Tensions and paradoxes in electronic patient record research: a systematic literature review using the meta-narrative method

Background: The extensive and rapidly expanding research literature on electronic patient records (EPRs) presents challenges to systematic reviewers. This literature is heterogeneous and at times conflicting, not least because it covers multiple research traditions with different underlying philosophical assumptions and methodological approaches. Aim: To map, interpret and critique the range of concepts, theories, methods and empirical findings on EPRs, with a particular emphasis on the implementation and use of EPR systems. Method: Using the meta-narrative method of systematic review, and applying search strategies that took us beyond the Medline-indexed literature, we identified over 500 full-text sources. We used ‘conflicting’ findings to address higher-order questions about how the EPR and its implementation were differently conceptualised and studied by different communities of researchers. Main findings: Our final synthesis included 24 previous systematic reviews and 94 additional primary studies, most of the latter from outside the biomedical literature. A number of tensions were evident, particularly in relation to: [1] the EPR (‘container’ or ‘itinerary’); [2] the EPR user (‘information-processer’ or ‘member of socio-technical network’); [3] organizational context (‘the setting within which the EPR is implemented’ or ‘the EPR-in-use’); [4] clinical work (‘decision-making’ or ‘situated practice’); [5] the process of change (‘the logic of determinism’ or ‘the logic of opposition’); [6] implementation success (‘objectively defined’ or ‘socially negotiated’); and [7] complexity and scale (‘the bigger the better’ or ‘small is beautiful’). Findings suggest that integration of EPRs will always require human work to re-contextualize knowledge for different uses; that whilst secondary work (audit, research, billing) may be made more efficient by the EPR, primary clinical work may be made less efficient; that paper, far from being technologically obsolete, currently offers greater ecological flexibility than most forms of electronic record; and that smaller systems may sometimes be more efficient and effective than larger ones. Conclusions: The tensions and paradoxes revealed in this study extend and challenge previous reviews and suggest that the evidence base for some EPR programs is more limited than is often assumed. We offer this paper as a preliminary contribution to a much-needed debate on this evidence and its implications, and suggest avenues for new research

Growing an information infrastructure for healthcare based on the development of large-scale Electronic Patient Records

The papers of this thesis are not available in Munin. Paper 1. Silsand, L., Ellingsen, G. (2014). Generification by Translation: Designing Generic Systems in Context of the Local. Available in: Journal of Association for Information Systems, vol. 15(4): 3. Paper 2. Christensen, B., Silsand, L., Wynn, R. and Ellingsen, G. (2014). The biography of participation. In Proceedings of the 13th Participatory Design Conference, 6-10 Oct. Windhoek, Namibia. ACM Digital Library. Paper 3. Silsand, L. and Ellingsen, G. (2016). Complex Decision-Making in Clinical Practice. In: Proceedings of the 19th ACM Conference on Computer-Supported Cooperative Work & Social Computing (CSCW '16). ACM Digital Library. ISBN: 978-1-4503-3592-8. Paper 4: Silsand, L., Ellingsen, G. (2017). Governance of openEHR-based information Infrastructures. (Manuscript). Paper 5. Silsand, L. (2017). The ‘Holy Grail’ of Interoperability of Health Information Systems: Challenges and Implications. Available in: Stigberg S., Karlsen J., Holone H., Linnes C. (eds) Nordic Contributions in IS Research. SCIS 2017. Lecture Notes in Business Information Processing, vol 294. Springer, Cham. This thesis provides empirical insights about socio-technical interdependencies affecting the making and scaling of an Information Infrastructure (II) for healthcare based on the development of large-scale Electronic Patient Records. The Ph.D. study is an interpretive case study, where the empirical data has been collected from 2012 to 2017. In most developed countries, the pressures from politicians and public in general for better IT solutions have grown enormously, not least within Electronic Patient Record (EPR) systems. Considerable attention has been given to the proposition that the exchange of health information is a critical component to reach the triple aim of (1) better patient experiences through quality and satisfaction; (2) better health outcomes of populations; and (3) reduction of per capita cost of health care. A promising strategy for dealing with the challenges of accessibility, efficiency, and effective sharing of clinical information to support the triple aim is an open health-computing platform approach, exemplified by the openEHR approach in the empirical case. An open platform approach for computing EPR systems addresses some vital differences from the traditional proprietary systems. Accordingly, the study has payed attention to the vital difference, and analyze the technology and open platform approach to understand the challenges and implications faced by the empirical process. There are two main messages coming out of this Ph.D. study. First, when choosing an open platform approach to establish a regional or national information infrastructure for healthcare, it is important to define it as a process, not a project. Because limiting the realization of a large-scale open platform based infrastructure to the strict timeline of a project may hamper infrastructure growth. Second, realizing an open platform based information infrastructure requires large structural and organizational changes, addressing the need for integrating policy design with infrastructure design

‘The Going Digital Study’ – The implementation of electronic patient records in a paediatric tertiary hospital: Understanding the benefits and challenges for patients, parents and staff and the practical, ethical and legal implications

BACKGROUND: The Going Digital Study uniquely captured the experiences of all user groups before and after digital transformation of Great Ormond Street Hospital for Children (GOSH) whilst implementing an electronic patient record (EPR) system with a tethered patient portal in April 2019. This was critical and core to GOSH becoming a digital hospital, with benefits anticipated, yet challenges for all. AIM: To investigate the practical, ethical and legal considerations of implementing an EPR in a children’s tertiary hospital involving three stakeholder groups: children and young people (CYP), parents and staff. METHODS: A three phase, concurrent mixed methods, pre/post study design was utilised including both quantitative (survey) and qualitative (World Café workshops/interviews/focus group) data collection, analysis and synthesis. A systematic review of the literature was also conducted and was key to informing the examination of the experiences of users of an electronic patient record system in a children’s hospital setting and interpretation of the findings. RESULTS: Despite the challenges experienced by all stakeholders, including ethical and legal issues associated with CYP and parents accessing health data for the first time through the patient portal, meaningful portal access can be achieved from the age of 12 years of age. Families need support accessing health information via the portal. Clinicians need to have early conversations with parents about truth-telling and sharing diagnoses and/or prognoses, supporting families through the process of disclosure. Staff need prolonged support to balance clinical demands during implementation of and adjustment to the new clinical system, whilst continuing care provision and managing families’ expectations. CONCLUSION: Implementation and transition to an EPR system with a tethered patient portal is complex and takes time to embed. Setting realistic expectations and involving all stakeholders at all stages is paramount if benefits for all are to be fully realised. Managing this change process well, with prolonged engagement over time with all stakeholders, is essential if future utility is to be achieved. This requires an inclusive culture, in which the voice of all children and young people and parents is valued, and enabled through investment of appropriate resources, with equity of access a key priority

‘We can only request what’s in our protocol’: technology and work autonomy in healthcare

This paper explores the tension between standardization and autonomy raised by the implementation of new technology in healthcare organisations. The theoretical frame of this study is grounded in the impact of new technologies on work organisation, routinization and autonomy across settings. Empirically it presents evidence from two NHS Trusts in England that implemented a national Electronic Patient Record (EPR). The paper aims to reinvigorate the debate on the tension between standardization and autonomy in professional workplaces such as healthcare. It argues that the implication of technology in professional work conditions processes of task routinization that constrain autonomy, and enables reallocation of discretion between professional groups. We argue that routinization is not restricted to low-skill work but may travel across contexts and be evidenced in high-skill work environments. The interplay between routinization and autonomy is also useful in drawing insights concerning the dynamics of change that occur in professional work

An organisational semiotics inspired information architecture: pervasive healthcare as a case study

Information architecture (IA) is defined as high level information requirements of an organisation. It is applied in areas such as information systems development, enterprise architecture, business processes management and organisational change management. Still, the lack of methods and theories prevents information architecture becoming a distinct discipline. Healthcare organisation is always seen as information intensive organisation, moreover in a pervasive healthcare environment. Pervasive healthcare aims to provide healthcare services to anyone, anywhere and anytime by incorporating mobile devices and wireless network. Information architecture hence plays an important role in information provisioning within the context of pervasive healthcare in order to support decision making and communication between clinician and patients. Organisational semiotics is one of the social technical approaches that contemplate information through the norms or activities performed within an organisation prior to pervasive healthcare implementation. This paper proposes a conceptual design of information architecture for pervasive healthcare. It is illustrated with a scenario of mental health patient monitoring

Evidence-Based Information Systems: A New Perspective and a Road Map for Research-Informed Practice

Despite the increasing sophistication and quality of published work, the development of a cumulative body of knowledge and an evidence-base for information systems (IS) research still represents a major challenge. IS research is still predominantly undertaken by IS researchers for other IS researchers and not utilized to its full extent by IS practitioners or policy-makers. We focus on this problem and express the need for a new evidence-based research perspective. It is argued that it is time to refocus the efforts of IS academics (and practitioners) to develop a new evidence-base for IS research whereby it can more routinely inform, develop, improve and support IS practice. We contribute to this debate by defining evidence-based practice (EBP), its relevance to IS, and the need to develop an evidence-based approach. We look in particular at its brief history, and its subsequent evolution, development and widespread acceptance in Medicine; making reference to recent arguments and critiques of EBP in other disciplines such as software engineering and management. We espouse the need to develop a similar evidence-based movement and infrastructure within the IS research and practitioner communities and then put forward a possible road map for the development of Evidence-Based Information Systems (EBIS) that comprises 9 key initiatives. We conclude our argument by stating that the current extent, severity and impact of IS failures are unacceptable, emphasizing the need for a new perspective for IS research that encourages and incorporates EBP as a guiding principle to inform better IS practice

Pick-n-mix approaches to technology supply : XML as a standard “glue” linking universalised locals

We report on our experiences in a participatory design project to develop ICTs in a hospital ward working with deliberate self-harm patients. This project involves the creation and constant re-creation of sociotechnical ensembles in which XML-related technologies may come to play vital roles. The importance of these technologies arises from the aim underlying the project of creating systems that are shaped in locally meaningful ways but reach beyond their immediate context to gain wider importance. We argue that XML is well placed to play the role of "glue" that binds multiple such systems together. We analyse the implications of localised systems development for technology supply and argue that inscriptions that are evident in XML-related standards are and will be very important for the uptake of XML technologies

Summary care record early adopter programme: an independent evaluation by University College London.

Benefits The main potential benefit of the SCR is considered to be in emergency and unscheduled care settings, especially for people who are unconscious, confused, unsure of their medical details, or unable to communicate effectively in English. Other benefits may include improved efficiency of care and avoidance of hospital admission, but it is too early for potential benefits to be verified or quantified. Progress As of end April 2008, the SCR of 153,188 patients in the first two Early Adopter sites (Bolton and Bury) had been created. A total of 614,052 patients in four Early Adopter sites had been sent a letter informing them of the programme and their choices for opting out of having a SCR. Staff attitudes and usage The evaluation found that many NHS staff in Early Adopter sites (which had been selected partly for their keenness to innovate in ICT) were enthusiastic about the SCR and keen to see it up and running, but a significant minority of GPs had chosen not to participate in the programme and others had deferred participation until data quality improvement work was completed. Whilst 80 per cent of patients interviewed were either positive about the idea of having a SCR or ?did not mind?, others were strongly opposed ?on principle?. Staff who had attempted to use the SCR when caring for patients felt that the current version was technically immature (describing it as ?clunky? and ?complicated?), and were looking forward to a more definitive version of the technology. A comparable technology (the Emergency Care Summary) introduced in Scotland two years ago is now working well, and over a million records have been accessed in emergency and out-of-hours care. Patient attitudes and awareness Having a SCR is optional (people may opt out if they wish, though fewer than one per cent of people in Early Adopter sites have done so) and technical security is said to be high via a system of password protection and strict access controls. Nevertheless, the evaluation showed that recent stories about data loss by government and NHS organisations had raised concerns amongst both staff and patients that human fallibility could potentially jeopardise the operational security of the system. Despite an extensive information programme to inform the public in Early Adopter sites about the SCR, many patients interviewed by the UCL team were not aware of the programme at all. This raises important questions about the ethics of an ?implied consent? model for creating the SCR. The evaluation recommended that the developers of the SCR should consider a model in which the patient is asked for ?consent to view? whenever a member of staff wishes to access their record. Not a single patient interviewed in the evaluation was confident that the SCR would be 100 per cent secure, but they were philosophical about the risks of security breaches. Typically, people said that the potential benefit of a doctor having access to key medical details in an emergency outweighed the small but real risk of data loss due to human or technical error. Even patients whose medical record contained potentially sensitive data such as mental health problems, HIV or drug use were often (though not always) keen to have a SCR and generally trusted NHS staff to treat sensitive data appropriately. However, they and many other NHS patients wanted to be able to control which staff members were allowed to access their record at the point of care. Some doctors, nurses and receptionists, it seems, are trusted to view a person?s SCR, whereas others are not, and this is a decision which patients would like to make in real time