Security and confidentiality approach for the Clinical E-Science Framework (CLEF)

Objectives: CLEF is an MRC sponsored project in the E-Science programme that aims to establish methodologies and a technical infrastructure for the next generation of integrated clinical and bioscience research. Methods: The heart of the CLEF approach to this challenge is to design and develop a pseudonymised repository of histories of cancer patients that can be accessed by researchers. Robust mechanisms and policies have been developed to ensure that patient privacy and confidentiality are preserved while delivering a repository of such medically rich information for the purposes of scientific research. Results: This paper summarises the overall approach adopted by CLEF to meet data protection requirements, including the data flows, pseudonymisation measures and additional monitoring policies that are currently being developed. Conclusion: Once evaluated, it is hoped that the CLEF approach can serve as a model for other distributed electronic health record repositories to be accessed for research

Security and confidentiality approach for the Clinical E-Science Framework (CLEF)

CLEF is an MRC sponsored project in the E-Science programme that aims to establish policies and infrastructure for the next generation of integrated clinical and bioscience research. One of the major goals of the project is to provide a pseudonymised repository of histories of cancer patients that can be accessed by researchers. Robust mechanisms and policies are needed to ensure that patient privacy and confidentiality are preserved while delivering a repository of such medically rich information for the purposes of scientific research. This paper summarises the overall approach adopted by CLEF to meet data protection requirements, including the data flows and pseudonymisation mechanisms that are currently being developed. Intended constraints and monitoring policies that will apply to research interrogation of the repository are also outlined. Once evaluated, it is hoped that the CLEF approach can serve as a model for other distributed electronic health record repositories to be accessed for research

Development of an integrated electronic platform for patient self-report and management of adverse events during cancer treatment.

Background: Significant adverse events (AE) during cancer therapy disrupt treatment and escalate to emergency admissions. Approaches to improve the timeliness and accuracy of AE reporting may improve safety and reduce health service costs. Reporting AE via patient reported outcomes (PROs), can improve clinician-patient communication and making data available to clinicians in 'real-time' using electronic PROs (ePROs) could potentially transform clinical practice by providing easily accessible records to guide treatment decisions. This manuscript describes the development of eRAPID (electronic patient self-Reporting of Adverse-events: Patient Information and aDvice) is a National Institute for Health Research-funded programme, a system for patients to self-report and manage AE online during and after cancer treatment. Materials and methods: A multidisciplinary team of IT experts, staff and patients developed using agile principles a secure web application interface (QStore) between an existing online questionnaire builder (QTool) displaying real-time ePRO data to clinicians in the electronic patient record at Leeds Teaching Hospitals NHS Trust. Hierarchical algorithms were developed corresponding to Common Terminology Criteria for Adverse Events grading using the QTool question dependency function. Patient advocates (N = 9), patients (N = 13), and staff (N = 19) usability tested the system reporting combinations of AE. Results: The eRAPID system allows patients to report AE from home on PC, tablet or any web enabled device securely during treatment. The system generates immediate self-management advice for low or moderate AE and for severe AE advice to contact the hospital immediately. Clinicians can view patient AE data in the electronic patient record and receive email notifications when patients report severe AE. Conclusions: Evaluation of the system in a randomised controlled trial in breast, gynaecological and colorectal cancer patients undergoing systemic therapy is currently underway. To adapt eRAPID for different treatment groups, pilot studies are being undertaken with patients receiving pelvic radiotherapy and upper gastrointestinal surgery. ISRCTN88520246

Implementing a knowledge management system within an NHS hospital:a case study exploring the roll-out of an Electronic Patient Record (EPR)

This research aims to contribute to understanding the implementation of knowledge management systems (KMS) in the field of health through a case study, leading to theory building and theory extension. We use the concept of the business process approach to knowledge management as a theoretical lens to analyse and explore how a large teaching hospital developed, executed and practically implemented a KMS. A qualitative study was conducted over a 2.5 year period with data collected from semi-structured interviews with eight members of the strategic management team, 12 clinical users and 20 patients in addition to non-participant observation of meetings and documents. The theoretical propositions strategy was used as the overarching approach for data analysis. Our case study provides evidence that true patient centred approaches to supporting care delivery with a KMS benefit from process thinking at both the planning and implementation stages, and an emphasis on the knowledge demands resulting from: the activities along the care pathways; where cross-overs in care occur; and knowledge sharing for the integration of care. The findings also suggest that despite the theoretical awareness of KMS implementation methodologies, the actual execution of such systems requires practice and learning. Flexible, fluid approaches through rehearsal are important and communications strategies should focus heavily on transparency incorporating both structured and unstructured communication methods

How genomic information is accessed in clinical practice: an electronic survey of UK general practitioners.

Genomic technologies are having an increasing impact across medicine, including primary care. To enable their wider adoption and realize their potential, education of primary health-care practitioners will be required. To enable the development of such resources, understanding where GPs currently access genomic information is needed. One-hundred fifty-nine UK GPs completed the survey in response to an open invitation, between September 2017 and September 2018. Questions were in response to 4 clinical genomic scenarios, with further questions exploring resources used for rare disease patients, direct-to-consumer genetic testing and collecting a family history. Respondents were most commonly GP principals (independent GPs who own their clinic) (64.8%), aged 35-49 years (54%), worked as a GP for more than 15 years (44%) and practiced within suburban locations (typically wealthier) (50.3%). The most popular 'just in time' education source for all clinical genomic scenarios were online primary care focussed resources with general Internet search engines also popular. For genomic continuous medical education, over 70% of respondents preferred online learning. Considering specific scenarios, local guidelines were a popular resource for the familial breast cancer scenario. A large proportion (41%) had not heard of Genomics England's 100,000 genome project. Few respondents (4%) would access rare disease specific Internet resources (Orphanet, OMIM). Twenty-five percent of respondents were unsure how to respond to a direct-to-consumer commercial genetic test query, with 41% forwarding such queries to local genetic services. GPs require concise, relevant, primary care focussed resources in trusted and familiar online repositories of information. Inadequate genetic education of GPs could increase burden on local genetic services

Sharing and viewing segments of electronic patient records service (SVSEPRS) using multidimensional database model

This thesis was submitted for the degree of Doctor of Philosophy and awarded by Brunel University.The concentration on healthcare information technology has never been determined than it is today. This awareness arises from the efforts to accomplish the extreme utilization of Electronic Health Record (EHR). Due to the greater mobility of the population, EHR will be constructed and continuously updated from the contribution of one or many EPRs that are created and stored at different healthcare locations such as acute Hospitals, community services, Mental Health and Social Services. The challenge is to provide healthcare professionals, remotely among heterogeneous interoperable systems, with a complete view of the selective relevant and vital EPRs fragments of each patient during their care. Obtaining extensive EPRs at the point of delivery, together with ability to search for and view vital, valuable, accurate and relevant EPRs fragments can be still challenging. It is needed to reduce redundancy, enhance the quality of medical decision making, decrease the time needed to navigate through very high number of EPRs, which consequently promote the workflow and ease the extra work needed by clinicians. These demands was evaluated through introducing a system model named SVSEPRS (Searching and Viewing Segments of Electronic Patient Records Service) to enable healthcare providers supply high quality and more efficient services, redundant clinical diagnostic tests. Also inappropriate medical decision making process should be avoided via allowing all patients‟ previous clinical tests and healthcare information to be shared between various healthcare organizations. Multidimensional data model, which lie at the core of On-Line Analytical Processing (OLAP) systems can handle the duplication of healthcare services. This is done by allowing quick search and access to vital and relevant fragments from scattered EPRs to view more comprehensive picture and promote advances in the diagnosis and treatment of illnesses. SVSEPRS is a web based system model that helps participant to search for and view virtual EPR segments, using an endowed and well structured Centralised Multidimensional Search Mapping (CMDSM). This defines different quantitative values (measures), and descriptive categories (dimensions) allows clinicians to slice and dice or drill down to more detailed levels or roll up to higher levels to meet clinicians required fragment

Applying Quality Improvement methods to address gaps in medicines reconciliation at transfers of care from an acute UK hospital

© Published by the BMJ Publishing Group Limited.Objectives Reliable reconciliation of medicines at admission and discharge from hospital is key to reducing unintentional prescribing discrepancies at transitions of healthcare. We introduced a team approach to the reconciliation process at an acute hospital with the aim of improving the provision of information and documentation of reliable medication lists to enable clear, timely communications on discharge. Setting An acute 400-bedded teaching hospital in London, UK. Participants The effects of change were measured in a simple random sample of 10 adult patients a week on the acute admissions unit over 18â €...months. Interventions Quality improvement methods were used throughout. Interventions included education and training of staff involved at ward level and in the pharmacy department, introduction of medication documentation templates for electronic prescribing and for communicating information on medicines in discharge summaries co-designed with patient representatives. Results Statistical process control analysis showed reliable documentation (complete, verified and intentional changes clarified) of current medication on 49.2% of patients discharge summaries. This appears to have improved (to 85.2%) according to a poststudy audit the year after the project end. Pharmacist involvement in discharge reconciliation increased significantly, and improvements in the numbers of medicines prescribed in error, or omitted from the discharge prescription, are demonstrated. Variation in weekly measures is seen throughout but particularly at periods of changeover of new doctors and introduction of new systems. Conclusions New processes led to a sustained increase in reconciled medications and, thereby, an improvement in the number of patients discharged from hospital with unintentional discrepancies (errors or omissions) on their discharge prescription. The initiatives were pharmacist-led but involved close working and shared understanding about roles and responsibilities between doctors, nurses, therapists, patients and their carers

A KM perspective on implementing an electronic patient record within an NHS hospital

The Electronic Patient Record (EPR) is being developed by many hospitals in the UK and across the globe. We class an EPR system as a type of Knowledge Management System (KMS), in that it is a technological tool developed to support the process of knowledge management (KM). Healthcare organisations aim to use these systems to provide a vehicle for more informed and improved clinical decision making thereby delivering reduced errors and risks, enhanced quality and consequently offering enhanced patient safety. Finding an effective way for a healthcare organisation to practically implement these systems is essential. In this study we use the concept of the business process approach to KM as a theoretical lens to analyse and explore how a large NHS teaching hospital developed, executed and practically implemented an EPR system. This theory advocates the importance of taking into account all organizational activities - the business processes - in considering any KM initiatives. Approaching KM through business processes allows for a more holistic view of the requirements across a process: emphasis is placed on how particular activities are performed, how they are structured and what knowledge demanded and not just supplied across each process. This falls in line with the increased emphasis in healthcare on patient-centred approaches to care delivery. We have found in previous research that hospitals are happy with the delivery of patient care being referred to as their 'business'. A qualitative study was conducted over a two and half year period with data collected from semi-structured interviews with eight members of the strategic management team, 12 clinical users and 20 patients in addition to non- participant observation of meetings and documentary data. We believe that the inclusion of patients within the study may well be the first time this has been done in examining the implementation of a KMS. The theoretical propositions strategy was used as the overarching approach for data analysis. Here Initial theoretical research themes and propositions were used to help shape and organise the case study analysis. This paper will present preliminary findings about the hospital's business strategy and its links to the KMS strategy and process

Diffusion of innovations in the National Health Service: A Case Study investigating the implementation of an electronic patient record system in a UK secondary care Trust.

The aim of the research was to explore the experiences of consultants during the implementation stages of a major IT programme in a UK health care organisation and to explain what factors affected the adoption of the new technologies. A single site case study approach using semi-structured interviews and project documentation was employed. The data was analysed using a method similar to Template Analysis. It was found that the Trust employed a top down, centrally driven model which was perceived as a technology push, even though it was claimed to be clinical lead. Innovation attributes that were the most influential were the poor performance and its impact on the perceptions of relative advantage, voluntariness and cost. Organisational problems encountered included differences between the structures of the IT directorate and the centralised structure of the organisation. Managing the perceptions of consultants towards IT is an essential element to facilitate the successful adoption of information technology