the proposed model. Considering the structure of the Iranian health system, it was recommended to establish a health IG council in the Ministry of Health and Medical Education in order to develop guidelines and give advice to health care providers. Based on the proposed model, directors and staff of different departments of health care centers, especially those involved in health IG, are also responsible for the better implementation of the national health IG program., (©Carol Davila University Press.)

Competing Interests: Competing interests: None declared.

The interrogation of established, large-scale datasets presents great opportunities in health data science for the linkage and mining of potentially disparate resources to create new knowledge in a fast and cost-efficient manner. The number of datasets that can be queried in the field of multimorbidity is vast, ranging from national administrative and audit datasets, large clinical, technical and biological cohorts, through to more bespoke data collections made available by individual organisations and laboratories. However, with these opportunities also come technical and regulatory challenges that require an informed approach. In this review, we outline the potential benefits of using previously collected data as a vehicle for research activity. We illustrate the added value of combining potentially disparate datasets to find answers to novel questions in the field. We focus on the legal, governance and logistical considerations required to hold and analyse data acquired from disparate sources and outline some of the solutions to these challenges. We discuss the infrastructure resources required and the essential considerations in data curation and informatics management, and briefly discuss some of the analysis approaches currently used., (Copyright © 2020 Elsevier B.V. All rights reserved.)

Background: Clinical free-text data (eg, outpatient letters or nursing notes) represent a vast, untapped source of rich information that, if more accessible for research, would clarify and supplement information coded in structured data fields. Data usually need to be deidentified or anonymized before they can be reused for research, but there is a lack of established guidelines to govern effective deidentification and use of free-text information and avoid damaging data utility as a by-product., Objective: This study aimed to develop recommendations for the creation of data governance standards to integrate with existing frameworks for personal data use, to enable free-text data to be used safely for research for patient and public benefit., Methods: We outlined data protection legislation and regulations relating to the United Kingdom for context and conducted a rapid literature review and UK-based case studies to explore data governance models used in working with free-text data. We also engaged with stakeholders, including text-mining researchers and the general public, to explore perceived barriers and solutions in working with clinical free-text., Results: We proposed a set of recommendations, including the need for authoritative guidance on data governance for the reuse of free-text data, to ensure public transparency in data flows and uses, to treat deidentified free-text data as potentially identifiable with use limited to accredited data safe havens, and to commit to a culture of continuous improvement to understand the relationships between the efficacy of deidentification and reidentification risks, so this can be communicated to all stakeholders., Conclusions: By drawing together the findings of a combination of activities, we present a position paper to contribute to the development of data governance standards for the reuse of clinical free-text data for secondary purposes. While working in accordance with existing data governance frameworks, there is a need for further work to take forward the recommendations we have proposed, with commitment and investment, to assure and expand the safe reuse of clinical free-text data for public benefit., (©Kerina H Jones, Elizabeth M Ford, Nathan Lea, Lucy J Griffiths, Lamiece Hassan, Sharon Heys, Emma Squires, Goran Nenadic. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 29.06.2020.)

TEDIS, an information system dedicated to patients affected with neuro-developmental disorders including autism, focuses on patient data generated during in-depth clinical assessment in nine expert centers in Ile-de-France region. Long term partnership involving methodologists and domain experts is necessary to support quality data production and analyses and to guarantee quality data and information governance in a domain characterized by frequent evolutions in clinical assessment instruments and in diagnostic criteria and classification.

Clinical photographs aid decision-making and represent important medicolegal records. Storage and transfer of images of the facial area must adhere to Caldicott Principles. Outside working hours, clinical photography services are often limited. Our Trust has introduced a Secure Clinical Image Transfer (SCIT) app allowing clinicians to take photographs on personal devices to be securely uploaded to the patient's electronic health record. To evaluate whether clinicians were taking clinical images in an insecure manner, clinicians completed an anonymous questionnaire before and after introduction of the SCIT app. The standard was 100% knowledge of, and adherence to, trust information governance guidelines. Response rate was 100% in both cycles. Introduction of the SCIT app reduced inappropriate clinical photography on personal devices. Our completed audit cycle shows that the SCIT app allows convenient, secure information capture on personal devices and automatic secure synchronisation to trust electronic health records., (Copyright © 2020 The British Association of Oral and Maxillofacial Surgeons. Published by Elsevier Ltd. All rights reserved.)

The manufacturing systems of the future will be even more dependent on data than they are today. More and more data and information are being collected and communicated throughout product development lifecycles and across manufacturing value chains. To enable smarter manufacturing operations, new equipment often includes built-in data collection capabilities. Older equipment can be retrofitted inexpensively with sensors to collect a wide variety of data. Many manufacturers are in a quandary as to what to do with increasing quantities of data. Much hype currently surrounds the use of AI to process large data sets, but manufacturers struggle to understand how AI can be applied to improve manufacturing system performance. The gap lies in the lack of good information governance practices for manufacturing. This paper defines information governance in the manufacturing context as the set of principles that allow for consistent, repeatable, and trustworthy processing and use of data. The paper identifies three foundations for good information governance that are needed in the manufacturing environment-data quality, semantic context, and system context-and reviews the surrounding and evolving body of work. The work includes a broad base of standard methods that combines to create reusable information from raw data formats. An example from an additive manufacturing case study is used to show how those detailed specifications create the governance needed to build trust in the systems.

Introduction:  Use of web-based messaging applications to communicate clinical information is common between non-consultant hospital doctors (NCHDs). This study sought to assess web-based messenger use in NCHDs following the introduction of a more secure alternative to WhatsApp (WhatsApp, Inc., Menlo Park, CA, USA)., Methods:  A 10-item survey was undertaken on two NCHD cohorts. The second cohort received training on data protection and an alternative application to WhatsApp. Quantitative data analysis was conducted using the IBM Statistical Package for Social Sciences (SPSS) (IBM SPSS Statistics, Armonk, NY)., Results:  The total response rate across both groups was 63% (N = 68). The majority of respondents used WhatsApp to communicate clinical information. In the second cohort, fewer NCHDs shared identifiable sensitive patient information 97% (n = 29/30) vs 81% (n = 25/31) and fewer NCHDs shared/stored clinical images., Discussion:  WhatsApp use is common among NCHDs. An alternative means of communication can improve the safety of patient data. NCHDs require more training on data protection laws and their own responsibilities., Competing Interests: The authors have declared that no competing interests exist.

Digital data generated in the course of clinical care are increasingly being leveraged for a wide range of secondary purposes. Researchers need to develop governance policies that can assure the public that their information is being used responsibly. Our aim was to develop a generalisable model for governance of research emanating from health data repositories that will invoke the trust of the patients and the healthcare professionals whose data are being accessed for health research. We developed our governance principles and processes through literature review and iterative consultation with key actors in the research network including: a data governance working group, the lead investigators and patient advisors. We then recruited persons to participate in the governing and advisory bodies. Our governance process is informed by eight principles: (1) transparency; (2) accountability; (3) follow rule of law; (4) integrity; (5) participation and inclusiveness; (6) impartiality and independence; (7) effectiveness, efficiency and responsiveness and (8) reflexivity and continuous quality improvement. We describe the rationale for these principles, as well as their connections to the subsequent policies and procedures we developed. We then describe the function of the Research Governing Committee, the majority of whom are either persons living with diabetes or physicians whose data are being used, and the patient and data provider advisory groups with whom they consult and communicate. In conclusion, we have developed a values-based information governance framework and process for Diabetes Action Canada that adds value over-and-above existing scientific and ethics review processes by adding a strong patient perspective and contextual integrity. This model is adaptable to other secure data repositories., Competing Interests: Competing interests: The Institute of Health Policy, Management and Evaluation received funds from Diabetes Action Canada SPOR Network towards a partial secondment of DJW time for the development of the governance process for the diabetes data repository. The Department of Family and Community Medicine, University of Toronto, received funds from Diabetes Action Canada SPOR Network towards a partial secondment of MG time for the development of the Diabetes data repository. KK received personal fees from InfoClin during the conduct of the study towards designing the architecture of the Diabetes data repository. In addition, KK has a patent ‘Prediction of Diabetes Mellitus Type 2 Using Biomarkers in Electronic Health Records and Differential Calculus’, pending., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objectives: Efficient and accurate communication between healthcare professionals (HCPs) serves as the backbone to safe and efficient care delivery. Traditional pager-based interpersonal communication may contribute to inefficient communication practices and lapses in medical care., Methods: This study aimed to examine the impact of Medic Bleep, a National Health Service (NHS) information governance-compliant instant messaging application, in an NHS Hospital Trust. We examined Medic Bleep's impact on participant time and workflow using time-motion methodology. Cohorts of doctors and nurses using both Medic Bleep and the traditional pager were compared. Secondary endpoints of our study were to assess whether efficient communications could lead to better resource utilisation, patient safety as well as better quality of work life for the end user., Results: Assimilation of Medic Bleep corresponded to a reduction in mean task-duration that was statistically significant ( p  < 0.05) for To Take Out (TTO) and Patient Review categories. Nurses saved an average of 21 minutes per shift ( p  < 0.05), whereas doctors saved an average of 48 minutes ( p  < 0.05) per shift. Qualitative analysis suggested that HCPs benefited from better work prioritisation, collaboration and reduced medical errors enabled by an auditable communication workflow., Conclusion: Medic Bleep reduced time spent on the tasks requiring interpersonal communication. Efficiencies were seen in Discharge Patient Flow, Patient Review and TTO categories. This improved HCP availability and response times to the benefit of patients. End users revealed that Medic Bleep had a positive effect on quality of work life.

In contrast to secondary care, where handwritten records remain widespread, electronic patient records have long been a key feature of UK general practice. By 1996, 96% of general practices were computerised and now almost every primary care consultation in the UK is recorded on a computerised clinical system. Consequently, we now have a vast repository of patient health data that spans decades, which could be used to address a range of important research questions. Unfortunately, accessing primary care data for health researchers can be a burdensome, confusing and time-consuming process. Understanding the way in which primary care data are recorded and 'coded' is not intuitive to those unfamiliar with general practice. The requirements of information governance mean that some data, or data presented in particular ways, are not available at all. This review provides a practical overview of the types of data recorded in primary care, the bodies responsible for them and how they can be accessed.

The EU offers a suitable milieu for the comparison and harmonisation of healthcare across different languages, cultures, and jurisdictions (albeit with a supranational legal framework), which could provide improvements in healthcare standards across the bloc. There are specific ethico-legal issues with the use of data in healthcare research that mandate a different approach from other forms of research. The use of healthcare data over a long period of time is similar to the use of tissue in biobanks. There is a low risk to subjects but it is impossible to gain specific informed consent given the future possibilities for research. Large amounts of data on a subject present a finite risk of re-identification. Consequently, there is a balancing act between this risk and retaining sufficient utility of the data. Anonymising methods need to take into account the circumstances of data sharing to enable an appropriate balance in all cases. There are ethical and policy advantages to exceeding the legal requirements and thereby securing the social licence for research. This process would require the examination and comparison of data protection laws across the trading bloc to produce an ethico-legal framework compatible with the requirements of all member states. Seven EU jurisdictions are given consideration in this critique.

Mobile devices allow clinicians to access electronic clinical systems away from traditional base locations. They have contributed to increased productivity and efficiency, and clinical staff also cite benefits to patient care. A selection of NHS trusts have participated in a national pilot to explore the benefits and drawbacks of this technology. Clinical engagement with frontline staff is essential to ensure the staff feel valued, listened to, and fully involved to ensure any change to existing practice is successful. Moreover, the training needs of the workforce require careful consideration. The provision of information technology (IT) support services is fundamental to ensure that staff receive the necessary assistance with any functionality issues they may experience with mobile devices to minimise the effect on clinical practice. Variability in internet connectivity may present as a challenge to clinical staff, and the benefits of complimentary offline working solutions should be considered. Barriers to the successful use of mobile devices should be reported as this may have a negative clinical effect on the safe delivery of patient care. Clinical staff need to be mindful of their obligations in relation to information governance, and should appreciate that the same consideration needs to be given to both paper and electronic records.

Purpose: To provide an overview of essential elements of good governance of data linkage for health-related research, to consider lessons learned so far and to examine key factors currently impeding the delivery of good governance in this area. Given the considerable hurdles which must be overcome and the changing landscape of health research and data linkage, a principled, proportionate, risk-based approach to governance is advocated., Discussion: In light of the considerable value of data linkage to health and well-being, the United Kingdom aspires to design and deliver good governance in health-related research. A string of projects have been asking: what does good governance look like in data linkage for health research? It is argued here that considerable progress can and must be made in order to develop the UK's contribution to future health and wealth economies, particularly in light of mis-start initiatives such as care.data in NHS England. Discussion centres around lessons learned from previous successful health research initiatives, identifying those governance mechanisms which are essential to achieving good governance., Conclusion: This article suggests that a crucial element in any step-increase of research capability will be the adoption of adaptive governance models. These must recognise a range of approaches to delivering safe and effective data linkage, while remaining responsive to public and research user expectations and needs as these shift and change with time and experience. The targets are multiple and constantly moving. There is not--nor should we seek--a single magic bullet in delivering good governance in health research., (Copyright © 2015. Published by Elsevier Ireland Ltd.)

Background: Young people living with long term conditions are vulnerable to health service disengagement. This endangers their long term health. Studies report requests for digital forms of communication - email, text, social media - with their health care team. Digital clinical communication is troublesome for the UK NHS., Aim: In this article we aim to present the research protocol for evaluating the impacts and outcomes of digital clinical communications for young people living with long term conditions and provide critical analysis of their use, monitoring and evaluation by NHS providers (LYNC study: Long term conditions, Young people, Networked Communications)., Methods: The research involves: (a) patient and public involvement activities with 16-24 year olds with and without long term health conditions; (b) six literature reviews; (c) case studies - the main empirical part of the study - and (d) synthesis and a consensus meeting. Case studies use a mixed methods design. Interviews and non-participant observation of practitioners and patients communicating in up to 20 specialist clinical settings will be combined with data, aggregated at the case level (non-identifiable patient data) on a range of clinical outcomes meaningful within the case and across cases. We will describe the use of digital clinical communication from the perspective of patients, clinical staff, support staff and managers, interviewing up to 15 young people and 15 staff per case study. Outcome data includes emergency admissions, A&E attendance and DNA (did not attend) rates. Case studies will be analysed to understand impacts of digital clinical communication on patient health outcomes, health care costs and consumption, ethics and patient safety., Competing Interests: None declared.

Background: The development of Electronic Health Records (EHRs) forms an integral part of the information strategy for the National Health Service (NHS) in the UK, with the aim of facilitating health information exchange for patient care and secondary use, including research and healthcare planning. Implementing EHR systems requires an understanding of patient expectations for consent mechanisms and consideration of public awareness towards information sharing as might be made possible through integrated EHRs across primary and secondary health providers., Objectives: To explore levels of public awareness about EHRs and to examine attitudes towards different consent models with respect to sharing identifiable and de-identified records for healthcare provision, research and planning., Methods: A cross-sectional questionnaire survey was administered to adult patients and members of the public in primary and secondary care clinics in West London, UK in 2011. In total, 5331 individuals participated in the survey, and 3157 were included in the final analysis., Results: The majority (91%) of respondents expected to be explicitly asked for consent for their identifiable records to be accessed for health provision, research or planning. Half the respondents (49%) did not expect to be asked for consent before their de-identified records were accessed. Compared with White British respondents, those from all other ethnic groups were more likely to anticipate their permission would be obtained before their de-identified records were used. Of the study population, 59% reported already being aware of EHRs before the survey. Older respondents and individuals with complex patterns of interaction with healthcare services were more likely to report prior awareness of EHRs. Individuals self-identifying as belonging to ethnic groups other than White British, and those with lower educational qualifications were less likely to report being aware of EHRs than White British respondents and respondents with degree-level education, respectively. Those who reported being aware of EHRs were less likely to say they expected explicit consent to be sought before use of their de-identified record., Conclusions: A large number of patients remain unaware of EHRs, while preference for implicit consent is stronger among those who report previous awareness. Differences in awareness levels and consent expectations between groups with different socio-demographic characteristics suggest that public education and information campaigns should target specific groups to increase public awareness and ensure meaningful informed consent mechanisms., (Copyright © 2015 The Authors. Published by Elsevier Ireland Ltd.. All rights reserved.)

Nurses face a particular challenge in respecting the confidentiality of patients in a world where information is quickly shared and where information about illness can be sensitive. We have a duty of care towards patients. That duty includes maintaining privacy (protecting them from undue intrusion), and confidentiality (by the discreet management of information about themselves that they share with us). Legislation on confidentiality comes from different sources and should be interpreted in the clinical setting. This article summarises the principal requirements set out in the legislation and directs readers to questions and tools designed to help them explore the extent to which patient confidentiality is respected where they work.

Health care has lagged behind other industries in its use of advanced analytics. The Veterans Health Administration (VHA) has three decades of experience collecting data about the veterans it serves nationwide through locally developed information systems that use a common electronic health record. In 2006 the VHA began to build its Corporate Data Warehouse, a repository for patient-level data aggregated from across the VHA's national health system. This article provides a high-level overview of the VHA's evolution toward "big data," defined as the rapid evolution of applying advanced tools and approaches to large, complex, and rapidly changing data sets. It illustrates how advanced analysis is already supporting the VHA's activities, which range from routine clinical care of individual patients--for example, monitoring medication administration and predicting risk of adverse outcomes--to evaluating a systemwide initiative to bring the principles of the patient-centered medical home to all veterans. The article also shares some of the challenges, concerns, insights, and responses that have emerged along the way, such as the need to smoothly integrate new functions into clinical workflow. While the VHA is unique in many ways, its experience may offer important insights for other health care systems nationwide as they venture into the realm of big data., (Project HOPE—The People-to-People Health Foundation, Inc.)

Objective: We specifically identified the hospital desktop computer as a potential source of breaches in confidentiality. We aimed to evaluate if there was accessible, unprotected, confidential information stored on the desktop screen on computers in a district general hospital and if so, how a teaching intervention could improve this situation., Design: An unannounced spot check of 59 ward computers was performed. Data were collected regarding how many had confidential information stored on the desktop screen without any password protection. An online learning module was mandated for healthcare staff and a second cycle of inspection performed., Setting: A district general hospital., Participants: Two doctors conducted the audit. Computers in clinical areas were assessed. All clinical staff with computer access underwent the online learning module., Intervention: An online learning module regarding data protection and confidentiality., Results: In the first cycle, 55% of ward computers had easily accessible patient or staff confidential information stored on their desktop screen. This included handovers, referral letters, staff sick leave lists, audits and nursing reports. The majority (85%) of computers accessed were logged in under a generic username and password. The intervention produced an improvement in the second cycle findings with only 26% of computers being found to have unprotected confidential information stored on them., Conclusions: The failure to comply with appropriate confidential data protection regulations is a persistent problem. Education produces some improvement but we also propose a systemic approach to solving this problem., (Copyright © 2014 Elsevier Ireland Ltd. All rights reserved.)